Download Autism Next Steps: The Day after the ASD Diagnosis

Autism Next Steps:
The Day After the ASD Diagnosis
Prachi Shah,MD
Associate Professor, Pediatrics
Division of Developmental-Behavioral Pediatrics
Center for Human Growth and Development
[email protected]
Objectives
1. To present the DSM-V diagnostic criteria
and clinical symptoms of ASD
2. Discuss the diagnostic evaluation of
children with suspected ASD
3. Discuss the medical / therapeutic
treatments for children with suspected
ASD
4. Discuss how to advocate for your patient
with ASD in the school system
1. Clinical Presentation of ASD
Autistic Spectrum Disorders (ASD)
Overview
• Neurodevelopmental disorder of unknown
etiology
• Strong genetic basis
• Behaviors present by 36 months of age
• Behavioral phenotype characterized by
persistent deficits as follows:
1. Persistent social communication and social
interaction
AND
2. Restricted and repetitive patterns of
behavior
(DSM-5, 2013)
(Diccico-Bloom, Lord, et al, 2006)
DSM-V Diagnostic Criteria for
Autism Spectrum Disorder
≥3 Persistent deficits in social communication
and social interaction in multiple contexts:
1. Deficits in social-emotional reciprocity
2. Deficits in nonverbal communicative
behaviors used for social interaction
3. Deficits in developing, maintaining, and
understanding relationships
• Difficulties adjusting behavior to suit various social
contexts
• Difficulties in sharing imaginative play or in making
friends; to absence of interest in peers.
DSM-V Diagnostic Criteria for
Autism Spectrum Disorder
≥ 2 Restricted, repetitive patterns of behavior,
interests, or activities:
1. Stereotyped or repetitive motor movements,
use of objects, or speech
2. Insistence on sameness, inflexible adherence
to routines, or ritualized patterns or verbal
nonverbal
3. Highly restricted, fixated interests that are
abnormal in intensity or focus
4. Hyper- or hyporeactivity to sensory input or
unusual interest in sensory symptoms.
DSM-5 : Severity of Symptoms
Severity
Level for
ASD
•
Level 1:
Requiring
Support
•
•
Level 2:
Requiring
Substantial
Support
Level 3:
Requiring
Very
Substantial
Support
Restricted Interests &
Repetitive Behaviors
Social Communication
•
•
Difficulty initiating social interactions,
and clear examples of atypical or
unsuccessful response to social
overtures of others.
May appear to have decreased interest
in social interactions
Marked deficits in verbal and nonverbal
social communication skills;
Social impairments apparent even with
supports in place
Limited initiation of social interactions;
and reduced or abnormal responses to
social overtures from others
• Severe deficits in verbal and nonverbal
social communication skills causing
severe impairments in functioning
• Very limited initiation of social
interactions, and minimal response to
social overtures from others.
•
•
•
•
•
•
•
•
•
Inflexibility of behavior causes
significant interference with
functioning in one or more contexts.
Difficulty switching between activities.
Problems of organization and planning
hamper independence.
Inflexibility of behavior, difficulty
coping with change, or other
restricted/repetitive behaviors
Behaviors are obvious to the observer
and interfere with functioning in a
variety of contexts.
Distress and/or difficulty changing
focus or action.
Inflexibility of behavior, extreme
difficulty coping with change, or other
restricted/repetitive behaviors
Behaviors markedly interfere with
functioning in all spheres.
Great distress/difficulty changing focus
or action.
Clinical Symptoms of Autism
DSM-V
• Deficits in Social Communication
– Deficits in social reciprocity
• Limited eye contact
• Impairment in joint attention
Social
– Impaired nonverbal communication
• Restricted, Repetitive Patterns of
Behavior
–
–
–
Repetitive motor movements
Inflexible adherence to routines
Highly restricted, fixated interests
• Atypical Sensory Profile
Play/
Behavior
Baron-Cohen, 2004
A 6-minute snapshot into the world
of a child with ASD
https://www.youtube.com/watch?v=mc1H0aVqn20
A 1-minute snapshot of a child with
high functioning ASD
2. The Diagnostic Evaluation of ASD
Diagnostic “Gestalt”
• Checking your
Countertransference
• “Ceiling Fan
Question”
Observing Child Behavior :
Important Diagnostic Keys
Diagnostic Evaluation of Children
with Suspected ASD
PEDIATRICS, Volume 120, Number 5, November 2007
The Role of the Physician
• Screen
– Using a validated screening tool
• Suspect
– Autism if a failed screen
• Direct
– Patient for a comprehensive ASD
evaluation
Actively Screen for ASD
• American Academy of Pediatrics
Guidelines
– Screen for ASD at 18 and 24 months
• http://www.pediatrics.org/cgi/content/full/peds.20072361v1
• Use a validated screening tool for Autism
– Social Communication Questionnaire (SCQ)
– Modified Checklist for Autism in Toddlers (MCHAT)
Screen:
Social Communication
Questionnaire (SCQ)
• 40-item parent report questionnaire
– Administration: 5-10 minutes
– Scoring : 30 seconds
• Screens for autism-related symptoms
– Current form : symptoms in the last 3 months
– Lifetime form: symptoms throughout the
lifespan
• Scores >15 suggestive of ASD
SUSPECT
http://www.wpspublish.com/store/p/2954/social-communication-questionnaire-scq
M-CHAT-R: Modified Checklist
Screen:
for Autism in Toddlers
• Parent Report Checklist
– Age : 16-48 months (use at 18-24 mo.)
– Sensitivity= 0.85 / Specificity = 0.93
• Scoring: Y/N
– Failed items = NO except
– # 2,5,12 : Failed item = YES
– INTERPRETATION :
• 0-2 Low Risk
• 3-7 Moderate Risk : followup
• 8-20: Refer for ASD Diagnostic Evaluation
SUSPECT
https://www.m-chat.org/_references/mchatdotorg.pdf
Robbins, 2009
Direct:
Autism Spectrum Disorder
Comprehensive Evaluation
• Developmental / behavioral assessment
– Confirm presence of ASD using DSM-V criteria
– Assess cognitive and adaptive functioning with
standardized measures
• Genetics Referral
– Assess for dysmorphic features
– Laboratory assessment : Chromosomal
microarray, Fragile X
• Consider Speech and OT evaluation
• NO need for MRI or EEG
PEDIATRICS, Volume 120, Number 5, November 2007
Autism and Michigan
Legislation
Autism and Michigan
Legislation
Senate Bill 414 (PA 99): October 2012
• Coverage for treatment of ASD for children 0-18 yo
– 0-6 years old : $50,000/ year
– 7-12 years old : $40,000/ year
– 13-18 years old : $30,000/ ear
• Requires diagnosis of ASD by MD or Psychologist
• Covers evidence-based ASD related treatments
–
–
–
–
Applied Behavioral Analysis (ABA)
Pharmacy care
Psychiatric / Psychological Care
Therapies : PT/OT/ Speech
Direct:
ASD Comprehensive Evaluation
Michigan Requirements
• Medical
– Medical evaluation to confirm ASD Diagnosis
– DBP; Neurologist; Geneticist
• Behavioral
– Behavioral assessment to confirm ASD
diagnosis
– Includes ADOS or ADI
– Psychologist; Psychiatrist; DBP
• Speech
– Assess language and social pragmatics
 Services individualized based on patient’s needs
Accessing Autism Related Services
Medicaid / MI-Child
1. Refer for evaluations
2. Multidisciplinary
evaluation
–
–
–
Medical (MD/DBP)
Behavioral (Psych)
Speech/Language
3. Evaluation with
standardized
assessment
4. Consensus about
diagnosis documented
5. ERF completed
1. Screen for ASD
– M-CHAT / MCHAT-R
– Social Communication
Questionnaire
REFER to CMH
2. Complete ASD
Evaluations
3. Develop plan of service
4. Begin ABA
3. The Medical Management of ASD
Management of Children with
Suspected ASD
PEDIATRICS, Volume 120, Number 5, November 2007
Management of Children with ASD
• Developmental / Behavioral Therapies
– Speech Therapy; Occupational Therapy
– ABA
– Social skills training
• Medication management for target symptoms
– ADHD
– Aggression
– Sleep
• Education Interventions
– Interventions specific for ASD: 25 hrs/ wk, 12 mo. / year
– Special Education services under the qualification of
Autism / OHI
PEDIATRICS, Volume 120, Number 5, November 2007
Goals of Therapy
• Minimize Negative Symptoms
– Sensory Symptoms
– Difficult/ Rigid Behaviors
– Difficulties with emotional regulation
• Promote Skill Acquisition
– Communication skills
– Social skills
– Play skills
– Cognitive skills
Individualize for the child’s strengths and weaknesses
Speech Therapy
• Speech and
Language Therapy
– Address receptive/
expressive language
– Social Pragmatics
– Volume, prosody,
fluency
PECS Boards:
• Total Communication
Interventions
– Sign language
– Picture Exchange
Communication
System
Occupational / Physical Therapy
• Address Fine/
Gross motor delay
• Sensory integration
disorder
• Developmental
Coordination
Disorder
Behavioral Therapy:
Applied Behavior Analysis
• Uses positive reinforcement to encourage social and
communicative behaviors
• Breaks tasks down into small steps
– Making eye contact when name is called
– Pointing to indicate a request, joint attention
– Trying a new food
• Sets goals and assesses progress regularly
• Should involve the family – either home-based or
center-based education
• Needs to be 12 months/year to prevent regression
ABA in a Nutshell
The Umbrella of ABA
Discrete
Trials
DT
ESDM
Early Start
Denver Model
PRT
Pivotal
Response
Training
DIR
FLOORTIME:
Development/
Indiv. Difference/
Relationship
ABA Approaches
• Goal of ABA:
– Increase socially appropriate behavior
- ↑ Social communication)
– Decrease challenging behaviors (↓RRB)
• Basic principles/approaches:
– Reinforcement,
– Modeling,
– Prompting,
– Response interruption/redirection
– Extinction
– https://www.youtube.com/watch?v=7pN6ydLE4EQ
Stimulus
Behavior
+
Reinforce
Correct
Types of ABA
• Early Start Denver Model
– Parent-implemented intervention: Embeds
teaching within relationship-based daily activities
– https://www.youtube.com/watch?v=5m_cJQQVieU
• Floortime
– Includes highly motivating routines based on the
child’s interests
– Builds social/communication/play skills through
increasingly complex, playful interactions
– Similar to SCERTS (Social Communication,
Emotional Regulation, and Transactional Support)
– https://www.youtube.com/watch?v=gNAS9PskgYI
Parent Coaching
• Initiating, responding to, and sustaining play interactions
• Making requests, answering questions, having
conversations
• Using body language to communicate needs and
interests
• Understanding emotions and what to do about them
• Social attention, imitation, perspective taking
• Taking turns, following someone else’s agenda/plan
• Building flexibility, not getting “stuck”
• Recognizing that rigid/repetitive behavior are an attempt
to self-soothe or create a predictable world, increase
under stress.
Social Skills Training
• Peer-mediated interventions
• Social Thinking®
• Social Stories
Fostering Emotional Regulation
• Zones of Regulation
• Incredible 5 point
scale
Other Management
• Medication
–
–
–
–
To address co-morbid conditions
Tenex for hyperactivity/aggression or unsafe behaviors
SSRIs for anxiety or compulsive behaviors
Stimulants for executive functioning./ hyperactivity
• Biological therapies (limited to no evidence)
– Restricted diets
– Nutritional supplements and vitamins
– Omega supplement
4. The Educational Management of ASD
3-21 yo : Special Education
Division of the Public Schools
• IDEA Part B, requires that states provide a free
appropriate public education in the least restrictive
environment for children with disabilities ages 3
through 21;
• State of Michigan provides it to the age of 25 years
• Section 504 of the Rehabilitation Act requires that
schools make “reasonable accommodations” to
ensure that children are not denied a “free and
appropriate public education because of a
disability”
IDEA: Individuals with Disabilities
Education Act
6 Principles of IDEA
1.
2.
3.
4.
5.
Free and appropriate public education
Appropriate Evaluation
Individualized Education Program
Least Restrictive Environment
Parent and student participation in
decision making
6. Procedural safeguards
IEP-101:
Getting the process started
• Parent or professional can refer
• Request ‘evaluation for special education
services’ in WRITING
• Parents must sign consent
• Evaluation completed within 30 school
days of consent
IEP-101:
Evaluation
• MUST include:
– Educational history
– Specialist assessments
• MAY include:
– Intelligence and achievement testing
– Medical exam
– Family history
– Home visit
IEP-101:
Content of an IEP
• Individualized Education Plan
• Parent and Teacher Concerns
• Students’ current performance and
strengths
• Goals and benchmarks
• Services, structure of day, transportation
• Plan for evaluation
– Annual review of IEP
– Full re-evaluation every 3 years
Services Provided on an IEP
•
•
•
•
Special education services in LRE
Speech/language therapy
Occupational therapy
Psychological services/ individual
counseling/ family counseling
• Mobility Services (wheelchair ramp, elevator)
• Communication services (facilitated
communication, keyboarding)
• Transportation
Special Education:
Role of PCP
• Referral
– Provide letter template for parents
– Walk them through the steps and key timelines
• Communication
– With teacher, with IEP team
– May be present at evaluation
– Document diagnoses as needed
• Follow-up
– Address at WCC
– Advocate if need further support needed
– Evaluate new concerns or suggested diagnoses
504 Plan: School Accommodations
• Section 504 of the
Rehabilitation Act of 1973
– A student is “handicapped”
if s/he has a physical or
mental impairment that
substantially limits one or
more major activity
• “Special Education”: IDEA
Requires that all children with
disabilities receive a “free,
appropriate education” that meets
their needs
IEP Components for children with
autism spectrum disorders
Basic IEP Components
• Date (when is our next chance to easily suggest new
services?)
• Qualifying diagnosis (make sure it’s correct)
• Summary and Key Findings (gives sense of how well
they know the child)
• Accommodations
• Goals (appropriate to child’s current functioning;
include self-regulation, social skills, task
independence)
• Service Grid
• Additional Info
• Extended School Year (look for services in grid also)
School Accommodations
Accommodations
•
•
•
•
Use of visual supports/schedules
Sensory accommodations
Priming, prompting
Self-management strategies
Goals:
• Address short attention span
• Increase engagement with teaching or
group activities
• Promote task independence
• Decrease disruptive or stimming behaviors
Sensory Accommodations for
the Classroom
Promoting Task Independence:
Self-Management
Communicating with Teachers
Service Grid
• Consult for parents with specialists or
teacher on regular basis
• In home parent training
• Autism teacher consultant
• Direct services:
– SLT
– OT
– Social skills group (SLP or SW)
• Inclusion vs. sub separate placement
• Summer services
Approaches for Disruptive
Behavior
Functional Behavioral Analysis
Summing Up
• Help parent arrange outpatient and schoolbased services to build skills in deficit areas:
– Communication
– Social/play
– Behavior/emotions
– Academics/independence
• And help the parents themselves build
confidence and skills to implement
approaches at home, since this improves
outcomes.
The Role of the Physician
• Screen
– Using a validated screening tool
• Suspect
– Autism if a failed screen
• Direct
– Patient for a comprehensive ASD
evaluation
Autism A.L.A.R.M.
• A: Autism is prevalent
• L: Listen to parents
• A: Act early
• R: Refer
• M: Monitor
www.firstsigns.org
Thank you!
[email protected]