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Transcript
Avril V. Brereton
2008
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
ii
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
Avril V. Brereton
2008
iii
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
Acknowledgements
This book was commissioned by the Victorian Government, Department of Education and Early
Childhood Development in the Hume Region.
Wendy Fletcher, Senior Programs Officer, Student Well-Being, has initiated the development of
resources to increase awareness of the transition needs of students with Autism Spectrum Disorders and
their families. This book and its accompanying training workshop are part of that initiative.
My thanks to colleagues: Kerry Bull for her careful editing of the manuscript and advice on special
education matters; Prof Bruce Tonge for his expertise in the medical management of mental health
issues and psychopharmacology; and Paul Bower who has also assisted with the editing and formatting.
Avril Brereton, January 2008
iv
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
CONTENTS
Introduction
Section One:
1.1 Autism Spectrum Disorders (ASDs) An overview
3
1.2 Adolescence and ASDs
- Changes to thinking and learning
- The social world of the adolescent with an ASD
- Communication problems
- Adjustment and Well-being
13
1.3 Transition and ASDs
- School Issues
- Managing the school environment and school work
- What can we do to help students with ASDs manage?
- Talking and working together - teachers and parents
43
Section Two:
2.1 Developing the Student Profile
57
- Gathering Information
2.2 Student Profile
59
- Profile form
- Tasks 1 – 8
- Training needs and supports for staff
- Transition checklist for school
- Information gathering checklist
Section Three:
Glossary of Terms
93
Resources
103
References
109
Appendix 1 Sexuality Issues and the Adolescent with an ASD
117
Appendix 2 Developmental Behaviour Checklist Information
129
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
Introduction
This kit was developed to supplement an Autism Spectrum Disorders: Transition to
Secondary School training day offered by the authors to teachers in secondary schools
in the Hume Region, Victoria. It is not intended to be a crash course in autism. It has
been written to provide secondary school teachers with basic information about the
core features of Autism Spectrum Disorders (ASDs) and how they affect young
adolescents and also provides templates to plan the transition and also collect relevant
and useful information prior to the student with an ASD coming to your school.
Starting secondary school can be a difficult time for many students and their families.
The transition process involves extra challenges for the student, parents/carers and
professionals when the student has an Autism Spectrum Disorder. Additional demands
usually include decision making about appropriate supports and resources, pupil visits
to the new school and parent involvement including contact with senior secondary
school staff. The transition to secondary school may be a source of considerable
anxiety for the student with an ASD, but also be stressful for parents and teachers.
Successful transition to secondary school requires careful planning and preparation
and an understanding of the specific needs of each student.
The key to successful transition is a shared understanding of each child’s symptoms of
ASD, profile of abilities and how these impact upon him/her. It is also important to find
out about the student’s learning profile and what teaching and management strategies
are currently the most successful.
Dr Avril V Brereton
January 2008
vi
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
HOW TO USE THIS KIT
This information kit has been written to assist secondary school staff to plan for and
manage the transition from primary school to secondary school for students with an
Autism Spectrum Disorder. It is to be used in conjunction with the professional
development training day.
When students make the transition from primary to secondary school they are most
often in the early stages of adolescence. It is therefore important to understand autism
and how it affects the young person and also to understand how adolescence is
affecting the young person with autism. This is a doubly difficult time for young people
who also have an ASD. Teachers need to:
•
Understand the core features of Autism Spectrum Disorders (ASDs)
•
Understand the developmental stage of adolescence and the changes it brings
in physical, cognitive and social/personality development in the young person
•
Understand the impact of adolescence on young people who have an ASD
•
Learn more about understanding and managing social, emotional and
behavioural problems that adolescents with an ASD may be experiencing
To this end, the kit is divided into three sections.
Section One gives detailed background information on Autism Spectrum Disorders
(ASDs) and how they affect the young person’s emotions and behaviour. This is
followed by a description of typical adolescents. Cognition, social skills and
communication are discussed in light of the changes in typically developing
adolescents and adolescents with autism.
Section Two provides templates for transition planning and timelines and there is a
series of suggested tasks for the teacher that involves talking with the student’s parents
and current teachers to gather important and relevant information about the student to
build up an accurate and relevant student profile.
Section Three provides a glossary of terms, a list of reference material and useful
resources, including relevant websites and two appendices, the first about managing
sexuality issues and the second with information about the Developmental Behaviour
Checklist and its uses.
vii
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
viii
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
SECTION ONE
1. AUTISM SPECTRUM DISORDERS: AN
OVERVIEW
2. ADOLESCENCE AND ASDs
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
2
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
1.1 AUTISM SPECTRUM DISORDERS: AN
OVERVIEW
Autism, first described by Kanner (1943) is one of a group of disorders known as
Pervasive Developmental Disorders (PDDs). PDDs include Autistic Disorder,
Asperger’s Disorder, Rett’s Syndrome, Childhood Disintegrative Disorder and
Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS).
PDDs
Autistic
Disorder
Asperger’s
Disorder
Rett's
Syndrome
Childhood
Disintegrative
Disorder
PDD-NOS
More recently the term autism spectrum disorders (ASDs) has been used. ASDs
include Autistic Disorder, and Asperger’s Disorder and Pervasive Developmental
Disorder - Not Otherwise Specified (PDD-NOS).
ASDs
Autistic
Disorder
Asperger’s
Disorder
PDD-NOS
PDDs/ASDs are neurodevelopmental disorders that cause substantial impairments in
social interaction and communication and the presence of unusual behaviours and
interests. Many people with ASDs also have unusual ways of learning, paying attention,
and reacting to different sensations. The thinking and learning abilities of people with
ASDs can vary—from gifted to severely challenged. An ASD begins before the age of 3
and lasts throughout a person's life.
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
A. Autism – what is it?
Autism is a syndrome consisting of a set of developmental and behavioural features
that must be present for the condition to be diagnosed.
The core features of autism include impairment in three main areas of functioning;
(i)
social interaction,
(ii)
communication,
(iii)
play and behaviour (restricted, repetitive and stereotyped patterns of behaviour,
interests and activities) (APA 1994)
1. Social impairments
One of the key features of autism is abnormality in interpersonal relationships, such as:
reduced responsiveness to or interest in people, an appearance of aloofness and a
limited or impaired ability to relate to others. Infants with autism often do not assume a
normal anticipatory posture or put up their arms to be picked up and often do not seek
physical comfort. However they do show selective attachments to their primary
caregivers. It is not simply the case that infants with autism do not develop social
relating skills. It is more true to say that the quality of the relationship is abnormal.
Children with autism show very little variation in facial expression in response to others,
generally have abnormal eye contact and tend not to engage in social imitation such as
waving bye-bye and pat-a-cake games. They rarely develop an age-appropriate
empathy or ability to understand that other people have feelings. Their ability to make
friends is absent or distorted and they are usually unable to play reciprocally with other
children. All children with autism show social impairments, however, the nature of
these impairments can vary and may modify as the child grows older. For example,
there may be an increase in interest in other people and the development of some
social skills often learned in a mechanical or inflexible manner. For example, a
teenager may lurch toward a stranger who is walking past him to try and shake his
hand because he has been taught to greet people with a hand shake.
Below is a short description by a 14 year old of his “ideal community”. It mentions
power lines and street lights, street signs, buildings, jets in the sky, restaurants and the
picture is drawn with a great sense of perspective and includes much detail. The one
thing that is missing is PEOPLE. There are no people at all in either the description or
the drawing of the “ideal community”. This is typical of the social outlook of a young
person with autism
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
2.
Communication skills
Impairments in both verbal and non-verbal communication skills are often the cause for
parents of children with autism to be first concerned and seek help. Children with
autism usually have markedly delayed and disordered speech with approximately half
failing to develop functional speech. Research supports the notion that approximately
50% of children with autism will eventually have useful speech. Children with autism
also have an impaired ability to use gesture and mime. In those children who do
develop language, the pattern of development and usage is strikingly odd. Tone, pitch
and modulation of speech is often odd and the voice may sound mechanical and flat in
quality with a staccato delivery. Some children speak in whispers or too loudly,
sometimes developing an unusual accent. Their understanding of spoken language is
5
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
often literal and they fail to comprehend underlying meaning and metaphor such as
“shake a leg”, or “pull your socks up”. A teacher may say to an unruly year 7 class “If
there is any more noise you’ll wish you’d never been born!” This type of comment is
likely to confuse the young person with autism rather than act as a warning to be quiet.
Abnormal use of words and phrases is a common symptom of autism. Echolalia
(repetition of language spoken by others) is one of the most noticeably unusual aspects
of speech. It can be either the immediate repetition of what has just been said, or the
delayed repetition of phrases. Some children repeat advertising jingles or large pieces
of dialogue, perhaps days later, from videos for no apparent reason. Echolalic speech
may serve some function, for example keeping an instruction in mind through repetition,
or be used as a means of replying to a question. Children with autism often confuse or
reverse pronouns, for example, referring to themselves as “you”. Kanner originally
attributed this to echolalia however more recent research has found that this problem
relates to the deficits that autistic children have in understanding the perspective of
another, joint attention and difficulty conceptualising the notion of self and other. Some
children have idiosyncratic speech and neologisms such as “door go by” when asking
to go outside, or calling a drink a “dorfla”.
Language comprehension (receptive language) deficits in autism are also present. Poor
understanding is probably linked to social difficulties and impairments in social
understanding. Inability to express needs by words or gesture, or a significant
difference in the child’s ability to use words compared to their level of understanding of
the verbal responses of others, is a source of frustration and can cause distress or
disturbed behaviour.
Even those children with autism who develop a wide vocabulary and expressive verbal
skills show difficulty with the pragmatic or social use of language. They have impaired
ability to initiate conversation, communicate reciprocally with others and maintain the
“to and fro” of a conversation. The child with autism is more likely to talk at you rather
than with you, to intrude and talk out of context and use speech as a means to an end
rather than engage in a social conversation. Howlin (1998) described the “failure to use
communication for social purposes” as the most characteristic feature of the language
deficit in autism.
3.
Play, Obsessive interests, Attachment to objects
Children with autism usually have rigid and limited play patterns with a noticeable lack
of imagination and creativity. They may repetitively line up toys, sort by colour, or
collect various objects such as pieces of string, special stones or objects of a certain
colour or shape. Intense attachment to these objects can occur with the child showing
great distress if these objects are taken away or patterns disrupted.
Older children may develop play that superficially appears to be creative, such as reenacting the day at school with dolls and teddies, or acting out scenes from favourite
videos. Observation of this type of play over time often reveals a highly repetitive,
formalised scenario that does not change and cannot be interrupted. Children with
autism rarely involve other children in their play unless they are given a particular role
in a controlled situation. Howlin (1998) drew a parallel between the pervasiveness of
the language disorder in autism and the child’s inability to develop normal, imaginative
6
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
play patterns. The stereotypies seen in language are also observed in the repetitive,
non-social and ritualistic play of children with autism.
Interest in specific topics or objects often develops in early childhood and persists into
adolescence. One example is of a teenager who had an intense interest in trains
throughout his preschool years. He played with them, talked about them and drew
pictures of them. He now has a great interest in independent train travel and knows all
of the train stations in the metropolitan area he lives in and will travel to country areas
to draw pictures of railway sidings and country train stations. Some of these drawings
are below.
4.
Ritualistic and Stereotyped Interests or Behaviours
Ritualistic and compulsive phenomena are also common, such as touching
compulsions and rigid routines for daily activities. There is often an associated
resistance to change in routine or the environment so that the child may become
extremely distressed if, for example, a new route is taken going to school, the furniture
in the house is rearranged, or the child is asked to wear new clothes.
Hand and finger mannerisms and repetitive complex body movements of a stereotyped
kind such as hand flapping or tip toe walking are common. There is often a fascination
with movement of objects such as spinning a plate or wheel. Close visual scrutiny of
the fine detail of an object such as the edge of a table, or pattern of spokes on a wheel
is common as is the collection of objects such as buttons or twigs.
Many children with autism, especially in middle to late childhood, have unusual
preoccupations that they follow often to the exclusion of other activities. These may
involve a fascination with bus routes or train timetables in association with repeatedly
asking questions to which specific answers must be given.
Here are some drawings by a 13 year old who has been interested in trains since he
was 2 years old. First he loved all things to do with Thomas the Tank Engine, including
insisting on wearing only Thomas t shirts and socks, to the present, with most of his
leisure time spent watching trains and doing detailed and precise drawings of the
railway siding, boom gates and trains that pass through his local rural station.
7
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
5.
Associated features
Many other abnormalities are associated with autism such as unusual dietary habits,
sleep disturbance, abnormalities of mood and self-injurious behaviour. Perceptual
abnormalities such as lack of response to pain, heightened sensitivity to sound and
preoccupation with tactile stimulation are also common. These associated features are
not specific to individuals with autism and may occur in other children with intellectual
disability.
6.
Cognitive abilities & IQ scores
Cognitive deficits are a fundamental aspect of the disability of autism. Although Kanner
stated that children with autism possessed normal cognitive potential and “islets of
ability”, it is now quite clear that the majority of children with autism have intellectual
disability. In most epidemiological samples approximately 50% of cases exhibit severe
intellectual disability, 30% mild to moderate disability and the remaining 20% have IQ’s
in the normal range. Low IQ scores are more likely to be associated with the
8
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
development of epilepsy. One third of intellectually disabled children with autism
develop epilepsy whilst only approximately one in twenty of those with normal
intelligence do. IQ scores of children with autism often show an unusual and distinctive
pattern of performance on standardised tests of intelligence.
Individual profiles usually show a wide scatter of abilities with deficits in verbal
sequencing and abstraction skills although rote memory may be relatively better. Tasks
requiring manipulative, visuo-spatial skills or immediate memory may be performed
well, such as Block Design and Object Assembly. These skills may be the basis of
“islets of ability” such as musical ability shown by a few children with autism.
Around 20% of children with autism have overall cognitive abilities in the normal range
and are referred to as “high functioning”, but still usually have the pattern of a relatively
wide scatter of abilities. The cognitive deficit is as much social as intellectual and
linguistic. Rutter (1983) contended that these cognitive deficits are basic to the
condition of autism and not secondary features. It has been found that such deficits are
present in virtually all children with autism and that they constitute the most powerful
predictors of functioning in later adolescence and early adult life.
Autism – does it change over time?
Yes, autism does change over time. Stone (1997) described the classic picture of
autism in a young pre-school aged child as one who exhibits a marked lack of interest
in others, failure in empathy, absent or severely delayed speech and communication.
Marked resistance to change, restricted interests and stereotyped movements may
develop or become more noticeable after 3 years of age.
Many parents find the pre-school years most difficult to manage but, with early
intervention and education, improvement can be expected. With education and training
primary school aged children usually become more socially responsive and
communication skills increase. Self-stimulatory behaviours, problems in coping with
change and transitions and disruptive or compulsive behaviour may increase at this
time.
Adolescence can also bring the development of symptoms such as aggressive and
oppositional or obsessive compulsive behaviour, and an increase in anxiety, tension
and mood disturbance. Depressive illness is not uncommon and is probably due to a
combination of the development of some degree of insight as well as hormonal and
central nervous system (CNS) functional changes (Prior & Tonge, 1990; Wing, 1988).
Seltzer, Krauss, Shattuck, Orsmond, Swe and Lord (2003) described the symptoms of
autism spectrum disorders in 405 individuals between the ages of 10 and 53 years.
They found that using the Autism Diagnostic Interview-Revised (ADI-R) only about 55%
would now meet diagnostic criteria for autism. This study supports previous findings
(Boelte and Poustka, 2000; Gilchrist, Green, Cox, Burton, Rutter and LeCouter, 2001;
Piven, Harper, Palmer and Arndt, 1996) that autism is not a static disorder but that
there is “a pattern of improvement from childhood to adolescence and adulthood” and
for most individuals, some abatement of symptoms over time (Seltzer, 2003, p. 577).
9
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
There is a relatively increased risk for the development of seizures in adolescence.
Estimates indicate that that 25% to 40% of people with autism develop epilepsy before
the age of 30. Gillberg and Steffenberg (1987) noted an increased risk for boys.
B. Asperger’s Disorder - what is it?
One year after Leo Kanner’s original paper on autism, Hans Asperger published a
paper in 1944 that formed the basis of what was to become known as Asperger’s
disorder. Both Kanner and Asperger trained in medicine in Vienna, but unlike Kanner,
who moved to the USA, Asperger remained working in Europe. Asperger and Kanner
were apparently unaware of each other’s work, probably because of World War II.
Asperger’s paper remained relatively unknown as it was published in German and was
not widely available in translation.
Asperger’s paper described a group of children and adolescents who had deficits in
communication and social skills, had obsessional interests and behaviour, disliked
change and had a dependence on rituals and routines. In addition many were
physically clumsy. Unlike the children described by Kanner, the children in Asperger’s
paper generally had no significant delays in early cognitive or language development.
Asperger described this condition as autistic psychopathy. There has been increasing
interest in Hans Asperger and his syndrome over the past twenty years. In the early
nineties, Asperger’s paper was translated by Frith (Frith, 1991) and became more
widely available. Since that time Asperger’s disorder has been more frequently used to
describe a group of children who presented with developmental deficits in social skills
and behaviour but were difficult to classify.
Is it different from Autism?
For the past decade or so there has been a continuing debate as to whether or not
Asperger’s disorder is a type of autism or whether it constitutes a separate disorder.
Many publications have tried to delineate the boundaries, if any, between autism and
Asperger’s disorder. Despite the differences that can be seen when looking at the
original cases described by both Kanner and Asperger, there is continuing confusion
over the diagnostic criteria for Asperger’s disorder, particularly as subsequent accounts
and case studies have not necessarily adhered to the criteria suggested by Asperger
himself. The principal areas of inconsistency relate to early development in the areas
of cognition, motor skills and language.
The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) and the
Classification of mental and behavioural Disorders (ICD-10) have attempted to
introduce a consistent international approach to diagnosis and specify that the key
differentiation is that persons with Asperger’s disorder do not have delayed language
development which is a characteristic of Autistic disorder. Persons with Asperger’s
disorder have overall normal intellectual ability. Approximately 20% of persons with
Autistic disorder also have IQ in the normal range and are referred to as high
functioning.
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
Age of Onset
Asperger’s disorder tends to be diagnosed later than autism in young children. Neither
ICD-10 nor DSM-IV stipulates the criteria for age of onset as they do for autism.
However, in his original paper, Asperger described children as having difficulties by the
age of two.
Parents of young children with autism often recognise problems with behaviour and in
particular, language development by about 18 months to two years of age. Because
children with Asperger’s disorder do not have delayed early language, or problems with
cognitive development, there are few early signs that all is not well. It is more usual for
parents to become concerned about their child’s emerging unusual or odd behaviour
and social development but these tend to be identified later, usually from about 3 to 4
years of age. Diagnosis of Asperger’s disorder may not occur until the child has
attended pre-school or some other early childhood setting such as crèche. This is
probably because the child’s social and behavioural problems become more noticeable
when the child is seen with peers in a more structured social setting where there are
more demands for social interaction.
Causes
There is widespread agreement that genetic factors predominate as the primary cause
of Asperger’s disorder. Asperger himself noted that in all cases where he studied the
family closely, similar traits were found to some degree in parents and other family
members. Later studies have found similar autistic traits in the relatives of young
people with Asperger’s disorder.
Some examples of how Asperger’s disorder affects children
• Acquisition of language follows a normal or even accelerated pattern, but
content of speech is abnormal - pedantic, and may centre on one or two
favoured topics.
•
Little facial expression, vocal intonation may be monotonous and tone may be
inappropriate.
•
Impairment in two-way social interaction including an inability to understand the
rules governing social behaviour. May be easily led.
•
Problems with social comprehension despite superior verbal skills.
•
Very rigid, prefer structure.
•
Well developed verbal memory skills, absorb facts easily, generally good level of
performance at maths and science.
•
Highly anxious with a dislike of any form of criticism or imperfection.
•
Most attend mainstream schools and are often victims of teasing which causes
withdrawal into isolated activities.
•
Are seen to be “odd” or “eccentric”.
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
Who is affected?
ASDs occur in all racial, ethnic, and socioeconomic groups and are four times more
likely to occur in boys than in girls (Muhle et al., 2004). Recent international research
(Chakrabarti and Fombonne, 2005) now suggests that the best estimate for the
prevalence of all autism spectrum disorders is 60 per 10,000 population. A three year
study commissioned by the Australian Advisory Board on Autism Spectrum Disorders
into the prevalence of autism, concluded that there is a prevalence of 62.5 per 10,000
or one in 160 Australian children aged between 6 and 12 years have an autism
spectrum disorder (ASD) (Wray and Williams, 2007). The form and degree of features
may change markedly as the child grows older but the core social, communication and
behavioural difficulties persist.
12
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
1.2 ADOLESCENCE AND AUTISM SPECTRUM
DISORDERS:
What is adolescence? What changes does it bring to thinking &
learning?
Let’s consider the stage of adolescence in relation to cognitive development. If
you understand the changes that are going on in the adolescent’s thinking, it
may well help you to understand him/her better and help you to choose
management strategies that best suit their age and stage.
Adolescence – A time of change: the period and process of
development from child to adult.
The word adolescent is derived from the Latin word adolescere to grow. Now we use
the term adolescence when we refer to young people who are no longer children but
are not yet adults. Adolescence begins at the time of puberty when sexual development
begins, at around 11-14 years of age. It ends with the social transition to independence
from the family but there is no clear marker of when that time is. In our society, some
young people are not independent of their parents until their early twenties.
Cognitive development
Adolescence brings about changes in thinking in the young person. Piaget (1952)
developed a cognitive-developmental theory to explain the development and
functioning of the mind. The pre-adolescent thinks in a concrete way, speaking of
specific people, events and objects. He/she cannot understand concepts such as the
relationship between the individual and society. In most children thinking becomes
more abstract between eleven to fourteen years of age. By fourteen years of age the
adolescent can conjure up make believe situations, think about hypothetical
possibilities, what might be, the future and the remote. For example an adolescent can
think about what he/she is thinking about and reflect on his/her thoughts. As thought
becomes more abstract, the adolescent begins to understand that a community of
people is bound together by largely invisible rules and obligations (Hoffman et al.,
1988). This ability to deal with abstractions and logical possibilities was described by
Piaget (1952) as the stage of formal operations, the final stage of cognitive
development.
Some adolescent feelings and behaviours arising from changes in cognition
(thinking)
• Improved ability to use speech to express self
• Mostly interested in the present, with limited thoughts of the future
• Rule and limit testing
• More consistent evidence of a conscience and sense of morality
• Realization that parents are not perfect
• Self preoccupation and tendency to take things personally (self reference)
• Inconsistent beliefs, ideas and behaviours from the general to the particular
13
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
Stages in Piaget’s cognitive-developmental theory
Stage
Sensorimotor
Age
Infancy (birth -2
years)
Major Characteristic
Thought confined to action schemes.
(The baby’s knowledge grows from the
interaction between objects and
actions).
Preoperational
Preschool (2 – 7
years)
Representational thought. The ability to
think about objects and people that are
not present. Symbolism e.g. scribbles
and shapes to represent people, cars,
houses and the emergence of pretend
play.
Egocentric – can only see things from
their own point of view not another
person’s.
Intuitive thought not logical. (From
about 4 years the child is sure about
what he knows but does not know how
he knows it!)
Concrete
operational
Childhood (7 to 11
years)
Formal operational
Adolescence and
adulthood
(from about 11 years)
They ask lots of questions and are
interested in reasoning and finding out
why things are as they are.
Children can think systematically and
logically but thought is anchored to
concrete experiences. They have
conservation e.g. amount stays the
same or is conserved even though the
shape may change, and classification
skills e.g. the same person may be a
father, brother and son, but need to
have objects and events present to
reason about them.
Formal operational thought is far more
abstract than a child’s earlier thinking.
Adolescents can think in terms of
propositions such as “If…..then”, can
now conjure up make-believe
situations and think about hypothetical
situations.
Logical thought begins and the
adolescent can devise a plan to solve
a problem and systematically test
possible solutions.
14
Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
How does the adolescent with autism usually think?
Frith (1989) described the core attribute common to all people with autism as “the
inability to draw together information so as to derive coherent and meaningful ideas.
There is a fault in the predisposition of the mind to make sense of the world” (pp.186187). Tis problem with information processing is the cause of the cognitive
characteristics typically seen in autism.
The severity and impact of these characteristics on the learning process will vary for
each individual with autism.
•
rigid thinking
•
difficulty in understanding exceptions (a rule is a rule).
A rule is a rule:
Sean was banned from playing basketball because he would argue
with the umpire about decisions he thought were against the rules
even if they were in his team’s favour.
•
poor understanding of irony, metaphor, sarcasm
For example: A youth with autism became upset when he observed a
teacher comment to some boys who had just broken a door:
“Well here’s a group of bright, intelligent, high achievers”
•
difficulty understanding time and the concept of time passing
For example: A teenager with autism is distressed and cannot be
reassured by his mother’s comments that they will only be in the noisy
shopping centre for another few minutes.
•
difficulty with sequencing or organising information – rely on rote memory to
retrieve blocks of information. Where does the task start and end?
•
obsessive and compulsive routines and thinking which may be difficult to
manage and interrupt at home and school. More able adolescents may often be
compelled to do things perfectly and have a strong sense of right and wrong. If it
isn’t perfect then they can’t finish the task.
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•
have difficulty making sense of or identifying their own or others’ emotions
For example: A youth with autism persisted in trying to get his
mother’s help with a computer game when she was distressed and
crying having just heard the news that her grandmother had died.
•
difficulty understanding cause and effect – unable to draw a conclusion or
inference
Mum reported:
Ben aged 12 attends his local secondary school.
He noticed a girl in one of his classes was wearing an eye patch and he approached
her pointing to her face and making the comment “You’ve got a googly eye” in a loud
voice. The girl was embarrassed and began to cry.
Ben’s mates told him that it wasn’t a very good idea to comment about something like
that to a girl. He then went up to her to apologise and explain that his mother had to
wear an eye patch just the same because of an eye operation she had last year
whereupon the girl’s best friend came up and slapped him on the face for upsetting her
girlfriend. Ben was completely perplexed about what he should have done and why he
had been hit. All he was trying to do was make conversation and then apologise when
he realised that he had upset the girl and try to explain his comment.
Ben’s 17 year old brother’s advice to him about school was: “Stay away from girls and
get your work done.” Ben thought that was a good idea because girls are just too hard
to work out!
•
focus on details and miss the central meaning – narrow interests
Missing the point:
In a recent conversation with a teenager attending high school we were
discussing what he wanted to do when he leaves school. He replied that he
wanted to be a train driver.
We discussed the subjects that he was doing at school and then I asked
what he needed to be a train driver, whereupon he replied that he needed “a
uniform with a fluorescent orange cross on the back of the coat for safety
reasons”.
Stratton, (1996) suggested that the overall result of these cognitive distortions of autism
is confusion. This confusion may lead to an adolescent with autism appearing
increasingly anxious and stressed. Stress may present as an increase in some typically
autistic symptoms such as increased stereotypic behaviours (finger flicking, pacing),
repetitive questioning, withdrawal or being ‘silly’. The confusion might also lead to
impulsive, perhaps aggressive or disruptive behaviour.
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THE SOCIAL WORLD OF THE ADOLESCENT
WITH AUTISM:
- Social skills and personality development in
adolescents with autism
- Increasing social skills
Social and Personality development
This section discusses the changes during adolescence in social skills and
personality development and the effects of these changes on adolescents with
autism.
Adolescence brings major change with regard to a person’s sense of identity.
According to psychologist Erik Erikson (1968), babies are born with some basic
capabilities and each has his/her own temperament. As a person ages, he/she passes
through eight developmental stages (Erikson calls them "psychosocial stages") in which
identity develops. Each stage is characterized by a different psychological "crisis" which
must be resolved by the person before he/she can move on to the next stage. If the
person copes with a particular crisis in a maladaptive manner, the outcome will be more
struggles with that issue later in life. To Erikson, the sequence of these stages is set by
nature (Berger, 2001; Shaffer, 1996). His fifth stage of identity development occurs at
the time of adolescence (12 – 18 years) and describes identity versus role confusion.
This is the crossroad between childhood and maturity. The adolescent grapples with
the question “Who am I?” Berger (2001) described this as a stage when adolescents
must establish basic social and occupational identities. They are trying to develop an
identity but also struggle with doubt about themselves and who they are, or are to
become. Adolescents are interested in finding out who they are, what they are all about
and where they are headed in life. Erikson described adolescents as entering a
“psychological moratorium” a gap between the security of childhood and the autonomy
of adulthood.
Another typical feature of most adolescents is that they have times when they are
totally self-centred, which may frustrate parents and other adults. During early
adolescence, the young person usually becomes acutely self-conscious with an “I’m me
and everyone is looking at me” point of view. Newton (1995) described the
adolescent’s preoccupation with self in this way.
“Attention focuses on all aspects of self, including physical appearance,
motor behaviour, social behaviour, language and sexuality. Teens
constantly perform for the “audience” in appearance, body movements
and talk” (Newton, 1995, p.73).
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During adolescence, friends and peers become increasingly important as the young
person deals with physical and emotional changes. For most, the society of peers is the
key social agent. Association with a particular peer group will determine dress, hair
style, use of slang, interest in music, and other interests or pursuits. Outsiders are
excluded from the peer group. During this period of self focus, adolescents also pay
particular attention to the peer group as a social form of self-regulation. “What do the
others think of me and how I look and the things I do and say?” “Do I fit in?”
Friendship groups – same sex, opposite sex, hobby groups
The social relationships between typically developing peers reach their height of
importance during adolescence. Peers provide a protective group in which to establish
independence from parents, develop social knowledge, awareness and competence.
This intense attachment to the peer group allows adolescents to begin to develop their
sense of direction for adult life. Peer groups also strongly influence both positive
aspects of behaviour, such as community service, and negative aspects such as
smoking, depending on the nature of the peer group leaders and the degree of school
and family support provided.
Making friends, feeling left out or unpopular and noticing differences in each other
become much more important. Adolescents begin to notice differences such as race,
class and gender in a way that was less important in childhood as they divide people
into groups, hierarchies or pecking orders. Their differences and similarities help them
discover who they are in relation to others. They also discover this by understanding
what others think about them.
During childhood the rules for social interaction are fairly clear and concrete. These
rules become more abstract and perhaps flexible allowing for exceptions during
adolescence, some rules are even unspoken. Socially, peer interaction has less
structure as adolescents spend more time sitting around or parading about together,
talking and watching others. Language also becomes more complex as vocabulary
develops and slang increases (e.g. sarcasm, irony and cynicism).
Early adolescence is an important time for same sex friendships and the development
of close friendships. It is these early special same sex friendships that prepare the
young person for later opposite sex friendships and adult relationships. During
adolescence, as interest in the opposite sex increases, the peer group usually changes
and become a mixed sex peer group that will eventually lead to dating and sexual
relationships. Learning to be part of activity groups is another aspect of social
development during adolescence. Many young people will join activity or hobby groups,
sporting teams or clubs at this time. Groups such as these provide opportunities to:
learn about interacting with others socially
learn about the social structure
Often young people in these groups might look up to, emulate and relate to the group
leader such as the teacher or coach, who will act as a role model or confirm the youth’s
growing sense of self. Other more distant, older young people or young adults may be
a focus of intense interest or fantasized attachment, such as a pop singer or a religious
leader.
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Temperament
The temperament of the young person contributes to his/her social learning and
participation. Some will choose small special interest-based peer groups with a limited
number of friends while others may choose to become part of a diverse group. Failure
to develop friendships, join a peer group and develop social skills involving group
participation at this stage will make it very difficult for that person to cope with the social
demands that are part of adulthood including work, independent living and relating to
other adults.
Adolescents begin to develop an awareness of others’ feelings and perspectives – an
understanding that others may view situations and experiences differently. As the
number of social experiences outside of the family circle grows they experience
different social contexts and become aware of the complex nature of social interactions
and social rules.
Some adolescent feelings and behaviours arising from changes in social /
personality development.
•
•
•
•
•
•
Struggle with sense of identity “Who am I?”
Moodiness
Interests influenced by peer group
Worries about being normal
Frequently changing relationships
Concerns about physical and sexual attractiveness to others
Social skills and personality development in adolescents
with autism
Adolescents with autism usually have to respond to changes in social skills and
personality development without the opportunity for peer group discussion and support.
In the absence of an opportunity for adolescents with autism to talk to other
adolescents, parents and teachers who have “been there” and know about
adolescence, have life experience and the maturity that comes with age can be a big
help to their adolescent with autism. It is important to recognize the complexities of this
time of change and the conflict that they will be experiencing about feelings of needing
to be an independent person and separate from parents and family.
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Warwick had heard that when you become a teenager you become
interested in sex and have a girlfriend. He knew he must be interested in
sex because he masturbated and his parents told him that was OK as
long as it was in private. But how do you have a girlfriend? He
remembered that when he was at preschool his mother told him that he
had girlfriends in his class. He got out his old preschool class photograph
and found out the names of the girls. He then consulted an old class
parent contact list and visited the girls at home. He wanted to tell them
that he was their boyfriend, so could they come out with him and have
sex. Unfortunately, but understandably, this led to police involvement,
family distress and a great sense of confusion and bewilderment for
Warwick who thought he was doing the right thing.
If parents haven’t discussed the fact that their son/daughter has autism with them
before now, he/she may well start asking questions about his/her differences at this
time. This is an important consequence of the struggle with sense of identity “Who am
I?” for the adolescent with autism.
For some families, children with autism may have started asking questions about
themselves during primary school (between about 7-9 years of age). Even if the
adolescent knows he/she has autism because it has been discussed with them earlier
in middle childhood, the changes in thinking that come with adolescence will bring new
worries and concerns.
Questions and comments such as “Why do kids tease me?”; “Why don’t I have any
friends?”; “Why aren’t they interested in the same things I am?”; “I hate autism”; “I hate
children” may arise at this time.
How do you talk about autism with an adolescent and when
is the right time?
Explaining autism to another family member or friend is not an easy thing to do. So how
difficult will it be for parents/teachers to talk to a young person about autism and will it
harm him or her?
The level of the adolescent’s understanding will definitely affect how much you are able
to talk about autism and how much he/she can take in. Autism is an abstract concept
and we know that people with autism have difficulty dealing with abstractions. However,
autism is also about behaviours and skills and difficulties of which the young person is
aware and this can be a starting point.
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One Mum reported: We never actually sat M down and told her she
was Autistic but the fact was an open matter freely spoken
about in the household and with relatives. I can't imagine
living in an atmosphere in which it was any different. It’s very
healthy for the family, especially her siblings to be able to
discuss the matter openly. At the time of the diagnosis we
told our other children immediately. It gave them a sense of
understanding that she was different. It also gave them a
sense of peace where they lowered their expectations for her
being a normal sister. Now they had a reason why she was
as she was. The word Autism itself helped them adjust to
who she had always been and who she would become.
For an adolescent who has a moderate to severe intellectual disability, it is difficult
to discuss issues about self let alone the concept of “autism” and you probably won’t
have to talk about autism with them. What parents together with school staff can be
doing throughout adolescence is:
teaching appropriate social behaviour
paying attention to personal hygiene
managing sexuality in a concrete way with visual teaching materials
helping them to identify what they can do as a simple way of forming a sense of who
they are.
More able adolescents will generate questions themselves about their problems such
as making and keeping friends, bullying at school and being criticised.
For those more able adolescents, a good place to start may be with a discussion about
themselves and their personality, their experiences and their feelings. Identity is also
formed by knowing about the family, past experiences and achievements and this can
be a source of interest through showing family photographs, school reports, first and
later drawings, and commenting about any positive aspect of the adolescent’s present
behaviour and achievements.
Ask the student to list all the things he/she thinks he/she is good at. Does he/she
have an emerging sense of self and identity? What does he/she think the future
holds?
What am I good at?
What am I not so good at?
What might I be when I finish school?
It is answers to questions such as these that will indicate how realistic his/her
expectations are about his/her future and his/her sense of self and abilities.
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A 14 year old who has been thinking about himself and his autism,
his future, and possible jobs came with this list of questions to
discuss with the child psychiatrist. (His use of the word “autistic to
describe himself in these questions is a term he uses and neither the
clinicians, family nor his teachers use the word in this way).
Will my autism disqualify me from any jobs?
Is there any exemptions for an autistic to join the defense (sic) force?
Do you know of any autistics that succeded (sic)?
Is there any planned bills to prohibit medical checks in the armed forces?
Do you know of any austic (sic) people who served in the armed forces?
Have you ever planned to find a cure for autism?
What is the chance that a child will inherit autism?
Who can I complain to if I am refused a job?
Can I get a driver’s license?
Is it OK to stay on Lovan?
Can I drink cokes and is there a limit?
If you find that the adolescent has unrealistic expectations that will lead to a sense of
failure and rejection it may be an indication that it is time to talk about what is more
realistic or possible for him/her without shutting the door on other hopes. With any
teenager it is best not to immediately oppose or reject their suggestion. Show interest,
talk around the topic but give no advice or commitments, listen to them, look at the
information they have gathered or internet material on the computer screen, then offer
to talk about it again. The teenager may gradually move away from the idea or lose
interest themselves.
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Sometimes an interest can lead to a more appropriate activity.
For example:
Charles, who has mild ID, Autism and epilepsy decided he would
become a motor car racing driver. His parents did not ridicule this idea
but showed interest in his fascination for cars, that had continued
through early and mid adolescence. His teacher enrolled him in a
learner driver introductory course and also in a motor vehicle detailing
work experience TAFE transition programme. At no time did his
parents say he would be able to drive, but after he learned the rules
about epilepsy and driving and a visit to the GP, he told his parents he
would not be able to get a licence. Charles did indicate that he hated
having epilepsy but some extra reward copies of his auto magazine
returned his usually good spirits. He now has a job in car detailing after
a successful supported work training experience.
As adolescents are exposed to the public more through the use of public transport,
outings to the pictures or joining a social or hobby group, they will be met with various
reactions from strangers, particularly if they have any odd mannerisms, unusual way of
talking, or look different. It will probably be easier for the young person who knows
he/she has autism to understand others’ reactions and avoid some situations or deal
with them more easily if they have had the opportunity to talk about this and have some
coping strategies in place. Solutions are often easier to find if you know what the cause
of the problem is. Knowing that you have autism and how that affects your behaviour
and who you are should make it easier to cope with the reactions of others in public.
Being aware of having autism may in some cases be a preventive measure that
enables the young person to understand the reactions of others to them and be less
upset by them.
A programme to introduce young people to their disorder
Recently there has been an additional approach to teaching higher functioning
adolescents and young adults about their disability. Parents and carers of children with
autism spectrum disorders often ask whether they should tell their child about their
disability and young people themselves sometimes seek information to help them
understand their own feelings and difficulties. Vermeulen (2000) responded to the
challenge of informing young people about their disorder and developed a workbook for
individual and group use. The workbook “I am special” (Vermeulen, 2000) is not a
treatment or therapeutic model in itself but is best used as part of a more general
guidance plan. Vermeulen recommends an initial meeting of all the people in the
support network around the person with autism to discuss the indications and contraindications of this approach. He also recommends that a new person with experience in
the field of autism (therapist, psychologist) be responsible for implementing the
programme rather than someone already known (parents or teachers). The advantages
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of working with a stranger are that he/she may have more authority than a person from
one’s everyday surroundings; there will be no ‘history’ so the assistant will find it easy
to take a neutral and positive attitude, and after a rapport has been established, the
person with autism should find it easier to show feelings in the setting of the confidential
session (Vermeulen, 2000).
Before starting a programme like this it is necessary to consider the following:
Why do we want to inform the person with autism about autism?
What do we expect from these sessions?
Which negative consequences should we be prepared for?
Who will work through I am Special with the person?
How will we organize the follow up?
Explaining autism to a person has to be done in stages. Each person with an ASD has
to acquire certain concepts and gain specific insights in order to be able to understand
the diagnosis. These are:
•
•
•
•
Knowledge of the body
A basic knowledge of the brain (because autism is a disorder of the brain)
Understanding the difference between people’s inner and outward appearances
Understanding the concepts of ‘illness’, ‘disorder’, and ‘disability’
When the person has gained these insights, they can be combined into a ‘conclusion’
about autism as being a disability not an illness due to a brain disorder, each person
has strengths and weaknesses, it can’t be seen from the outside, yet is not entirely
invisible because of the autistic person’s behaviour and social relating.
Vermeulen (2000) describes the target group as children, young people and adults with
an autism spectrum disorder. Because the goal of the workbook is to get to know
oneself and one’s autism better, a minimum developmental level is required: verbal
development level of about 9 years and a minimum social development level of about 4
years. In general children with IQ > 90 aged 10 and over and with adolescents IQ >70
aged 12 and over should be able to understand this material.
Worksheets cover topics such as:
•
•
•
•
•
I am unique: My outside
I am unique: My inside
My body
Being different
Autism: A special disability
This is an interesting but challenging approach to working with young people with
autism that requires careful preparation, thought and ongoing support and follow up
with all those involved in the programme.
“Pictures of Me”
Another approach, perhaps more suited to young people with more limited intellectual
ability, is the progressive completion of a life story loose leaf album called “Pictures of
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Me” designed by Carol Gray (http://www.thegraycenter.org/Social_Stories.htm). This biography
relies more on photographs and pictures and emphasizing the positive aspects of the
young person, details of their family, where they live, relationships, interests and other
concrete attributes such as height and weight. It also refers to autism in a way that is
appropriate to the teenager’s capacity to understand. This book can also be used to
contain social stories and other social skills activities such as “Susan catches the bus to
Grandma’s” or “Warren goes to a new school”.
General approaches to teaching social skills to adolescents
with ASDs
Social skills and social awareness are usually taught using a combination of incidental
and structured teaching techniques.
Incidental teaching: aims to teach a social skill as it is occurring in a naturalistic
setting so the adolescent can pick up on social cues, rules, others’ feelings and
perceptions. This method involves explaining what is happening in a social interaction
either verbally or with visual cues.
Structured teaching: uses a range of strategies through the use of visual cues,
modelling, and role-play. More specifically, these strategies include the following:
Behaviour Scripts (cognitive picture rehearsal) can be used to help control or redirect
behaviour but are also useful to teach appropriate social responses in a given situation.
They are most relevant to those people with autism who have better visual skills and
understand pictures, logos, photographs or line drawings more easily than spoken
instructions. Behaviour scripts provide visual rules that are easily understood and have
the advantage of being a constant visual reminder. For those young people with autism
who have problems with short term auditory memory or concentration, written rules are
particularly useful. These scripts allow the person to rehearse appropriate behaviour
and also provide opportunities to reinforce outcomes for appropriate behaviour. An
added advantage is that the script is portable and can be easily carried by the adult
who is working the person with autism to be used when the situation demands. The
script, for example, a small book of “Rules for School”, can also be carried in a pocket
by the person with autism, to remind him/her of the appropriate behaviour. These are
the steps involved in developing a behaviour script:
•
•
•
Behavioural observations to identify key features: define the problem,
antecedents, consequences and function of the behaviour, (work out the ABC
pattern, use Developmental Behaviour Checklist (Einfeld and Tonge, 2002) etc.
and identify key people in managing the problem.
Choose a format. What visual cues does the person understand? E.g. picture
symbols, photographs, words. Layout could be a book, wallet of pictures, chart
etc.
Write the script. Use some key words that relate to the pictures or perhaps the
words that are actually said by the person during the script rehearsal.
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•
Trial the script after discussing its use with the key people involved. Review,
rehearse and remind the person of the consequences of both the desired and
unwanted behaviour. It is always best to reward the appropriate behaviour rather
than “punish” the negative behaviour.
Social Stories. These were developed by Carol Gray (Gray, 1996). Short stories are
written in a particular style and format that describes social situations and common
responses. They include four basic types of sentences:
Descriptive: Define where a situation occurs, who is there, what they are doing and why
Directive: Positive statements of the desired response (e.g. “I can…” or “I will…”)
Perspective: Describe the reactions and feelings of others
Control: Describe visual images that may help in recalling, understanding and applying
abstract information (Gray, 1996).
Here is an example of a simple social story for Jack, a 12 year old who did not know
how to greet strangers appropriately. He usually bounded up to visitors and shouted
“Who are you?” This social story was used in conjunction with opportunities for Jack to
practice greeting people he met socially at the local church and when on outings with
the family. He also had a photo book of how to greet people that showed photographs
of people shaking hands, smiling and looking at one another that had been cut from
magazines and photographs from family gatherings where relatives were greeting each
other.
When visitors come to our house:
Sometimes people who I don’t know come to our house. They are
visitors.
Mum or Dad will introduce me to the visitors and tell them my name.
I will shake their hand and say “Hello”.
Visitors will be happy when I shake their hand and say “Hello”.
This type of social story will be even more effective if the visitors can be forewarned
and so play their part exactly.
Rule books. For those young people with autism who can read or link written words
with pictures, a rule book can be useful and carried in the pocket as a ‘security blanket’
if they are in doubt about appropriate behaviour in a given situation. These rule books
should be developed with input from the young person with autism and those involved
in their education or care. Some children prefer to write in their rule book themselves
and illustrate them as well. The rule book can be added to as required and may
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eventually become a guide for appropriate behaviour in many different situations, or
alternatively be used to manage just one, specific behaviour.
Social Skills Groups. These groups can include the involvement of competent peers
to teach social interaction skills or are sometimes autism specific groups. Role-play
activities and the use of video can be used to teach and practice social skills and
enable the participants to observe and reflect on their behaviour and practice correct
responses. The groups should focus teaching the “how” of behaviour rather than the
“why”. Talking only groups may be difficult for the young person to keep up with and
might even act as a stress and lead to resistance or anxiety. Some more able
teenagers might respond well to drama classes but usually need to be able to engage
with these activities at their own pace.
Comic Strip Conversations. These depict social situations in a simple picture format
with text and cartoon bubbles denoting what the characters are saying and thinking.
These can be filled in earlier for the teenager to read or they can be used in a peer
group or family situation to build up a conversation.
For example, each member of the family might have cards with their name or picture on
it together with a speaking balloon. The father might start by writing and saying “Would
anyone like to watch TV now?” but be thinking “I am tired from work and want to sit
down”, and the mother might reply and have her thought in a script that has the aim to
help their son allow other members of the family to watch TV shows other than his
video tape of the last match of his favourite football team.
Each person involved in the conversation draws while s/he talks to illustrate social
concepts or ideas. Comic strip conversations identify what people say and do and what
they may be thinking.
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COMMUNICATION AND THE ADOLESCENT
WITH AUTISM:
- Typical language development
- Language development in adolescents with an ASD
Normal language development during adolescence.
This section discusses the development of language during adolescence. The
adolescent with an autism spectrum disorder, whether more or less able,
continues to have some difficulty with both expressive and receptive language.
Along with changes in thinking, social awareness, and emotional development, there
are also developments in language and communication ability during adolescence.
Typically, the following occur:
•
•
•
•
vocabulary continues to increase as abstract or more complex words are added
the adolescent grasps irony and sarcasm
understanding of complex grammatical forms continues to improve
adolescents can make subtle adjustments in speech style, depending on the
situation
What about for adolescents with autism?
Verbal Adolescents
About 50% of adolescents with an autism spectrum disorder will have developed
functional speech by now. They probably began to speak later than is normal and their
speech would have been acquired more slowly. It is common for adolescents with an
ASD to continue to have both delayed and disordered communication. Higher
functioning adolescents continue to have problems with both expressive and receptive
language. These problems affect all areas of learning. The deficit for the higher
functioning adolescent is the ability to communicate effectively socially with others.
They may use language to meet daily needs but still have problems with understanding
and responding to conversation. An interest in humour, perhaps quirky or slapstick may
develop e.g. Mr. Bean. This might even reflect an emerging recognition in the young
person of their own quirkiness.
Communication problems in adolescents with an ASD present in a number of different
ways with different outcomes according to the problem, type and severity. The
receptive language of adolescents with high-functioning autism generally remains
impaired. Difficulties with receptive language skills are most evident in a social context
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and often appear to worsen as the child gets older, as we expect their competence to
increase. Consequently, adolescents with an ASD are often misunderstood and thought
to be rude or uncooperative.
Receptive language problems
•
•
•
•
•
•
Difficulty understanding abstract concepts such as emotions and humour
Difficulty understanding others’ gestures and facial expressions
Difficulty understanding a sequence of instructions and then following them.
Literal interpretation of words & phrases
Slow response to verbal questions or information
Difficulty attending to others particularly when focussed on a activity of interest
or when a task is incomplete
Expressive language problems
Ability to speak usually improves during childhood but adolescents with autism still
have difficulty with initiating conversation or adequately expressing themselves
particularly in a social context. Examples of expressive difficulties are:
•
•
•
•
•
•
•
•
Difficulty telling others what they are doing, supposed to be doing , or have done
Persistence of echolalic speech but this might now be delayed
Unusual intonation, pitch, volume
Inability to express frustration until it has built to a point where they have passed
their tolerance limit
May talk or question constantly
Difficulty with putting emotions into words
Impulsive outbursts of language (poor impulse control) which may be irrelevant,
naïve, or insensitive, e.g. “Look at that lady Mum, doesn’t she smell”.
Difficulty initiating and sustaining a conversation, wandering off the point, or
directing any conversation back on to a favourite topic such as road maps or
dinosaurs
Problems with comprehension and expression can lead to misinterpretation of
behaviour in young people with autism. For example, repetitive questioning in class
may be seen as attention-seeking behaviour when it is in fact due to the student’s
inability to understand the task set. The student may also speak out in class and this
may also be misinterpreted as attention seeking behaviour, but is due to the student’s
inability to understand which questions are meant for him or that other people may
have something to say.
Communication problems will impact on adolescents’ behaviour. It is therefore
important that those working with the student understand the type and severity of the
communication problems he/she continues to have, in order to work out more effective
ways of communicating together and also finding possible explanations of behavioural
problems that may be linked with communication problems.
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How do these language problems affect the behaviour of verbal
adolescents?
Problems with the adolescent’s use of, and understanding of, language can be seen to
affect behaviour in a number of ways. It is important to keep these communication
problems in mind when trying to determine the cause of specific behaviour problems
and include them in your thinking.
It is also important for others who come into contact with the young person with autism,
such as teachers, family friends, relatives and respite care workers to understand how
he/she communicates and how communication problems may still be affecting his/her
behaviour.
Unfortunately, speech therapy may come to an end once the young person is able to
speak well enough to have every day needs met. In reality, assistance with learning
how to understand and use language socially is often a major problem justifying the
continuance of speech therapy focusing on pragmatics (social use) of language.
(i)
Echolalia may be irritating and annoying to listen to, but may still serve a
number of useful functions for the young person. Repeating what has been said
may be helping the adolescent to understand what has been said to him by
repeating the sentence and going over it out loud. For some adolescents,
echolalia increases in situations where they are tense and anxious and may be a
sign to watch out for.
(ii)
Tone, pitch & modulation can be problematic. For example, a young person
who speaks too loudly can upset others with loud comments. Put a loud voice
together with someone who naively makes comments about people and the
result can be embarrassing for everyone. This situation may be interpreted as illmannered when it is, in fact, part of the problem of voice production. When a
little child speaks in a sing-song voice or whispers it can be seen as cute. When
a thirteen year old does this the cuteness factor has definitely worn off.
(iii)
Poor comprehension can mislead others into thinking the young person is
being uncooperative or cheeky. Poor understanding or literal interpretation of
what is said is common. If you want him/her to follow an instruction, it is better to
state the request directly and unambiguously and then check to make sure that
s/he understands. Written instructions can be helpful and the use of pictures
may clarify things for less able adolescents.
At home:
Frank a 13 year old adolescent with autism was told by Mum who
was outside gardening to “Pick up the phone”, when it rang. The
phone continued to ring and when she finally came inside she found
Frank standing in the kitchen holding the whole phone in the palm of
his hand!
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(iv)
Literal interpretation of what others say is yet another situation where the
adolescent’s behaviour may appear to be smart or rude. We frequently use
metaphor and sometimes sarcasm which the young person with autism does not
understand.
At school:
1. The teacher said “Well done!” to Andrew when he dropped all his
books on the floor:
Andrew said to his Mum when he got home: “I thought I’d be in trouble
but Mrs X said well done. Is it OK to drop things on the floor?”
2. Susan aged 13 with mild ID was frequently put outside the
classroom by the teacher for being rude and interrupting the lesson
with inappropriate laughter. The teacher would often preface a
comment with “You may find this funny, but…” and at the same time
smile in an affiliative manner at the class.
Susan took this as a behavioural prompt and laughed uproariously in
an effort to please the teacher. It was no wonder that she was
distressed and perplexed when put outside the classroom.
(v)
Repetitive and stereotyped speech such as repetitive questioning can be very
difficult to cope with. Either of these may be occurring because the adolescent
actually wants to have a conversation but does not know how to go about it.
What seems like annoying behaviour may be a lack of skill in initiating and
sustaining a conversation. If this is the cause for the behaviour, then an effective
response will be giving him/her some help with conversation starters and topics.
If you have wrongly assumed that the young person is asking annoying
questions simply to get your attention, ignoring him/her will either make the
situation worse or quite possibly make him/her give up attempts to talk with you.
(vi)
Complex or abstract language is used much more by adolescent peer groups.
Typically developing peers use slang, sarcasm, irony and cynicism in their
everyday interactions. Think about some of the common slang used by
adolescents today such as “sick”, “cool” and “wicked”. These can be very
confusing for the adolescent with an ASD who, for example, has learned since
he was little to tell Mum when he feels sick.
Higher functioning adolescents with more verbal skills can appear to be superficially
quite competent. They can get into all sorts of trouble because they appear to be very
competent and it is difficult for other people who don’t know them well to understand
that understanding and using language is not easy for them.
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Sean was persistently in trouble with the Year 7 Science teacher for not
attending to his Science workbook in class. It emerged that Sean was
continuing to work on his English workbook from the preceding lesson
because the English teacher had written at the top of the English
workbook:
“This sheet must be finished before the next lesson”.
Non-Verbal Adolescents
Approximately 50% of adolescents with autism will not have developed functional
speech. It is still not clear why this is so. Some argue that it is because children with
autism have such strong underlying social deficits and problems with joint attention.
Others argue that it is because in autism there is a basic lack of understanding that
people have thoughts and feelings that can be related to in the first place. Whatever the
cause, adolescents who are non-verbal have to get their message across about their
needs and desires to others in some way other than speech. Over recent years it has
become increasingly clear that there is a significant link between the child’s problems
with communication and understanding and behavioural difficulties.
Improving Non-verbal Communication using Augmentative &
Alternative Communication systems (AAC).
Follow up studies have shown that for most children with autism who do not have
useful speech by about the age of 7 years, it is likely that their ability to communicate
verbally will remain severely impaired. It is important for these children to have some
form of augmentative communication system. Augmentative communication helps
children who don’t have speech to communicate by using other systems. These
systems are called “augmentative” because they augment or increase the strength of
the person’s power to communicate.
Simple pictures and line drawings such as Compic, signing systems such as Makaton
and also photographs or objects are often used to augment communication for
adolescents with autism. Each individual must be carefully assessed to determine
which systems will suit him/her. AAC interventions should always be multimodal in
nature, that is, they should utilize each person’s communications capabilities, including
any limited speech, gestures, signs, and aided communication.
Visual strategies can be effectively used with adolescents at all levels of ability to:
•
•
•
•
•
•
•
Improve receptive & expressive language
Teach to the adolescent’s strength
Gain & maintain attention
Support appropriate behaviour
Develop social skills
Decrease anxiety
Increase success
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The choice of system to help improve the person’s communication will depend upon
his/her level of cognitive and language ability. By this stage in each adolescent’s
education, an individualized communication programme should have been developed
to maximize his/her opportunities to communicate effectively. It is important that this
programme be used in the school wherever the student is, and whoever the student is
with, to ensure that he/she can communicate as effectively as possible across settings.
1.
Photographs
Photographs of objects and people in the young person’s world can continue to be
used effectively with less able adolescents who cannot master the use of symbols or
line drawings. The photograph must be simple, clear and uncluttered. Once the
adolescent is able to recognize a number of photographs, a photo vocabulary can be
built up. Photographs can be used to help the person understand time tables or the
steps involved in completing an activity. For example, the classroom may have
photographs of the day’s activities pinned to the wall. When each activity finishes, the
adolescent may put away that photograph. Similarly, when he/she is required to get
dressed, the steps involved may be pinned to the bedroom door in the correct
sequence and easily followed. A great advantage of photographs is that the young
person can attend to them for as long as he/she needs to, and also return to them to
refresh his/her memory.
2.
Pictographs
Pictographs (COMPIC, PCS, Boardmaker) are very successfully used in many teaching
programmes. These pictures consist of very simple and clear line drawings that
represent a wide range of objects, actions, feelings etc. They can be used initially at a
very simple, but practical level with young children who learn to point at the picture or
show the picture to indicate their needs. When children are familiar with a number of
these pictures, they can be put into a wallet of pictures that is carried and taken out to
indicate needs. The child gradually builds up a vocabulary of pictures to meet his/her
own special needs. This communication programme should continue throughout middle
childhood and into adolescence, with an expanding picture vocabulary that is relevant
to each young person. It should reflect his/her interests, activities, school and home
routines and a range of emotions, behaviours and feelings.
Strategies for receptive language
• Object symbols
• Calendar boxes, activity schedules & timetables
• Finished strategies (wait, soon…)
• Behaviour Scripts
• Social Stories - “What to do”
Strategies for expressive language
• Picture communication dictionary
• Object symbols
• Electronic Communication Aids
• Picture Communication Exchange System (PECS)
• Community request Cards
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How to encourage communication.
There is no point in an adolescent having communication skills she/he does not use! It
can be a great challenge for parents and teachers to actually get the young person with
an ASD to use the skills they have to communicate with those around them.
Motivating adolescents to communicate is the issue here. We know that people with an
ASD often lack motivation and the social desire to communicate with others. This is one
of the basic deficits of ASDs. Our task is to make it worth their while to speak, sign, or
use pictures and objects to communicate with us.
The person with an ASD often needs a strong incentive to communicate with others. If
she/he manages to have a successful interaction with someone, it is more than likely to
happen again. At the same time, if the person’s attempts to communicate are ignored
or unsuccessful, they can be turned off fast. (Why bother to point to the picture of the
juice if no-one looks? I may as well just yell like I usually do!). We need to clearly
identify strengths, interests and motivators for each person.
Communication doesn’t occur in a vacuum. Each person needs a reason to
communicate and something to communicate (a topic, or subject). This applies whether
the person has speech, signs, uses pictures or even objects to communicate.
Remember, having something or a reason to communicate is just as important as being
able to communicate…for all of us.
How can we motivate adolescents to communicate?
•
•
•
•
Tap into their strengths & interests and structure conversations around them
Reinforce their attempts to communicate with us by listening, responding and
giving our attention
Activities with multiple components that require planning ahead, discussing
steps or sequences can provide something to talk about. (e.g. a trip on the train
to the city; playing a board game)
Novelty – introduce new activities, places and people to stimulate new topics for
conversation
How to improve our communication skills with adolescents.
One of the best ways to improve the adolescent’s communication skills is to improve
how you are communicating with him/her. There are several language stimulation
strategies that we should all incorporate into our interactions. These include:
•
Modeling The success of the intervention is based on the adolescent’s
motivation. We must work on increasing the adolescent’s opportunities for
success by being good models of AAC systems and using them across all
environments. We must value and respond to all communication messages and
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give the adolescent’s AAC system the same respect we give to the speech of
their typically developing peers.
•
Reducing the rate of speech
When we slow down our speech, adolescents
have more time to understand and then respond.
•
Reducing the length of utterances
“It’s nearly lunch time. Go and sit down
and in a minute when I’ve finished marking these projects it will be time to go
out.” or “Lunch time when the bell rings. Go to lunch when the bell rings.” Which
do you think the adolescent with autism will understand?
•
Prompts & cues About 60% of our social communication is exchanged nonverbally. Adolescents with autism have impaired use and understanding of
gestures, but are strong visual learners. We need to use visual cues and
prompts such as photos and pictographs to increase their understanding.
•
Expanding Remember to model longer phrases. For example:
Adolescent: “Drink”
Adult:
“More drink” or “I want a drink please”
•
Wait time
When the adolescent’s communication is slower than our own
speech we often fill in the pauses. But adolescents with an intellectual disability
or severe language impairment often need longer periods of time to
communicate. They may need more time to understand your interaction, or to
respond. It is important to give the adolescent sufficient ‘wait time’. This can be
as long as 10-15 seconds. It is important to observe the student to gain an
understanding of how much ‘wait time’ s/he requires.
•
Questions If we only ask questions, then it encourages mostly yes/no
answers. The other person can only respond, rather than initiate. If we overuse
questions, it encourages the adolescent to always wait for the adult to
communicate. To encourage the adolescent to initiate, we must:
Allow time for her/him to take a turn
Observe her/him for communication messages
Respond to every communicative attempt
•
Use a range of communicative functions When adolescents have very
limited speech, or are using alternative communication systems such as photos,
there is a tendency to concentrate on teaching them to label, request or answer
yes/no questions. There is a whole range of other communicative functions that
are important for effective communication.
These include:
Commenting
Requesting attention, interaction, help, information
Acknowledging
Answering
Protesting
Greeting
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ADJUSTMENT AND WELL - BEING
Understanding and managing emotional and behavioural
problems.
The section discusses the need to understand, recognise and respond to some
of the most common emotional and behavioural problems experienced by
adolescents with an autism spectrum disorder. These are illustrated by some
case studies. (Names and details have been changed to protect the identity of those
concerned)
Children and adolescents with an autism spectrum disorder are at risk of suffering high
levels of anxiety and mood disturbance, disruptive and self-absorbed behaviour as well
as communication disturbance and social relating problems. These emotional and
behavioural disturbances may persist throughout childhood and adolescence but the
intellectual and emotional development of adolescence may bring some improvement
or special mental health issues.
Anti-social behaviour
Anti-social behaviours that require social intention and awareness, such as lying,
stealing, hiding, lighting fires and truancy from school or work become more common in
adolescence but are seldom seen in autism spectrum disorders as they require a
degree of social knowledge, intent and skill beyond most young people with an ASD.
However, behaviour perceived by others as anti-social may occur in persons with HFA
or Asperger’s Disorder, as a manifestation of an obsessional preoccupation or selfstimulatory activity without social intent or understanding of the impact on others. For
example, one young man regularly set fire to the hay shed on the family farm because
he enjoyed the sight, sound and smell of the flames. For him there was no anti-social
intent associated with this fire lighting behaviour.
On the first day that Helen (aged 14) travelled home independently from school
she was caught “stealing” a figurine from a department store. The police were called
by the store that had a strict policy against shoplifting. Helen appeared to be sullen
and was mute and uncooperative. She was kept at the police station for hours until
her parents were located because they had reported her missing. It emerged that
her caring parents had promised that she could choose one of her favourite figurines
as a reward for travelling home from school by herself. This is exactly what she
had done. She could not understand the response of the store or the police and in
her distress had regressed and become mute and withdrawn.
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Disruptive behaviour
Disruptive behaviour symptoms include:
tantrums
noisiness
abusiveness
impatience
aggression
self-injury
stubbornness
These are problematic for clinicians, family, and teachers alike. In the school setting,
disruptive behaviour has been found to relate directly to a loss of productive learning
time. Disruptive behaviours are also likely to contribute to failure of integrated school
placement in a mainstream setting and placement in a more restricted special school.
High levels of disruptive behaviour also contribute to parental burden and are reported
to be the main reason for placement of children into respite care or residential care.
Disruptive behaviours are seen in young people with autism at all levels of intellectual
ability and disability.
Disruptive behaviour may become more of a problem at times of change, stress and
anxiety. The range of physical, social, educational and emotional experiences
associated with adolescence might lead to disruptive behaviour. Management involves
a variety of approaches including structured, predictable programmes, timetables,
reintroduction of visual systems of communication, social stories, environmental
manipulation to reduce anxiety and behavioural analysis and reward programmes.
Medication might also be helpful if symptoms are severe such as:
• Low does neuroleptics (Haloperidol/Risperidone drugs of choice)
• Naltrexone – may reduce self-injurious behaviour and hyperactivity.
• Anti-convulsants (eg Valproate, Carbamazepine) or Lithium particularly if there is
an episodic or cycling nature to the disturbed behaviour that is not clearly a reaction
to events.
Attention Deficit and Hyperactivity symptoms
Around 30% or more of children with autism spectrum disorders have significant
problems with:
distractibility
inattention
impulsiveness
fidgetiness
motor over activity
These symptoms occur at levels more than you would expect to see in children of their
intellectual level of development. Fortunately, these symptoms, which also interfere
with learning and social interactions, generally reduce as the child matures.
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If attention deficit hyperactivity symptoms worsen or appear for the first time in a
teenager with an ASD, then this is an indication of another problem such as anxiety
about change or stressful events, or an emotional response to a stressful life event
such as serious illness in a parent. Sometimes episodic disruptive behaviours or ADH
symptoms might indicate the onset of epilepsy symptoms or even an illness such as
urinary tract or ear infection.
Alex has an intellectual disability and autism. He is non verbal and attends a specialist
autism school. He was increasingly agitated and restless over a period of about two
weeks at school. By the third week he was running uncontrollably around the classroom
and could not settle at all. The teacher talked to the parents about this.
His parents took Alex to the GP who examined him and found that a fly had become
trapped in his ear and there were maggots in it. The ear was cleaned and Alex’s
behaviour settled immediately.
Treatment:
Management requires a broad approach including:
• planned, structured, time limited activities in simple steps
• limitation of the amount of environmental stimulation
• planning for change
• communication programmes (e.g. visual systems)
• behaviour modification
• relaxation
• and perhaps medication. The use of medications such as stimulants
(dexamphetamine or methylphenidate [Ritalin]) might have been helpful during
primary school but a trial off the medication in adolescence might indicate that
the drug is no longer necessary.
David aged 12 has autism and ADHD. He goes to mainstream primary school.
This is what he said about when he goes to school without taking his Ritalin….
“My head throbs. I start doing silly things. It’s hard to do my work and finish it.
I get a feeling I don’t want to finish my work but just want to be naughty and play
and run, run, run, run, run, run, run, run, run, run, run, run.”
David’s parents commented that he can concentrate on some things
such as playing computer games and watching television. When his attention
is anchored by visual input, such as a screen, and he has headphones on
to limit noise distraction, he’s OK.
In order to get homework done, David has to sit at a table with a completely
cleared surface, no distractions, no additional lighting or fans on and only his
workbook and pen.
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Anxiety
Young people with ASDs often have high levels of anxiety in response to the biological
and social changes of adolescence. The symptoms of anxious behaviour include:
fear of separation from familiar people
specific fears or phobias (e.g. certain sounds, smells, objects, animals)
resistance to change (e.g. new clothes, food, routines)
panic and emotional distress for little or no apparent reason
tenseness
shyness
irritability.
These co-morbid symptoms of anxiety, apart from the distress they cause the child,
have the potential to disrupt education, further impair social interaction and create
management problems and stress for the parents and carers.
The identification of anxiety in a child with an ASD creates an opportunity for
management. Psychological treatments, particularly cognitive and behavioural
approaches are effective treatments. Pharmacological treatments, such as selective
serotonin re-uptake inhibitors and tri-cyclic anti-depressants may also reduce anxiety in
children. Psychological treatments might need some modification in order to
compensate for language impairment, and the effectiveness of pharmacological
treatments need to be confirmed using baseline and follow up records of target
symptoms.
Treatment of anxiety requires an understanding of what might be causing an
anxious “fight or flight” response:
•
•
•
•
•
•
Define stressors
Modify environment
Parent education and well being so they can provide reassurance, support and a
“comfort zone”.
Modified CBT (e.g. relaxation exercises, identifying symptoms of anxiety and
anxious thoughts in order to develop positive thoughts and behaviours)
Stress debriefing (e.g. social stories)
Medications which reduce anxiety (Anxiolytics) such as SSRIs (Fluoxetine),
Imipramine, Buspirone, rarely Neuroleptics such as Risperidone.
Depression
Adolescents with an ASD are at increased risk of suffering depression and mood
disturbance. This is probably due in part to an increased biological (genetic)
vulnerability for mood disorders but is also a consequence of increasing insight,
developing an identity and the more sophisticated thinking of adolescents.
Apart from depressed mood there is a range of other symptoms including:
Irritability
sleep and appetite disturbance (inducing weight loss)
obsessional thoughts and preoccupations often of a negative or depressive nature
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compulsive behaviours, such as hand washing
apparent lethargy or slowed down behaviour (psychomotor retardation)
and thoughts of suicide with a potential to act on these thoughts.
These symptoms of mood disorder are likely to impair their education and school
adjustment, further handicap their already compromised social interactions and
interfere with the quality of their family life. Depression responds to psychological
treatments such as cognitive therapy, relaxation training, and pleasant events
scheduling modified according to the intellectual ability of the young person.
The provision of rewarding experiences such as positive comments written by the
teacher on school work or the liberal use of “good work stickers” etc, reduction of stress
at home and school and attention to parental mental health are helpful. Antidepressant
medication may also be necessary if the depression is severe or persistent.
Treatment:
•
•
•
•
•
Reward achievement
Promote self esteem (success activities, social stories)
Parent education and well being
Modified CBT (to take account of language and level of ID)
Antidepressants (fluoxetine)
Here is an example of an adolescent with autism who presented with a range of
behavioural and emotional disturbances both at home and school. The assessment of
these problems and their subsequent treatment involved some of the treatment
suggestions listed above including modified CBT, parent education, the promotion of
self esteem and the rewarding of his achievements at school and the use of an
antidepressant drug.
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Scott, aged 14, has autism and a mild level of ID
He had always been a rather placid boy content to pursue his isolated interests in
weather forecasts and drawing road maps. He has settled well into mainstream
secondary school with integration aide support. Suddenly he became irritable, moody
and uncooperative. He swore at his aide, broke pencils and left the classroom in tears.
He lost interest in the weather and his drawings. He picked at his previously favourite
foods and his parents heard him awake and muttering in his bedroom at night. He
started to ask his mother if various household items that were labelled poison would kill
you and what would happen if you swallowed them. Scott had clearly developed an
acute onset depressive illness.
There were no clear precipitating stresses or school or family problems. His mother had
a history of several depressive illnesses successfully treated with counselling and an
antidepressant drug. There was also a maternal family history of depression in other
relatives. Scott had developed negative ideas about himself and had low self esteem.
He indicated that he wanted his “autistics to go away”. He did a drawing of how he saw
himself as isolated alone in his house, separated from his family and others which he
could only draw as primitive heads.
He was clearly developing some insight into his nature and his social isolation and his
difficulty understanding the social world. Successful treatment included the use of an
SSRI antidepressant (the same as used successfully by his mother); some modified
CBT (making lists of his negative ideas and new positive ideas; scheduling pleasant
activities and relaxation exercises); work with the school to actively reward his school
work and active involvement of his parents in the interventions.
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1.3 TRANSITION TO SECONDARY SCHOOL
School Issues
The section discusses issues that arise when adolescents with an ASD make the
transition to secondary school and some suggestions to help the student
manage school work and the school environment.
What has happened so far?
By now parents have all had the experience of sending their children to school and into
the care of others. The decision of whether to send him/her to mainstream or specialist
school is now behind them for the primary years. Some parents decided to send their
child to the local primary school with or without integration support. Others decided to
send their child to a specialist school for children who have autism or perhaps a
specialist school for children who have a range of disabilities including intellectual
disability and autism.
Attending school may have been a positive experience for both parents and child or the
opposite may have occurred where parents have not had success in working together
with school staff to assist them and their child with problems he/she encountered at
school. Some parents may have even moved their child from one school to another
because of these difficulties. The struggle to obtain integration funding to support their
child’s school placement has been, for some parents, distressing and unsuccessful,
while for others, support was in place from the first day of school and the school
environment has been supportive, parent friendly and most importantly autism friendly.
Whatever parents’ experiences and their child’s experiences have been to date, more
change is inevitable as children reach adolescence. Transition to mainstream
secondary school will be occurring for some adolescents at the age of about 12. For
children who have been at specialist autism school, it is now time to move on to other
specialist settings or perhaps mainstream at this time. Some children will be moving to
an educational setting that no longer provides integration support, while others will be
moving out of a mainstream setting and into a more specialised school that now seems
more appropriate developmentally for him/her.
Transition to secondary school
Transition from primary to secondary school is challenging for all students. It is likely to
be more stressful for those with an autism spectrum disorder. The continuing
challenges of autism spectrum disorders (difficulties with communication and social
skills, emotional and behavioural difficulties) combined with the added demands of
secondary school and the physical, intellectual and hormonal changes of puberty
indicate that they will require more support at this time.
As children move beyond the safety, routine and predictability of the family and primary
school, they enter a much larger and diverse secondary school community. This places
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greater demands on them both academically and socially. The stressors of higher
expectations from adults, a challenging and more diverse curriculum, more complex
peer relationships and increased responsibilities can contribute to students feeling
unsettled or overwhelmed.
Immediate concerns for the student at this time include:
•
•
•
•
•
•
•
using public transport
getting lost in a large school
having a different teacher for each subject
multiple classrooms
complex timetables
organising and completing homework
unpredictable peer group demands and interactions
Parent involvement lessens considerably at secondary school and students are
expected to take more responsibility for communication between school and home.
The impact of these changes is significant for both parents and students.
Managing the school environment and school work
Most adolescents with an ASD find school difficult at some time or other. This can be
the case no matter what the type of school; specialist or mainstream, primary or
secondary.
Why is it difficult?
Difficulties may arise for young people with ASDs because of:
•
•
•
•
•
•
•
the social interaction required with teachers and students throughout the day
and their response to these social and emotional demands
the young person’s learning and thinking style and symptoms of autism
difficulties in managing stressful situations
poor organizational skills
poor social interaction
insistence on sameness and special interests or obsessions
difficulties in both understanding and using language
All of the above contribute to making going to school and coping with school hard for
adolescents with an ASD. The adolescent at secondary school can become
increasingly emotionally vulnerable at this time when the peer group and social
interaction between students increase in complexity. The risk of being bullied or teased
or socially manipulated continues and may even escalate at this time. It is a priority to
ensure the safety of the adolescent at school. Protection from bullying and teasing is of
primary importance. Below is a typical example of what can happen to some students
with an ASD who are trying to establish new friends when they move to secondary
school.
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James (aged 13) was in Year 7 at mainstream secondary school.
In his preparation for transition to secondary school his mother and his
primary school teacher had told him that he would be leaving his friends from
primary school and would make new friends at secondary school. At his new
school he asked a small group of boys if they were his new friends and what
did he have to do to be their friend. For several weeks they exploited the
situation by demanding that he did things for them such as carry their school
bags and retrieve balls. This manipulation came to light when they told James
to go in to the shop and bring out some ice creams for them without paying.
He was apprehended by the shopkeeper.
James was stressed and perplexed by these experiences but thought that this
was what he had to do to have “new friends”
Issue
Strategies that can help
Public transport to and from
school
Backward chain (School to home first) Formal peer
support on bus
Generalise on other public transport
Multiple classrooms &
teachers
Timetable & other visual supports
Colour coding of books & folders
Staff education about autism
Identify a mentor or coach
Organising and completing
homework
Explicit task requirements
Homework diary
Homework buddy
Computer for written projects
Responsibility for
communication between
school and home.
Large student population
Communication book between home and school
Regular telephone conversations between parent &
teacher
Social skills training with visual supports (social
stories)
Bigger school grounds
Create a home base
New peer group interactions Social stories
Social group buddy
“Rules to live by” book
Exit strategies to home base
“Free time” timetable and programme
Drama activities – social role plays (for some)
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
What can we do to help students with ASDs manage?
These are some suggestions that parents and school staff can discuss as possible
strategies to put in place. Some of these strategies involve work at home as well as
school.
1. Coping with stress
You may need to teach the student to recognise the physical feelings associated with
being stressed, nervous or anxious. Checklists can be helpful to identify the signs and
situations that produce anxiety/stress as well as the symptoms in the person. These will
probably need to be used at home, school and other places.
•
Teach him/her how to remove him/herself from the stressful situation or event. This
will involve identifying a safe place or safe person to go to when stressed. Leaving
the stressful situation requires learning about where to go and who to go to, but
coping with stress also requires learning about how to face the stressful situation.
•
It will be necessary to develop a programme to help the student return to the
stressful situation and to develop ways to remain in the stressful situation more
comfortably.
•
A relaxation programme may be helpful. This may include massage (although some
young people with autism do not like to be touched), breathing exercises, or muscle
relaxation exercises (Refer to Useful websites for more information about these
techniques). For relaxation exercises to work they must be practiced daily and like
any skill, it takes time.
•
Regular physical exercise. Adolescents with an ASD might not like team sports but
may enjoy the trampoline, golf, swimming, jogging or taking the dog for a walk.
Martial arts classes may also provide an excellent form of stress management and
exercise.
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
I feel anxious and worried
when…
YES/NO
I am in a new place
I don’t know the answer to a
question
There are a lot of people around
me
I lose my things
Too many people talk to me
I don’t know what to do
I haven’t finished my school work
Add others
When I am anxious and
worried I…
Feel hot and sweaty
Feel my heart beating fast
Feel like I have to go to the toilet
Feel like hiding somewhere
Feel like my feet are cold
My hands sweat
Feel like I want to hit someone or
break something
Add others observed by you or
suggested by your teenager
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
2. Getting organized
•
Have a picture of what is needed (relevant text books, equipment), when the class
is and where the class is for each subject on the inside cover of the workbook.
•
Write lists of homework to be done and the date when each piece of work is due in
the workbook for each subject.
•
Write a homework timetable with some work allocated to each night. This may be
done at school in a “homework club” rather than at home.
•
With the help of the integration teacher or aide in the classroom:
- when class starts, write down the topic for the session, the tasks to be completed
and a timetable for the amount of time that should be spent on each task during
the class.
- Many teenagers find it hard to keep things tidy including school lockers and desks
and consequently books, timetables, equipment etc. are lost. Help will probably be
needed to tidy these and keep track of possessions from time to time or even at the
end of each week.
- Let the student know when he/she has done a good job of remembering things,
handing work in on time, arriving at class with all the appropriate equipment, books
etc.
3. Improving understanding
(i) Taking things literally:
It is best to avoid - idioms (“you’re all thumbs”); double meanings (most jokes); sarcasm
(e.g. saying “What an excellent job!” when student has arrived late).
Say what you mean and if the young person seems to react in an unexpected way,
reflect on what you just said.
Mum reported:
Adam is 13. He moved to high school this year and had trouble settling in. He was
anxious and worried about being somewhere new. We talked about him trying to
enjoy school more. Lately he has been getting into trouble and has been given
detentions for being silly and making jokes in and out of class.
I’ve been thinking about why he has been doing this. When I asked him why he was
getting into trouble he said he didn’t know because all he was doing was having fun.
I realised that the last thing I say to him every morning when I drop him off at the
school is “Have fun”. I think he’s been taking what I say literally!
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
(ii) Difficulty listening to an instruction and following it
• shorten the sentences you use
• be clear and concise
• write down instructions that have several parts
• use pictures to help explain a sequence of tasks needed for the student to carry
out the instruction successfully
• role play or guide the student through the steps of complex tasks such as
changing into sports clothes and getting to the sports assembly point on the
oval.
4. Helping with social interaction
It is imperative that all students are protected from bullying & teasing. This can be
particularly important for adolescents with an ASD who may be more vulnerable
because of their poor social skills and unusual behaviour that may invite unwanted
attention. If you suspect the student is being bullied, contact the student support group
immediately. There will also be a wider school policy for dealing with the problem.
Social interactions & rules that apply in specific situations will need to be taught and
practised. Try:
•
•
•
•
portable social rule books for handy reference for example kept in the teenager’s
pocket
when a social interaction with peers is unsuccessful, explanation that a response
was inappropriate and what the correct response would be is helpful
encourage involvement with others around common interests or activities
use of a playground buddy or mentor
5. Restricted range of interests:
•
•
•
control & manage preoccupations and obsessions rather than try to remove
them. Attempts to remove obsessions may result in the obsession being
replaced with a new obsession that is harder to contain
where possible, individualise class work around special interests
special interests can be used as an effective reward for completed work and can
also be a source of comfort to the young person with autism. Time allowed to
pursue special interests can reduce anxiety and distress. Special interests may
later lead to social contacts through special interest groups or hobby activities
David’s mum reported:
David has finally made some friends at school because he took in his
football book. He has kept the scores of all the games he has been to
for the past six years and knows a lot about football rules and players.
When the other boys who go for his team found out, they wanted to
talk to him about football and they have started to go the football on
the weekend with him. It’s fantastic for David.
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
6. Resistance to change
By now nearly all adolescents with an ASD have been at school for a number of years.
For some adolescents, resistance to change is less of a problem than in their earlier
years. The structure and predictability that is provided through the daily school
timetable usually prevents difficulties arising from resistance to change at school.
However, there will always be occasions when planned activities and the predicted
timetables are altered. If possible, advance warning about change will help, e.g. if a
staff member is going to be away from school or a special event is taking place.
In general it is helpful if the school can do the following:
• provide a predictable environment
• offer a consistent daily routine
• communicate expected change in the communication book between home and
school
7. Poor concentration
Poor concentration skills and inattention are frequently reported by both parents and
teachers of adolescents with an ASD. These can be problematic at school because of
the effects on the student’s ability to attend to instruction, listen to the teacher in the
classroom and focus on the work at hand.
• provide a quiet environment with few distractions, monitor noise level in the
classroom, provide a clear uncluttered working space
• break down work into small steps
• check that instructions have been understood, write them down if necessary
• give frequent feedback
• monitor attention and redirect if it wanders
• reward attention to task and the effort made
• try the use of sound reducing headphones
• if this is a major problem, the use of medication following the advice of your
paediatrician or child psychiatrist might help
Talking and working together - teachers and parents
By the time their children have reached the end of the primary school years, parents
will have a history of advocating for their son/daughter and probably had many and
differing experiences of talking to teachers and other professionals involved with their
child’s education. Some of these experiences will have been positive but there may
also have been instances when the interaction or outcome has not been what parents
had hoped for.
Ideally, parents and teachers should be equal partners in the process of developing
educational goals. A collaborative home-school partnership should lead to better
understanding of the adolescent’s abilities at home and school; foster a team approach
to programme planning and educational goals and establish effective communication
processes between home and school.
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
A collaborative relationship between teachers and parents is based on an
understanding that:
•
Family members are usually the most stable, influential, and valuable people in
the lives of adolescents with autism.
•
Parents can provide the teacher with information about how autism affects their
child, their profile of strengths and weaknesses and information on the
effectiveness of strategies and programming ideas based on experience of
previous events.
•
Adolescents with autism have difficulties in their ability to generalize behaviours
and skills across time, people and settings. Therefore, effective intervention is
based on strategies employed across all environments.
•
Teachers have expertise in classroom management, teaching strategies and
programme design but they also need specific information about the student that
only parents can give.
•
Parents also need to know the programme options, including integration or
additional assistance for student support, at the school and the educational
decision making protocol for the school.
One of the key principles outlined in the ‘Better Services, Better Outcomes’ document
produced by the Victorian Education Department is that “Parents are partners in the
educational process and play an important role in setting learning priorities for their
children” (DEET, 2001).
Part of this partnership involves the Student Support Group meetings (SSGs). These
meetings are available even for those students who are not eligible for funding for the
Program for Students with Disability & Impairments. SSGs should be held regularly and
may include parents, an advocate, principal, teacher, teacher aide, therapists and the
student.
The Student Support Group process includes:
•
•
•
•
•
•
•
Understanding the student
Identifying strengths & weaknesses, likes & dislikes
Understanding the student’s limitations
Discussing positive aspects of the student’s leaning and identifying issues for
discussion
Setting realistic goals
Programme planning
Programme evaluation
It is a good idea to have a regular SSG meeting planned. Even if the student does not
have integration support at school, he/she is probably encountering some difficulty at
school from time to time. These difficulties can be discussed at the SSG meeting. Many
parents comment that a SSG meeting is only called if there are problems. By having a
regular meeting date, it is easier to deal with parental and staff concerns without having
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
to call a special or crisis meeting. Regular meetings with all staff involved should help
the communication process between home and school.
It is helpful if at the start of each school year you can identify the type and how much
communication parents would like to have with school staff. There may be a decision to
have one SSG meeting per term with the opportunity to call a special meeting if
necessary. Other communication methods may include daily or weekly communication
books between home and specific teachers at the school. Some teachers may agree to
a weekly telephone call or email to parents. It is best to arrange this contact early rather
than in response to “an incident” or problem.
Tips for teachers and parents:
•
•
•
•
•
•
•
•
•
•
Parents usually know their child best
Parents have the most interest in their child
They are the constant in their child’s life – professionals come and go
Help parents to get to know the key staff teaching their child each year
Help parents to see that school staff working with the student care too
Parents and school staff need to be diplomatic but proactive in communications
Plan meetings and be prepared to change meeting dates if something is not
working rather than wait for the scheduled meeting date
Take notes with you to meetings to keep yourself on track – parents and school
staff
Work together as a team – there will be times when parents have the solution
the teacher is looking for and vice versa
Listen to each other
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
Remember - Adolescents with ASDs are just kids too…… This is what a young
adult wrote about his teenage brother who has high functioning autism
RUSS
Okay, let me describe to you a situation that occurs frequently in my household. I lie on my bed, talking
trivial yet highly enjoyable drivel into the end of a telephone to my girlfriend. She is stressed, and I, being
the sensitive, caring boyfriend I try to be, am trying to comfort her. The door of my room bursts open,
and my brother steps through. “Brendan” he says in an urgent semi-whisper. Frustration arises in me as
I calmly ask my girlfriend to hold on and put my hand over the phone. “What” I hiss through clenched
teeth, directing a fierce stare straight at him. There’s no way he can’t tell I’m pissed off, and yet this does
not seem to faze him. “Eminem is coming to Melbourne. I just saw an ad on TV, and he’s comin’ on the
26th.”
I look at him blankly for a moment:
“That’s all you came to tell me?”
“Yeah I just thought I’d…”
“Get out of my room”
This does not seem to faze him either. As he closes the door, I see the look on his face, a big grin as he
converts from the external world to the internal. His thoughts consume him. He probably has forgotten
already that he ever interrupted me.
This is the world of my teenage brother. It would be an interesting experience, I think, to be my brother.
He is forever retreating into his little world, and I have come up with three reasons why. First, escape –
especially during an argument with me, when you can see him retreat and start going through his mind
what he should have said to me but didn’t. Secondly, amusement – when he’s bored, there is no
stopping him. And there is the third reason, when he gets excited, it’s virtually impossible to get his
attention. I’ve come to recognise the physical changes that take place as his internal thoughts take over;
the growing smile, the unfocused eyes. If he’s re-enacting a scene in his head, he’ll make puppets out of
his hands and turn them into characters in a scene, holding them in front of his face, mouthing words and
sentences. He sometimes does laps of a room, of even the whole house. It’s as if another person is
waiting to burst out of him.
His thoughts aren’t weird or crazy. When he tells me his thoughts, they are imaginative, creative and,
most often, highly amusing. He’s a bright, happy kid. Nothing is strange about the way he thinks. He is
very naïve about certain topics that he doesn’t understand, which makes some of the things he talks
about a bit weird. But other than that, he’s fine. It’s only that he’s continuously shifting from the outer to
the inner world. For a regular person, it is said that we daydream every ninety minutes or so. My
brother, I have observed, can daydream, for short periods, several times every five minutes.
Russell’s condition doesn’t bother me. Heck, I’ve grown up with him. I’m so used to it that I look at the
way other brothers and sisters communicate, and wonder what it would be like to communicate with
someone on the same wavelength. Sure, we act like normal brothers do – forever arguing, fighting over
ownership, complaining to Mum about something the other sibling has done. For example, a pet peeve
of mine is when I wake up and look forward to the idea of toast for breakfast, only to find that Russ, who
has a love of bread, has used up the last of it. This is a normal brotherly thing. But when it comes to
conversation, it’s a different matter. I have to continually find simpler, easier, or just better ways to get
Russell to understand something. Once he’s got it, though, he’s fine. He has an unbelievable memory.
It’s just a matter of storing the information in there in a way that makes sense.
But like I said, none of this bothers me. But I do worry about my brother. People who know him, who
know how he is and what he’s like, always complain when I try to stop Russell from doing the little things
that he does, like talking to himself, which he can’t really help. They seem to think that I don’t accept the
way he is, and am trying to stop him for that reason. But that’s not it at all. It’s just that, on more than
one occasion, I have witnessed the stares, the laughs and the sideways glances that he gets because of
those little things. And I don’t like the way those people can’t see that he is a normal kid. Well, that he is
to me. I want them to look at him the way they would anyone else. He’s my brother, and he has autism.
People who have it bad are almost completely locked in their internal mind, and hardly communicate at
all. So I’m glad he’s only got a little bit of it. He’s my brother and he’s a little different. But I can’t imagine
life without him.
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
SECTION TWO
DEVELOPING THE STUDENT PROFILE
TEMPLATES
CHECKLISTS
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
2.1 Developing the student profile
The student profile is a summary of what the transition team knows about the student. It
should contain current information and records from the past including previous assessments
and pertinent school records.
Information about priority learning needs, the student’s mental health and well-being,
temperament, learning style, communicative abilities and social skills should be gathered
before decisions are made about the appropriate educational programming and the Individual
Learning Plan (ILP) is written. Each student with an ASD will have a unique profile of abilities
and learning problems.
The process for developing the student profile involves:
• gathering the information,
• sharing the information with the transition team members and
• creating the student profile that summarises all the information gathered to date and
what is known about the student.
Gathering student information
Sections One and Two of this kit have given general information about the core features of
Autism Spectrum Disorders and how these affect the young adolescent’s thinking, learning,
communication, ability to interact socially with others and their emotions and behaviour. It is
important that teachers have information about the specific profile of abilities of each student
with an ASD, what management, teaching strategies and supports are already in place and
what is working well. A student profile is not complete without specific information about the
following:
1. How ASD symptoms affect the student and how they are currently being managed
2. How ASD symptoms affect the student’s thinking
3. The student’s learning style & consideration of the impact of core processing
problems.
4. How well the student is able to communicate with others.
5. The student’s emotional and behavioural profile.
6. How well the student is able to interact socially with others.
7. How well the student can express emotions.
8. What the student is thinking about the new school, including any worries they may
have.
Gather this information through discussion with parents/carers, the student and the teachers
at the current school. The following eight templates have been written to assist with the
gathering of this important information.
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
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2.2 Student Profile
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
Student Personal Details
STUDENT NAME: ………………………………………………..…
Family Name...............................................................................................
Given Name ......................................
Date of Birth........................
Home Address ............................................................................................
..........................................................
Postcode.............................
___________________________________________________________
Family Details
Father’s Name ............................................................................................
Occupation..................................................................................................
Address.............................................
Postcode.............................
Telephone ...................................................................................................
____________________________________________________________ _
Mother’s Name............................................................................................
Occupation..................................................................................................
Address.............................................
Postcode.............................
Telephone ...................................................................................................
__________________________________________________________
Siblings
Name ..................................DOB ..................... School ............................
Name ..................................DOB ..................... School ............................
Name ..................................DOB ..................... School ............................
__________________________________________________________
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
Primary School Currently Attended:
............................................................................................................................
Contact:...............................................................................................................
Telephone: ..........................................................................................................
Previous Education Settings
Kindergarten ...............................................................................................
Child Care (Private or Community) .............................................................
Family Day Care .........................................................................................
Other ...........................................................................................................
___________________________________________________________
Agencies involved
Government ......................................Contact Person.................................
..........................................................Contact Person.................................
Community........................................Contact Person.................................
..........................................................Contact Person.................................
Health ...............................................Contact Person.................................
____________________________________________________________
** Person to Coordinate Transition
....................................................................................................................
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
Summary of diagnostic and assessment information
Diagnosis………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
Diagnosed by…………………………………………………………………………………………..
Date of diagnosis………………………………………………………………………………………
Cognitive assessment
Date of Assessment…………………………………………………………………………………….
Results……………………………………………………………………………………………………
……………………………………………………………………………………………………………
Communication Assessment
Date of Assessment…………………………………………………………………………………….
Results……………………………………………………………………………………………………
……………………………………………………………………………………………………………
Adaptive skill development
(Fine and gross motor skills, self-help, recreation skills)
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
…………………………………………………………………………………………………………….
OTHER
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
…………………………………………………………………………………………………………….
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
TASK ONE: Autism/Asperger’s Disorder Symptoms
1. Talk with the student’s parents and current teachers at primary school.
2. Together, make a list of the student’s Autism/Asperger’s Disorder symptoms in
each area.
Autism symptoms
Current symptoms
Social
……………………………………………………………………...
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
Communication
……………………………………………………………………...
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
Routines, rituals,
obsessions and
managing change
……………………………………………………………………...
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
………………………………………………………………………
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
•
Are any of these causing particular concerns at present? How are they being
managed? At school? At home?
School
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
Home
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
__________________________________________________________________________________
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TASK TWO: HOW DO ASD SYMPTOMS AFFECT THE
STUDENT’S THINKING?
Discuss with the parents and current teacher
1. How does ASD affect the way he/she is thinking?
2. How are they currently dealing with this or responding?
Thinking style of the student
Parental /teacher responses &
management
Rigid thinking
Difficulty accepting exceptions
Poor understanding of irony,
metaphor, sarcasm
Difficulty understanding time
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Autism Spectrum Disorders: Transition to Secondary School © A Brereton, 2008
Difficulty sequencing
/organising
Obsessive and compulsive
thinking
Maintaining and shifting
attention
Problems generalizing
Focus on details/visual attention
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TASK THREE: LEARNING STYLE
Discuss with the parents and current teacher
Assess the student’s learning style & consider the impact of core processing problems by
asking:
1. What are the strengths, weaknesses & emerging skills
Strengths
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
Weaknesses
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
Emerging Skills
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
2. Any particular areas of interest or talent?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
3. Does the student understand cause and effect relationships?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
4. Is the student easily distracted? List
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
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5. Does the student recognise when a task is finished?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
6. What does the student remember easily? What’s difficult to remember?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
7. How does the student like to know what’s coming next?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
8. Does the student adapt to new situations easily?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
9. How does the student respond to being wrong / corrected?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
10. What does the student do when confused or anxious?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
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TASK FOUR: SOCIAL SKILLS
Talk with the student’s parents and current teachers.
Together, complete this social skills questionnaire to gather information about how
well the student is able to communicate socially with others.
Does he/she…..
1
2
3
4
5
Never
Rarely
Sometimes
Often
Always
Take turns in games
Share
Join in with others’ activities
Ask others to join in with him/her
Offer help
Compromise
Deal with winning
Deal with losing
Finish a game or activity
‘Tell on’ others
Touch familiar and unfamiliar people
appropriately
Deal with peer pressure
Seek attention
Request permission
Receive or give a compliment
Accept criticism
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What does the adolescent
do/say?
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TASK FIVE: COMMUNICATION
Talk with the student’s parents and current teachers at primary school.
Ask parents and the current teacher to complete this brief communication checklist.
Use this to discuss the student’s current language abilities.
Can he/she….
YES/NO
What does he/she do/say?
Maintain appropriate
distance from others
Use non-verbal
communication (eye
contact, gestures…)
Respond to others’ nonverbal communication
Use appropriate tone of
voice
Greet familiar &
unfamiliar people
Introduce him/herself
Initiate a conversation
Join a conversation
Maintain a conversation
(questions & comments)
End a conversation
appropriately
Change topic/stay on
topic
Interrupt others
appropriately
Ask for help
Request information
(peers & adults)
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TASK SIX: EMOTIONAL & BEHAVIOURAL PROFILE
Talk with the student’s parents and current teachers at primary school.
Ask parents and the current teacher to complete a Developmental Behaviour
Checklist. (You will have seen an example of this in the training workshop). Use this
to discuss the student’s current emotional and behavioural profile.
Attach the record form and score details here.
Comments:
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
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……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
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TASK SEVEN: EXPRESSION OF EMOTIONS
Talk with the student’s parents and current teachers.
Ask parents and the current teacher to complete the communicative function
questionnaire about emotions. The purpose is to find out whether he/she can express
emotions in a range of ways.
How does the student….
What does she/he do or say?
Deal with making a mistake
Try something new
Assert him/herself
Accept ‘no’
Deal with teasing/bullying
Request affection
Express feelings of:
Happiness
Sadness
Anger
Fear
Confusion
Worries/concerns
Frustration
Humour
Excitement
Disappointment
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TASK EIGHT: HOW IS THE STUDENT FEELING ABOUT GOING
TO SECONDARY SCHOOL?
Talk to the student before the transition to secondary school.
The questions listed below may give you a starting point.
What do you like about school?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
How have the teachers at school helped you with school work?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
How are you getting on with other children? Any friends?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
Have you visited your new school? What did you do there?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
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Have you met any of the teachers at secondary school? Have you been into the classrooms?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
What are the things that have helped you to enjoy primary school?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
Is there anything worrying you about going to your new school?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
Can you think of anything that would help you to settle in at your new school?
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
……………………………………………………………………………………………………………
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TRAINING NEEDS AND SUPPORTS FOR STAFF
Training needs identified:
1…………………………………………………………………………………………
2…………………………………………………………………………………………
3…………………………………………………………………………………………
4…………………………………………………………………………………………
5…………………………………………………………………………………………
Student Services/Consultants who may be required
Contact details
Organisation
Psychologist
Speech
Pathologist
Occupational
Therapist
Social Worker
Visiting Teacher
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TRANSITION CHECKLIST FOR SCHOOL
STAFF
YES
Transition plan and timeline developed
Teacher attends SSG meeting at primary
school
Home Group teacher/Year Coordinator
identified
Professional learning for Home Group
teacher/Year Coordinator
Professional learning for all staff
Home Group Teacher/Year Coordinator
familiar with all reports
Contact with family
Transition plan developed
School familiarisation for student
EG: Map of the school
Video of the school and routines
Tour of the school
Plan implemented
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INFORMATION GATHERING CHECKLIST
AREA
WHO
ASD CHARACTERISTICS, BEHAVIOUR & SKILLS
Social
Communication
Routines, rituals
Developmental Behaviour
Checklist
Cognition/thinking
Learning style
Communication checklist
Social communication
checklist
Emotions checklist
Student interview
OTHER (FORMAL ASSESSMENTS)
Hearing
Vision
Medical
IQ
Speech and Language
OTHER
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DONE
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SECTION THREE
GLOSSARY OF TERMS
REFERENCES
RESOURCES
APPENDIX 1 SEXUALITY ISSUES
APPENDIX 2 DBC INFORMATION
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GLOSSARY OF TERMS
Asperger's Disorder (sometimes referred to as Asperger’s Syndrome)
A developmental disorder defined by impairments in social interaction and communication,
along with restricted repetitive and stereotyped patterns of behaviour, interests and activities.
Children with Asperger’s Disorder do not have any significant delays in language
development and do not have Intellectual Disability.
Attention-Deficit/Hyperactivity Disorder (ADHD)
A syndrome with core symptoms including difficulty maintaining attention, cognitive
disorganization, distractibility, impulsivity and hyperactivity. These symptoms may vary
between children and across different situations and times. Common secondary symptoms
include perceptual and emotional immaturity, poor social skills, disruptive behaviours and
academic problems. There are three subtypes identified in DSM-IV: ADHD, Combined Type
(where both inattention and hyperactivity-impulsivity are significant features), ADHD,
Predominantly Inattentive Type (where the main feature is inattentiveness) and ADHD
Predominantly Hyperactive-Impulsive Type (where the main feature is hyperactivity).
Atypical Autism
A category that is part of the diagnostic category PDD-NOS (see below). A general term for
conditions that are close to but do not meet the full diagnostic criteria for autism, because of
factors such as late age of onset or atypical symptomatology.
Auditory Integration Training (AIT)
An intervention designed to reduce auditory sensitivity and distortions, and to improve the
quality of auditory processing. Proponents of AIT report that it encourages the ears to work
together in a coordinated manner and can improve the ability to comprehend what is being
said or read; to follow directions; or to express thoughts and feelings in words. This has not
yet been supported by clinical trials.
Augmentative and Alternative Communication (AAC)
The use of visual aids (objects, photos, pictures etc.) or unaided systems (hand signs or
gestures) to help children with language difficulties communicate more effectively. (See
Makaton for an example of augmentative communication)
Autism
A syndrome consisting of a set of developmental and behavioural features. The core
features of autism include impairments in three main areas of functioning: social interaction,
communication and restricted, repetitive and stereotyped patterns of behaviour, interests and
activities. Autism affects the person throughout life.
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Autism Diagnostic Interview-Revised (ADI-R)
A standardised parent interview schedule for the diagnosis of autism (as defined by DSM-IV
criteria) developed by the Medical Research Council in London, England. It assesses four
main areas; communication, reciprocal social interaction, play and developmental history. It
can be used to assess children and adults with a developmental age of 18 months and over.
Autism Diagnostic Observation Schedule-Generic (ADOS-G)
A standardized, direct-observation measure for examining communicative and reciprocal
social interaction behaviours that are associated with autism. Its administration involves a
semi-structured play session. It takes approximately one hour to complete.
Autistic Savant
A person with autism who shows an extraordinary talent or aptitude for one or two particular
skills (e.g. musical or artistic ability).
Autistic Spectrum Disorders (ASDs)
This is a term with no formal definition or universally accepted usage. It is used to refer to
many different things throughout the world, although it is now most commonly used in a
similar way to the term Pervasive Developmental Disorders (PDDs) and includes, Autistic
Disorder, Asperger’s Disorder and PDD-NOS.
Childhood Autism Rating Scale (CARS)
A widely used, but subjective, rating scale for behaviours associated with autism. Scores on
the scale are based on direct observation by the examiner. The child is rated in 15 areas.
The scores reflect the categories of non-autistic, mildly-moderately autistic or severely
autistic, however it is NOT a diagnostic tool. The CARS is a requirement of the Department
of Education in Victoria to ascertain severity of autism. There is a cut off score of 30 that
indicates whether or not the child is in the autistic range.
Childhood Disintegrative Disorder
A syndrome with the core feature of a marked regression in multiple areas of functioning after
a period of 2 years of apparently normal development. Other symptoms include difficulties
with social interaction, communication and restricted, repetitive and stereotyped patterns of
behaviour, interests and activities
Chromosomes
Structures in the nucleus of the body’s cells that bear an individual's genetic information.
Co-morbid Condition
Having more than one concurrent diagnosis. Another term for this would be "dual
diagnosis". Many people with autism have one or more additional diagnoses, such as ADHD,
Tourette's Syndrome or Epilepsy.
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COMPIC
A set of pictographs (computer drawn line drawings) developed in Australia as a
communication resource for people with language difficulties. COMPIC has 1670
pictographs which represent words, objects, activities and concepts. The pictographs are
accompanied by the relevant word or phrase. The pictographs provide a visual
representation of a word or concept for use in augmentative communication programs. Other
pictograph systems are also frequently used in Victoria, e.g. Picture Communication Symbols
(PCS) and Boardmaker.
Deoxyribonucleic Acid (DNA)
The substance contained within chromosomes which encodes an individual's genetic
information.
Developmental Behaviour Checklist (DBC)
An instrument that assesses a broad range of behavioural and emotional disturbances in
young people (aged between 4 and 18 years) with an intellectual disability. There are parent
(primary carer) and teacher report versions of the DBC. The DBC has five sub-scales:
Disruptive/Anti-social Behaviour, Self-absorbed, Communication Disturbance, Anxiety and
Social Relating. (Einfeld & Tonge, 2003. Available from Centre for Developmental Psychiatry
& Psychology, Monash University. Contact [email protected]).
Diagnostic and Statistical Manual (the most recent version is DSM-IV-TR)
The official system for classification of psychological and psychiatric disorders produced by
the American Psychiatric Association. DSM is the diagnostic system that is most commonly
used in Australia.
Echolalia
The repetition of words or phrases spoken by another person. The echoing may occur
immediately after hearing the word or phrase. This is immediate echolalia. Delayed
echolalia can occur days or weeks after having heard the word or phrase.
Electroencephalogram (EEG)
A procedure used to record electrical brain activity by placing electrodes on the scalp. It is
often used to diagnose seizure disorders or to look for abnormal brain wave patterns.
Epilepsy
A brain disorder in which clusters of nerve cells, or neurons, in the brain sometimes signal
abnormally. In epilepsy, the normal pattern of neuronal activity becomes disturbed, causing
strange sensations, emotions, and behaviour or sometimes convulsions, muscle spasms,
and loss of consciousness. Having a seizure does not necessarily mean that a person has
epilepsy. A diagnosis of epilepsy needs to be confirmed using an EEG or brain scan.
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Expressive Language
The use of spoken language.
Fragile X Syndrome
A genetic disorder which can cause cognitive impairment and a number of other a number of
physical and behavioural characteristics. Some of these behaviours, such as poor eye
contact, hand flapping, and poor social skills, also occur in children with autism. While most
children with Fragile X Syndrome do not have all the characteristics of autism, about 15% to
33% are diagnosed as autistic. Individuals can be tested for "Fragile X" by having a blood
test and having their chromosomes (see above) examined by a geneticist.
Gene
Genes are responsible for the inherited characteristics that distinguish one individual from
another. They are made of DNA. Each chromosome carries many genes. Each human has
approximately 100,000 genes.
High Functioning Autism
Individuals with autism who are not cognitively impaired (i.e. have an average or higher IQ,
>70) are referred to as 'high functioning'.
Hyperlexia
A precocious ability to read words, far above what would be expected for their chronological
age. A hyperlexic child may not understand what they are reading and may even have
significant difficulty in understanding verbal language.
Hypotonia
Low muscle tone.
Intellectual Disability (ID)
In Victoria, three main factors are used to define an intellectual disability. The first is a
significantly below average intelligence (that is, an IQ of 70 or less where the IQ score is
obtained from a standardised intelligence test). The second is difficulties with everyday life
skills (such as the ability to dress or bath without help or express thoughts clearly. Tests of
adaptive behaviour may be used to measure these skills. The third is that both the above
factors must be present before the individual turns 18 years of age. More than three-quarters
of people with an intellectual disability have a mild intellectual disability. The remainder have
either a moderate, severe or profound intellectual disabilities.
Intelligence
A broad concept made up of a large number of widely different yet specific skills. Its
measurement through the use of intelligence tests attempts to assess these skills in order to
provide a global score representative of an individual’s level of functioning. Scores on
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intelligence tests relate a child’s performance on the test to that of other children of the same
chronological age.
Intelligence Quotient (IQ)
A standard score derived from intelligence tests. It represents the intellectual age of the child
(that is the age at which the average child would perform at a given standard) divided by the
child’s chronological age at the time of testing. The scores are organised such that 100 is an
average score (i.e. when the intellectual age and chronological age are the same) but any
score between 90 and 110 is considered average.
Landau-Kleffner Syndrome
A rare form of childhood epilepsy which results in severe language disorder. It is
characterised by a progressive loss of the ability to understand language and use speech,
following a period of normal speech development. It is usually diagnosed using an EEG
taken while asleep. The cause of the condition is unknown.
Macrocephaly
A condition where the head circumference is two standard deviations above average (i.e.
greater than the 97th percentile).
Magnetic Resonance Imaging (MRI)
A diagnostic procedure that uses the magnetic qualities of chemicals in the body to produce
an image of the brain.
Makaton
A communication system using simple hand signs. It is commonly used with children and
adults with complex communication needs. It can be used in conjunction with other
communication programs, such as PECS.
Microcephaly
A condition where the head circumference is two standard deviations below average,
producing an abnormally small head, and a congenitally small brain.
Neuroleptics
A group of drugs referred to as anti-psychotics or major tranquillisers (although not all
neuroleptics have a tranquillising effect). There are two broad types: typical and atypical.
Typical neuroleptics are older and have a greater impact on positive psychotic systems
(hallucinations, delusions and thought disorder etc) while atypical neuroleptics are newer and
more likely to have an impact on both positive and negative (lack of motivation and flat mood)
psychotic symptoms. There is some evidence that they are of use in people with
developmental disorders to reduce hyperactivity, aggressiveness, distractibility, temper
tantrums and stereotypes.
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Neurologist
A doctor specialising in medical problems associated with the nervous system, specifically
the brain and spinal cord.
Neurotypical
A term used for neurologically and cognitively normal individuals.
Obsessive-Compulsive Disorder (OCD)
A disorder characterised by obsessions (recurrent persistent thoughts, impulses or images)
and/or compulsions (repetitive behaviours such as checking or mental acts such as praying,
or counting). The obsessions are distressing to the individual and often the aim of the
compulsion is to reduce this distress. For example, if the obsession is fear of germs, a
person may frequently wash their hands.
Pervasive Developmental Disorders (PDDs)
A term that encompasses autism and related disorders. It specifically refers to the following
five disorders listed in the DSM-IV: Autistic Disorder, Asperger's Disorder, Pervasive
Developmental Disorder - Not Otherwise Specified, Childhood Disintegrative Disorder, and
Retts Disorder.
Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS)
A diagnostic category that is used when there is a severe and pervasive impairment in the
developmental of reciprocal social interaction or verbal and non-verbal communication skills
or when stereotyped behaviours, interests and activities are present, but the criteria are not
met for a specific Pervasive Developmental Disorder.
Picture Exchange Communication System (PECS)
An augmentative communication system. PECS teaches people with language difficulties to
exchange a picture of a desired item with a teacher/parent, who immediately honours the
request. Allows people with language difficulties to initiate communication.
Positron Emission Tomography (PET) Scan
A procedure that uses low-dose radioactive sugar to measure brain activity.
Pragmatics
The social use of language (for example, knowing what to say, how to say it and when to say
it).
Proprioception
The ability to sense the position, location, orientation and movement of the body and its
parts.
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Psychoeducational Profile – Revised (PEP-R)
A standardised observational assessment instrument based on a developmental approach.
The PEP-R was specifically designed for use with non-verbal or language delayed children.
The developmental framework of the PEP-R provides a way to describe and understand the
characteristic uneven learning patterns exhibited by children with autism or related
developmental disorders. It provides both standard scores and age equivalencies.
Psychiatrist
A psychiatrist is a qualified medical doctor who has obtained additional qualifications to
become a specialist in the diagnosis, treatment and prevention of mental illness and
emotional and behavioural problems. A psychiatrist is qualified to prescribe medication
because they have completed medical training.
Psychologist
A professional who is an expert in understanding human behaviour. Some psychologists
specialise in treating mental illness, while others help mentally healthy people find ways of
functioning better, for example, helping people to handle stress and family problems.
Psychological therapies are also widely used by groups and organisations. Psychologists
are not medical practitioners and cannot prescribe medication. Their treatments are based
on changing behaviour without medication.
Psychopathology
Clinically significant emotional and behavioural problems.
Receptive Language
The understanding of language.
Rett’s Disorder
A disintegrative disorder where after a period of normal development, between the ages of 5
and 48 months, head growth decelerates and there is a loss of previously acquired skills.
Other symptoms include stereotyped hand movements, uncoordinated movement and
language difficulties. Only reported in females.
Selective Serotonin Reuptake Inhibitors (SSRIs)
A class of drugs used as antidepressants. They increase the levels of serotonin in the body.
These drugs should only be taken as advised by a medical practitioner/psychiatrist as they
can have some side-effects and can be dangerous if mixed with other medications. Some
examples of SSRIs are Prozac and Zoloft.
Self-stimulation
A term for behaviours whose sole purpose appears to be to stimulate ones senses. Many
people with autism report that some self-stimulation serves a regulatory function for them (ie.
calming, increasing concentration, or shutting out an overwhelming sound).
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Sensory Integration (SI)
The ability to take in information through senses (touch, movement, smell, taste, vision,
digestion and hearing), put it together with prior information, memories, and knowledge
stored in the brain and make a meaningful response.
Serotonin
A neurotransmitter. In conjunction with other neurotransmitters, it is believed to be key in the
control of mood and emotional behaviour. Also implicated in the behavioural- physiological
processes of sleep, pain and sensory perception, motor function, appetite, learning and
memory.
Special Developmental School (SDS)
An educational setting from pre-school to high school for children with IQ of less than 55.
Special School
An educational setting for children and adolescents with IQ’s between 55 and 70.
T.E.A.C.C.H. (Treatment and Education of Autistic and Related
Communication Handicapped Children)
A therapeutic approach broadly based on the idea that individuals with autism more
effectively use and understand visual cues. It focuses on promoting independence by using
items such as picture schedules to break down tasks step-by-step, enabling individuals to
better comprehend and perform tasks independently.
Theory of Mind
The ability to understand that other people have beliefs, desires and intentions that are
different from one's own.
Tourette's Syndrome
An inherited, neurological disorder characterised by repeated and involuntary body
movements (tics) and uncontrollable vocal sounds. Involuntary symptoms can include eye
blinking, repeated throat clearing or sniffing, arm thrusting, kicking movements, shoulder
shrugging or jumping. In a minority of cases, the vocalisations include socially inappropriate
words and phrases - called coprolalia. These outbursts are neither intentional nor
purposeful. Onset occurs before the age of 18. The condition occurs in all ethnic groups
with males affected 3 to 4 times more often than females.
Tuberous Sclerosis
A complex genetic disorder affecting individuals with different degrees of severity. It derives
its name from the tuber-like growths on the brain which calcify with age and become hard or
'sclerotic'. Abnormal TS growths can affect almost any other organ of the body (including the
skin, eyes, heart, kidneys and lungs) but they rarely cause problems. Common symptoms
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include skin problems (white patches on skin or rash), developmental delay, epilepsy and
hyperactivity. It occurs in 1 in 8000 births.
Vineland Adaptive Behavioural Scales (VABS)
A scale designed to assess handicapped and non-handicapped persons from birth to
adulthood in their personal and social functioning. The VABS is organised around four
Behaviour Domains: Communication, Daily Living Skills, Socialisation, and Motor Skills
Wechsler Intelligence Scale for Children (WISC-III, also the WISC-IV has
been recently released)
An individually administered clinical instrument for assessing the intellectual functioning of
children aged 6 to 16 years 11 months. The individual's performance on various sub-tests is
summarised in to three main components – Verbal IQ, Performance (non-verbal) IQ and an
overall IQ score.
Wechsler Preschool and Primary Scale of Intelligence – Third Edition
(WPPSI-III)
A clinical instrument designed to assess IQ which is similar to the WISC-III but for children
ages 2 years 6 months to 7 years 3 months.
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RESOURCES
AUTISM SPECTRUM DISORDERS – AUSTRALIA
AUTISM VICTORIA
http://www.autismvictoria.org.au/home/
Autism Victoria is a member-based not for profit organization and describes itself as “the
peak body for Autism Spectrum Disorders in the state of Victoria”. Its stated aim is to
“improve the quality of life for people affected by Autism Spectrum Disorders, their family and
carers”. Autism Vic also provides a range of services to individuals and agencies with an
interest in Autism Spectrum Disorders, including Asperger’s Syndrome and PDD-NOS.
ACT-NOW
http://www.med.monash.edu.au/spppm/research/devpsych/actnow/
The Autism Secondary Consultation and Training Strategy is a Monash University project,
funded by the Department of Human Services (Victoria). The factsheets are particularly
useful.
AUTISMHELP.INFO
http://www.autismhelp.info/
This site is an initiative of Gateways Support Services Inc. funded by the Department of
Human Services Victoria Barwon-South Western Region. The site was designed to be easy
to use, practical and informative. Sections on the site contain practical strategies and
resources tailored to the needs of professionals working with children and adults who have
autistic spectrum disorder.
BETTER HEALTH CHANNEL
http://www.betterhealth.vic.gov.au
A site with concise information about Autism; provided by the Department of Human
Services, State Government of Victoria.
HEALTHINSITE - AUTISM
http://www.healthinsite.gov.au/topics/Autism
A list of resources and articles on autism spectrum disorders, including Asperger's syndrome;
the site is an initiative of the Australian Government.
Autism Spectrum Australia (Aspect)
www.aspect.org.au
Autism Association of Queensland
www.autismqld.com.au
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Autism Association of Western Australia
www.autism.org.au
Autism Association of South Australia
www.autismsa.org.au
Autism Tasmania
www.autismtas.org.au
Autism Association of the Australian Capital Territory
autism.anu.edu.au
Autism Northern Territory
www.autismnt.com.au
AUTISM SPECTRUM DISORDERS - INTERNATIONAL
AUTISM SOCIETY OF AMERICA
http://www.autism-society.org/
A comprehensive site providing information about Autism and research into Pervasive
Developmental Disorders.
The mission of the Autism Society of America is to “promote lifelong access and opportunity
for all individuals within the autism spectrum, and their families, to be fully participating,
included members of their community”. Education, advocacy at state and federal levels,
active public awareness and the promotion of research form the cornerstones of ASA's
efforts to carry forth its mission.
NATIONAL AUTISTIC SOCIETY
http://www.nas.org.uk/
The National Autistic Society (U.K.) exists to champion the rights and interests of all people
with autism and to ensure that they and their families receive quality services appropriate to
their needs. This site includes information about autism and Asperger syndrome, and about
support and services available in the UK.
AUTISM CONNECT
http://www.autismconnect.org/
Autismconnect is a non-commercial web site, providing news, events, world maps, and rapid
access to other web sites with information on autism.
NINDS - AUTISM
http://www.ninds.nih.gov/disorders/autism/autism.htm
The website of the National Institute of Neurological Disorders and Stroke (U.S.A.); provides
information about Autism and links to current research in the field.
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NATIONAL ALLIANCE FOR AUTISM RESEARCH
http://www.naar.org/
A Princeton University based site with a large amount of information about Autism and useful
links to current research.
The mission of the National Alliance for Autism Research is to “fund, promote and accelerate
biomedical research and science-based approaches that seek to determine the causes,
prevention, effective treatments and, ultimately, a cure for autism spectrum disorders. This
mission includes providing grants to researchers for innovative, new pilot studies; mentoring
fellowships to recruit new researchers to focus on autism; and funding larger, collaborative
research programs that have the potential to yield major scientific advances in autism
research”.
EDUCATION AND SCHOOLS
Department of Education & Early Childhood Development
http://www.education.vic.gov.au/
Catholic Education Office
http://www.ceo.melb.catholic.edu.au/
Independent Schools Association
http://www.ais.vic.edu.au/
COMMUNICATION
Board maker
http://www.mayer-johnson.com/
Do2Learn: aides & Resources
http://www.do2learn.com
Communication Resource Centre
http://www.scopevic.org.au/therapy_crc.html
COMTEC: specialised equipment& technology
www.yooralla.com.au
SOCIAL SKILLS
The Gray Centre (Social Stories)
http://www.thegraycenter.org/
Social stories
http://www.polyxo.com/socialstories/introduction.html
O.A.S.I.S.
http://www.udel.edu/bkirby/asperger/social.html
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OTHER:
Sex education information for students with disabilities
http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=296&a=6001
National Autistic Society information page
http://ericec.org/faq/sex-ed.html
Has useful references for further reading on the subject
http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Sex_education_for_children_
with_intellectual_disabilities?OpenDocument
Victorian Govt. information page
http://www.bbc.co.uk/science/humanbody/body/interactives/lifecycle/teenagers/
An interactive website about the body with a specific section on puberty and how the body
changes from childhood to adulthood.
General reference books
http://www.autism-resources.com/nonfictiontopics/adolescent.html
Autism books concerning adolescents.
AUSTRALIAN ADVOCACY ORGANISATIONS
Association for Children with a Disability
http://www.acd.org.au/
Action for Community Living
www.advocacyhouse.org/acl/about.html
Action on Disability within Ethnic Communities
www.adec.org.au
Disability Rights Victoria
www.advocacyhouse.org/drv/about.html
Equal Opportunity Commission Victoria
www.equalopportunitycommission.vic.gov.au
Human Rights and Equal Opportunity Commission Disability Unit
www.hreoc.gov.au
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Autism Spectrum Disorders ASSESSMENT TEAMS IN VICTORIA
Austin CAMHS - Developmental Assessment Program
Austin Health - HEIDELBERG
Telephone (03) 9496 3620
RCH Mental Health Services Travancore - Autism Spectrum Assessment Team
50 Flemington Street - FLEMINGTON
Telephone (03) 9345 6011
Alfred CAMHS- Developmental Assessment Service
999 Nepean Highway - MOORABBIN
Telephone (03) 8552 0555
Monash Autism Program
Monash Medical Centre - CLAYTON
Telephone (03) 9594 1300
Gateways Support Services (for children under age 6)
10-12 Albert Street - GEELONG WEST
Telephone (03) 5221 2984
Eastern CAMHS
Maroondah Hospital, RINGWOOD
Telephone (03) 9870 9788
North East CAMHS - Autism Spectrum Assessment Team (ASAT)
WANGARATTA - Telephone (03) 5722 4837
WODONGA - Telephone (02) 6024 7711
Northern Mallee CAMHS - Autism Spectrum Support & Evaluation Team (ASSET)
107 Pine Avenue - MILDURA
Telephone (03) 5018 7900
Gippsland Autism & Related Disorders Assessment Service
LRH Mental Health Services - TRARALGON
Telephone (03) 5171 1255 (Triage)
Barwon Children's Health Service (will assess school age children only)
1 Reynolds Road - BELMONT
Telephone (03) 5226 7075
Bendigo CAMHS - Autism Assessment Team
BENDIGO
Telephone (03) 5440 6500
Grampians Region Autism Assessment & Diagnostic Team
BALLARAT - Telephone (03) 5320 4100
Goulburn Valley CAMHS - GV Autism Spectrum Assessment Team (ASAT)
Operating in SEYMOUR and SHEPPARTON
Telephone (03) 5799 0943
Warrnambool CAMHS
WARRNAMBOOL - Telephone (03) 5561 9100
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APPENDIX 1
SEXUALITY ISSUES AND THE ADOLESCENT WITH
AN ASD.
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PHYSICAL AND SEXUAL DEVELOPMENT:
Looking and feeling different
This section discusses the changes in physical and sexual development that
adolescence brings. These can be both exciting and stressful for all teenagers and
particularly for young people with autism spectrum disorders and their parents. For
the most part, these issues will be dealt with in the home and with parents but it may
be necessary to discuss managing sexuality with parents as part of a broader-based
education programme at school.
Physical development
Biological changes and physical maturation of the body involving growth in size and change
in profile are probably the most obvious changes that we see in the maturing adolescent.
Early adolescence is characterised by puberty, the process that changes the immature child
into a sexually mature person. The reproductive glands (the ovaries in girls and the testes in
boys) together with the adrenal glands, the pituitary gland and parts of the brain switch on
and interact to secrete sex hormones into the bloodstream. New hormone levels (more
androgens in boys, more oestrogen in girls) lead to the dramatic outward physical and inward
organ (including the brain) changes of puberty. It takes about four years from the beginning
of this process for a child’s body to change into an adult’s body. Hormone secretion
continues to increase throughout adolescence and peaks at about twenty years of age.
Children progress through puberty at different rates and times. For example, one girl may
reach full breast development in a couple of years and another may take four years to reach
the same development. Some body parts may initially be disproportionately large (usually
hands and feet) and growth spurts occur at an uneven pace. For example, have a look at a
photograph of the sculpture by Michelangelo of the youth David who slew Goliath with his
sling shot.
For example:
Adam who has autism suddenly started to grow rapidly at the age
of 13. For the next year he often knocked crockery off the dinner
table and kept bumping into furniture, doors and people.
Girls. From about the age of ten, girls grow taller, hips broaden, and they add normal body
fat. This fat tissue which also is a store for oestrogen particularly gathers above the pubic
are, hips and thighs. This growth usually peaks at about twelve years of age. Breast
development starts at about ten and reaches full size about three years later. About the same
time the uterus and vagina begin to mature and the voice lowers. Pubic hair usually appears
when a girl is about eleven and underarm hair about two years later. Menarche (the first time
a girl menstruates) may occur at any time from between ten and seventeen years. For girls,
the reaction to their first period may depend upon how well they have been prepared for this
event. Girls with autism are no different to others in this regard. The difficulty for parents will
most probably be adjusting the type of preparation and the time needed for this according to
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their daughter’s level of understanding. It is a time for simple and clear instruction. For some
less able girls it is necessary to instigate a pad programme and picture system a couple of
years before you anticipate her periods will start (perhaps as early as 8 or 9 years of age).
For others who are more able, the sexual development classes at school, discussion with
parents and simple, illustrated books may well suffice.
Boys. Boys usually begin their growth spurt later than girls and it usually peaks at about
fourteen years of age. Most will reach their adult height by about sixteen but some may not
begin this growth spurt until that age. Shoulders become broader, weight increases because
of increased muscle (rather than an increase in weight due to increased oestrogen storing
body fat for girls). From about twelve, the penis and scrotum become larger and will be a
mature size in three to four years. About eighteen months after the penis has begun to grow,
a boy is able to ejaculate semen, but even infant boys may have erections if their penis is
stimulated. By the time a boy is about fifteen years old, his semen contains mature sperm.
Pubic hair grows at the same time that the genitalia grow and underarm and facial hair
appear about two years later. As the larynx becomes larger, the vocal cords lengthen and the
voice becomes deeper after going through a period of fluctuation (voice breaking).
A rapidly changing body!
Physically adolescents grow more rapidly during puberty than at any other stage except in
infancy which often leaves them looking and feeling awkward and different. Because visible
body parts grow at differing times, the overall effect is one of a body that is different,
ungainly, awkward, clumsy and hard to coordinate and strange. Head, hands and feet grow
fastest and will reach adult size before the rest of the adolescent’s body. Next to grow are the
neck, arms and legs with the trunk being the last to grow.
For most adolescents the physical changes that they experience at this time have a
significant effect on how they feel about themselves. Most will spend time looking at their
bodies and be preoccupied with looking at themselves in a mirror. For example teenagers
can usually recognize their own nose in a group of photographs of noses, but adults are
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mostly unable to do this. Some will feel proud of the changes in their body while others may
be embarrassed or have a mixture of these feelings. Peer pressure about early or late
maturation can affect the teenager’s self esteem in either a positive or negative way. For
example the boy who begins a growth spurt and is taller and more muscular than his peers
may be proud of these obvious signs of physical change. On the other hand, a girl who has
developed breasts earlier than her peers and begun to change from a slim pre-pubertal
shape to a more mature shape with additional body fat may feel embarrassed and have
negative feelings about weight gain.
Remembering that most young people with autism spectrum disorders don’t like change,
these bodily changes can be overwhelming. To those who have particular sensitivity to smell,
the appearance of body odour and perspiration can be distressing. For boys, the sudden
appearance of thick hair on their legs and facial hair is more than a little surprising!
Steve’s mum said:
Steve is fourteen now. He goes to special school. Over the past
few months he has started to grow fuzz on his top lip and chin.
I found him in the kitchen trying to cut the fuzz off and he was
crying because he cut himself. That made me realize that he
didn’t know anything about boys having hair on their faces and
that it was quite normal. We talked to the teacher at school
about getting some pictures to help him understand, and he’s
having shaving lessons with his Dad.
On the other hand, sometimes adolescents aren’t really aware of the changes in themselves.
Here is an example.
Talking to James who has grown 10 cm in 6 months:
“You’re thirteen now James. Have you noticed any changes in
yourself?”
J: “What do you mean?”
“Has your body changed at all lately?”
J: “Well, my balls have dropped”
“Anything else?
J: “Not that I can see”
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How can we help?
Just as in the past parents have prepared their children for change, now is also a time to help
the adolescent to be prepared for the changes in him/herself over the next few years.
Preparing adolescents for the changes that will occur can be very helpful and also minimize
confusion and fears abut their changing bodies. Ideally, education about puberty needs to
start well before it is actually occurring to be most beneficial to each young person. There is
great variation in physical growth and development throughout adolescence; it will be still
relevant to some families to be teaching their sons/daughters about change in body shape,
size, and looking and feeling different before it starts to happen.
It is probably best to initially teach adolescents about changes occurring for their own sex at
this stage rather than complicating the issue by discussing the other sex; so relevant
information about boys for boys and girls for girls is necessary at this stage.
Tips:
• Try visual supports
•
Worksheets with photographs to describe physical changes, picture and visual
matching activities, sequencing cards, step by step instructions will all be helpful for
teaching information about physical development and bodily changes
•
Photographs that cover different ages and stages can help the adolescent to look back
on the changes and growth that have already occurred in themselves
•
Teach by pictures, social stories and actual demonstration about changes to hygiene
routines. How to use deodorant, shaving facial hair, managing menstruation and
wearing a bra, are some of the new skills that it are necessary for adolescents to
learn.
Boardmaker© can be used to develop teaching materials about growth and development
issues. (Boardmaker© is a computer program which uses the Mayor- Johnson Picture
Communication Symbols and other line drawing clip art. The program is used to create
communication boards. There are symbols to represent many nouns, verbs, and adjectives).
Diet, exercise and sleep
Adolescence can be a time when parents are concerned about their son/daughter’s weight
and eating habits. An overweight adolescent in most cases will become an overweight adult.
Adolescents typically enjoy foods that are high in fat, sugar and salt and may eat beyond
their needs at this time. The rules for a healthy diet are moderation, variety and balance and
eating fresh food daily from the major food groups (Bennett and Rowe, 2003). Breakfast is
important and should never be missed. Ideally, breakfast should comprise of a variety of
foods such as milk, cereal, toast, eggs and fruit for a good start to the day and provide some
of the calcium and iron needs. Growing bones need calcium during adolescence and good
sources of this are milk, yoghurt and cheese. It may be easier to not have junk food and
sugary drinks at home or packed in school lunches if the teenager has a passion for sugar,
salt and fat.
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Does the student eat daily from each of
these food groups?
bread, cereals, rice, pasta, noodles
vegetables, legumes, fruit
milk, yoghurt, cheese
meat, poultry, fish, eggs, nuts
It can be difficult to get some teenagers moving! Typically, adolescents spend a lot of time
watching TV, playing computer games and are often driven to destinations rather than have
to walk. Inactivity will increase the likelihood of weight gain in this age group. There is no
doubt that about 30 minutes of exercise a day (the sort that raises a sweat) will be of benefit
to overall improvement in health.
Bennett and Rowe (2003) list the following benefits of regular physical exercise:
•
•
•
•
•
effective muscle control will improve posture
as physical endurance increases fatigue decreases
exercise can be an effective way of coping with stress and anxiety because tension
decreases with physical activity
weight is more easily controlled
can ward off strokes and heart attacks in later life (p.90)
Doesthe student do any of the following
daily?
play a team sport
jump on a trampoline
walk for more than 15 minutes
ride a bike
swim
go for a run
walk the dog
ride a scooter
Some children with ASDs have a history of poor sleeping. This may have settled during
middle childhood only to return in adolescence. Adolescents who are going through their
“growth spurt” may complain of tiredness and seem to need more sleep. There is a theory
that growth hormone is secreted during sleep and it may well be true that the adolescent may
have literally grown overnight. Some have had a bedtime routine when they were little.
Adolescents can also benefit from a structured bedtime routine to help them settle easily and
have a good night’s rest.
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Students who arrive at school after a restless night with little sleep will definitely not perform
well at school. It is often helpful to have some discussion about sleeping patterns with
parents of the student you are working with.
These are some suggestions to pass on to parents
:
• Get homework finished about one hour before going to bed so that there is time to
unwind
• Dim lights
• Have some quiet music playing
• Listen to a story tape
• Read a favourite book
• Drink a glass of milk
• Do some relaxation exercises
MANAGING SEXUAL DEVELOPMENT:
Managing a changing body and sexual development.
This section discusses the practicalities of helping the adolescent to prepare for,
adjust to and manage the physical, emotional and sexual changes that occur at this
time. In particular it discusses managing personal hygiene, modesty and
masturbation.
Adolescents with ASDs may have differing responses to the changes in their bodies at this
time. Physical changes may cause distress in an adolescent with a strong resistance to
change. Body hair, pimples, body odour, large hands and feet together with poor motor
coordination and clumsiness can all be sources of stress as adolescents become used to
their growing and changing body.
Most young people with an ASD have difficulty learning new things. This may be due to
difficulty processing auditory information, having a limited vocabulary or poor problem solving
skills. Adolescents who don’t have autism learn about the changes in themselves at puberty,
their developing sexuality and relationships with others in a number of ways. One of these is
through their interactions with their peers, where opportunities to talk about these things
arise. The young person with an ASD typically has far fewer opportunities to do this because
of difficulties interacting with others, poor understanding of social rules and little or no
opportunity to interact with a peer group or circle of friends. They will not be able to model
their social behaviour on others very successfully and will not generally be able to learn what
to do by watching or listening to other teenagers at school, or they may misinterpret or
inappropriately apply what they see or hear. For them, it is more likely that they will need to
be taught about growth and development, personal hygiene, and sex education, in a direct,
simple and clear manner at their level of comprehension. Young people with ASDs usually
have better visual skills. Therefore it makes sense that teaching around these issues of
puberty and sexuality will be more easily understood if pictures and visual supports are used.
This is so even for the higher functioning adolescents.
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Wrobel (2003) was faced with the challenge of developing a sex education curriculum for
young people with autism spectrum disorders. She devised a curriculum to teach children
and adolescents about sex by addressing the issues of: hygiene, health, modesty, growth
and development, menstruation, touching, personal safety and masturbation. These seven
components cover “essential information students with autism and other disabilities will need
to lead healthy and safe lives” (Wrobel, 2003, p. IX). We highly recommend this programme
to parents, care givers and teachers. For the purposes of this parent education programme,
we will look at the issues of personal hygiene, modesty, and masturbation.
Hygiene
Learning about hygiene is obviously important for all of us. By this stage, being the parent of
a child 12 -14 years of age, you have probably spent years teaching him/her how to do the
basics – dress, clean teeth, have a shower or bath, wash and brush hair, blow nose and
wash hands. As children become older, learning independent hygiene skills is even more
important. Adolescence is a time when all young people must pay particular attention to
personal hygiene issues.
The more able adolescents with HFA or Asperger’s Disorder will probably manage to learn
new hygiene skills more easily than those who are less able but may not be aware of the
necessity for changes to the washing and grooming routines that they learnt in the past.
Adolescent hygiene routines will now include learning to use deodorant, when to put on clean
clothes, managing finger and toe nails, caring for acne (zits) and managing menstruation or
semen. The emphasis at this stage is to strive for independence. Keeping in mind the fact
that all young people with autism are better visual learners, the use of social stories,
behaviour scripts, rule books and picture routines will all be helpful. These can be prepared
at a level that is relevant to each adolescent’s developmental level. Also keep in mind that
young people with autism learn best by doing rather that watching or listening, so grooming
and washing are best taught at home in the bathroom when appropriate. Some skills can be
taught at school but will still need regular practice at home in a naturalistic setting. These self
care behaviours should be taught in the spirit of fun and pride about growing up rather than
criticism, disgust or arrogance. Self esteem is fragile in most adolescents and should always
be nurtured.
Of course, depending upon their level of understanding, some adolescents with autism will
not become totally independent with regard to personal hygiene. However, it is still important
to try to develop as much independence in these young people with autism as possible. To
be able to wash, shave and dress independently with the assistance of visual support or task
schedules is far better than the adolescent relying on hand on hand assistance and the
presence of another person.
Robert had always and only worn sneakers with some red in their design.
Now that he was a teenager his feet and sneakers smelled offensively.
This was a problem at home and school that required an urgent answer.
His mum spoke to the teacher about this and together they prepared a
social story with photographs about all the different types and styles of
shoes that could be bought at the shoe shop. After spending some time
going through this social story and photographs, Robert was able to
indicate the sort of shoes he would like to wear – instead of sneakers.
(Admittedly they did have red laces).
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Tips:
• Try visual supports
• Social stories and pictures
• Chaining – break down a new task into small steps and teach them one at a time until
the whole task is learnt
• Schedules for tasks with step by step instructions (particularly in the morning)
Some of the tasks that parents want their adolescent to learn can be discussed with teachers
at school. One way that parents may be able to work together with teachers may be that the
teacher will develop the picture cards necessary for a new skill or help with the steps for
teaching a new skill with the chaining technique. Sequencing cards can be made so that an
activity is be broken down into steps that the adolescent arranges in order from start to finish.
These tasks might be table top activities before the skill is learnt in situ. Fill in the blank
worksheets for a particular skill, or photographs with clear mistakes in them can be used to
determine the adolescent’s understanding or comprehension of the task. For example,
“what’s wrong with this picture?” when the person is about to eat a meal with clearly dirty
hands.
Modesty
Wrobel described modesty as “the foundation for safe and acceptable personal behaviour in
social situations” (Wrobel, 2003, p 97). For many young people with an autism spectrum
disorder , the concept of modesty can be difficult to understand.
We need to help them to get it right in terms of:
• when it’s OK to be naked
• when clothes need to stay on
• which clothes need to stay on for the sake of “decency”
• how to dress properly
• which parts of the body are private?
• Which parts to be covered almost always (genitals)
• who can and cannot see you naked
• the concept of respecting other peoples’ bodies other people needing privacy
Once again, the impact of the thinking style of young people with an ASD with regard to
resistance to change and difficulty accepting new limits or new rules can be problematic
around issues of modesty. The growing adolescent body is no longer childlike. The option for
a child with an ASD, who has sensitivity to certain fabrics and has been allowed to take off
his clothes when he arrives home after school, is no longer appropriate when he is an
adolescent. But how do we teach the adolescent that this behaviour is no longer acceptable?
How do we teach the thirteen year old with an ASD that he can’t barge into his teenage
sister’s room any time he feels like it, or to go into the girl’s change area at school? At
fourteen, girls can’t wander about the house naked, including into the lounge room when
friends of the parents are visiting, after a shower. Their clothes should be available in the
bathroom rather than laid out on their bed as in the past.
There are some very important reasons for educating young people with ASDs about
modesty and particularly the issue of private parts of their body and who may see them.
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•
It is important that young people understand that they should tell their parents,
teachers or carers about any request from anyone to take their clothes off or to look at
or touch private parts of their bodies. The protection issue here is essential and it is
necessary to teach the adolescent which adults they know can be trusted to tell about
any such instance. Young people need to know that it is important to tell the truth
despite what anyone has told them about not telling. Young people also need to know
that they will be listened to.
•
Immodesty or exposing oneself in public is against the law and immoral. Exposure can
also threaten the young person’s safety as well as be embarrassing to the person
themselves and others.
•
Immodesty may also invite unwanted attention or lead to abuse (Wrobel, 2003).
Tips:
• Try visual supports
• Social stories and pictures e.g. What’s OK and appropriate; Who can I talk to about
my body? Who can see my private parts? It is best to teach, depict or model the
positive and appropriate behaviour. Depicting inappropriate behaviours (even with a
strike through symbol) may give the wrong idea or reinforce inappropriate behaviour
• Specific, concrete rules
• Pocket sized rule books for portable, constant reminders of what to do
Masturbation
The approach to teaching adolescents about masturbation might well be described as the
young person learning that there is “A time and place for everything”.
Masturbation is a natural activity; adolescents do not need to be taught how to masturbate.
Normally developing young children discover that masturbation is pleasurable and comforting
and might begin the activity at an early age. The same is true for young children with ASDs.
Trying to control masturbation by forbidding it will not work.
The lessons for adolescents with ASDs to learn are:
•
•
•
•
it is OK to masturbate
it is a completely private activity
it is not discussed with other people and
it can only be done in certain places
Learning about the rules and boundaries that apply to masturbation is important once the
adolescent has begun to masturbate and parents or others are aware of the activity. An
educative and non judgemental approach to masturbation will be most helpful to an
adolescent with autism rather than a punitive approach or one that forbids the young person
to masturbate. The latter is more likely to escalate a situation into problem behaviour. If the
young person is allowed time and a place to masturbate, a measure of control can be
introduced. The adolescent who does not have information about the right time and place is
more likely to masturbate in the wrong place at the wrong time!
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The need for rules and boundaries is obvious. The difficulty is how we teach the adolescent
these rules and boundaries. As for other concepts about growth and development, social
stories, picture supports, rule books and behaviour scripts can be used. It is most important
that the young person learns where he/she can masturbate (usually in his/her bedroom or the
bathroom) and that it is a private activity. Adolescents who are not taught these rules are
likely to get into trouble and be met with stern disapproval by others. Masturbation at
inappropriate times and places may also put an adolescent at risk of abuse. If other
approaches fail, a programme of rewards for not masturbating in public, school, or elsewhere
might help move this normal activity to an appropriate private place such as the youth’s
bedroom.
Graeme who had little language had always watched television lying
front down on a cushion.
At 13 years old, his masturbation in this position became more
obvious to his family and his sister and her visiting girlfriends.
Management involved his parents moving his cushion and a small TV
into his bedroom and the reward of favourite videos if he sat in a new
chair of his own and watched the TV. He was also directed to go to
his cushion and room if he started to touch his genitals in public.
** Any sex education or personal hygiene teaching programmes must discussed with
parents at the SSG meeting and agreed upon before they are instigated.
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APPENDIX 2
DEVELOPMENTAL BEHAVIOUR CHECKLIST
INFORMATION
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OVERVIEW OF THE DEVELOPMENTAL BEHAVIOUR CHECKLIST – DBC
What is the DBC?
The DBC is a 96 item checklist that assesses a broad range of behavioural and emotional disturbances
in young people with intellectual or developmental disability aged between 4 and 18 years. It is
completed by parents or other primary carers or teachers. This should take no more than 15 minutes.
The items were independently derived from a study of the medical files of 7000 intellectually disabled
children and adolescents seen in a developmental assessment clinic.
Structure of the DBC
There are parent/primary carer (DBC-P) and teacher report (DBC-T) versions of the DBC. The parent
version has 96 items and is completed by the person fulfilling the primary carer role and who has
known the young person for at least 6 months. The teacher version has 94 items and is completed by a
teacher who has known the young person for at least 2 months.
Scoring the DBC
Each behavioural description is scored on a 0, 1 or 2 rating scale.
0 = not true as far as you know
1 = somewhat or sometimes true
2 = very true or often true
The DBC is scored at three levels
1. The Total Behaviour Problem Score (TBPS) is an overall measure of emotional and behavioural
problems. The DBC can also detect clinically significant levels of overall emotional and behavioural
disturbance (a score of 46 or greater).
2. Five subscales (derived from factor analysis) - scores give a measure of disturbance across five subscales: Disruptive/Anti-social Behaviour, Self-absorbed, Communication Disturbance, Anxiety and
Social Relating.
3. Individual behaviour items – indicates the prevalence and severity of individual items.
The DBC can be used for the following purposes:
1. Clinical Assessment
The DBC can be used in conjunction with a clinical assessment as a complementary and quick method
of obtaining information about the presence or absence of a number of different emotional and
behavioural problems. Information from teachers can give important information about whether the
behaviours occur in contexts outside the home.
2. Change over time and monitoring interventions
Repeated administration of the DBC provides an effective means of following change and measuring
the consequences of an intervention, e.g. the introduction of medication or a behavioural intervention
program.
3. Research
The DBC can also be used in research studies into the phenomenology and aetiology, treatment
outcomes, specific behaviour problems and causes of intellectual disability.
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The use of the DBC as a screening instrument for autism
1. DBC-ASA
The effectiveness of the DBC as a screening tool has been evaluated. A recent study determined that
the DBC can be used as a reliable and valid autism screening tool (Brereton et al, 2002). A 29 item
scale - the DBC Autism Screening Algorithm (DBC-ASA) was developed using items form the DBC
and evaluated in a sample of 180 children with autism (DSM-IV Autistic Disorder) and 180 controls
matched for age, sex and IQ. The DBC-ASA has good validity in discriminating young people (aged 418) with autism and IQ ranging from normal to severe intellectual disability from others using a cut-off
score of 17.
2. DBC Early Screen
This study aimed to identify emotional and behavioural problems specific to young children with
autism using the Developmental Behaviour Checklist (DBC-P) and evaluate the efficacy of this
checklist as a screening tool for autism in children with developmental delay aged 18-48 months.
Subjects were 60 children with autism and developmental delay and 60 children with developmental
delay without autism. Features were identified which differentiated the children with autism from those
with developmental delay without autism. Analyses revealed that a 17-item version of the DBC-P
performed well as a screening tool for autism. The DBC-P offers a potential simple and inexpensive
method of screening at risk populations of preschool children with developmental delay for autism,
facilitating timely referral to scarce specialist autism diagnostic services.
Translations
The parent version of the DBC is available in the following languages: Arabic, Chinese, Croatian,
Dutch, Finnish, French, German, Greek, Hindi, Italian, Japanese, Norwegian, Portuguese (Brazilian),
Spanish, Swedish, Turkish and Vietnamese.
References
Brereton, A.V., Tonge, B.J., A. Mackinnon & Einfeld, S.L. (2002). Screening Young People for
Autism Using the Developmental Behaviour Checklist. Journal of the American Academy of Child and
Adolescent Psychiatry, 41 (11) 1-7.
Clarke AR, Tonge BJ, Einfeld SL, et al. (2003). Assessment of change with the Developmental
Behaviour Checklist. Journal of Intellectual disability Research, 47: 210-212 Part 3.
Einfeld, Stewart, L. and Tonge, Bruce, J. (2002) Manual for the Developmental Behaviour Checklist
(second edition).
Gray KM, Tonge BJ (2005) Screening for autism in infants and preschool children with developmental
delay. Australian and New Zealand Journal of Psychiatry, 39 (5): 378-386.
For more detailed information and further references:
http://www.med.monash.edu.au/psychmed/units/devpsych/dbc.html
DBC materials enquiries should be directed to:
[email protected]
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