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Developmental Conditions Conditions • Autism spectrum disorders • Intellectual disability • Sensory integration continuum Contributors on Autism Spectrum Disorder • Amy Szarkowski, PhD • Susan Wiley • Christine Yoshinaga-Itano, PhD • Deborah Mood, PhD Potential Topics • Section 1:Understand the rates and age of diagnoses of ASD in Deaf/HH > general population • Section 2: Recognize atypical development in children with the dual diagnosis • Section 3: Describe interventions used for children with ASD which can be applied/adapted for children who are D/HH • Section 4: Improve family support and access to resources Section 1 • Understand the rates of ASD in Deaf/HH > general population • Understand the impact of the late age of identification of ASD for children who are D/HH Impact of UNHS/EHDI on language outcomes • Universal Newborn Hearing Screening has allowed the earlier identification of children with hearing loss • This subsequently enhances age of intervention with data to support language outcomes in the average range for early identified children • With this improved language trajectory, we should be striving for earlier identification of children with co-existing autism spectrum disorders, however diagnosis can be challenging due to a lack recognition and of validated assessment tools Why it is important • As ~ 4% of D/HH children have ASD, this communication disorder further complicates communication development • Limited availability of skilled diagnosticians and of appropriate interventions for needs for BOTH D/HH and ASD • Misdiagnosis can greatly impact outcomes in this group of children Rates of ASD • Increasing over time, possibly related to: – increased awareness – broader diagnostic criteria – study methods for monitoring rates – changes in educational labels over time – true increase Epidemiology CDC reported Prevalence Rates Annual Survey reported Prevalence Rates (D/HH) (general population) 2004-2005 1:125 1:111 2005-2006 1:110 1:94 2006-2007 - 1:53 2007-2008 1:88 1:81 2009-2010 1:68 1:59 The Disparity • Later diagnosis of ASD in children who are D/HH is common • The average age of identification of ASD in children who are D/HH often is far outside the goal we have to address communication needs of young children with ASD Age of Identification of ASD • Median age of diagnosis in children without hearing loss1: – Autistic disorder: 48 months – ASD/PDD: 53 months – Asperger’s: 75 months • For children with hearing loss, age of diagnosis of an autism spectrum disorder tends to occur at older ages (nearly 1 year later)2 1. CDC. MMWR (2012). 61 (SS03);1-19. 2. Mandell et al. Pediatrics (2005).116;1480-86 Meinzen-Derr, J et al “Autism Spectrum Disorders in Children who are Deaf or Hard of Hearing” International Journal of Pediatric Otorhinolaryngology 2014 Jan;78(1):112-8 Lack of Clarity • Data on association of severity of HL and ASD have mixed results – Impacted by data source, limitations in reporting • Diagnostic clarity Prevalence of Autism based on Severity of Hearing Loss Data is provided here from the Annual Survey of Deaf and Hard of Hearing Children and Youth Conducted by the Gallaudet Research Institute Published in Szymanski, Brice, Lam and Hotto, 2012 The diagnosis: A dilemma? Dilemma of underdiagnosis • Is it the right one? • Lack of diagnosis = lack of early intervention = lack of possible gains later in life • Lack of appropriate services Dilemma of overdiagnosis • Is it the right one? • Supports and intervention, if not appropriate, may not help symptoms nor prepare families • Schools and professionals may not accept the child Diagnostic Challenges Lack of standardized assessment tools for Deaf/HH Providers - trained in deafness or ASD, not many trained in both Providers trained in ASD - may not understand complex needs of D/HH children (Communication, development, behaviors, etc.) Children will act differently in different settings (multiple sources of information helpful) Assessment Challenges When Using Interpreters May not know/recognize or convey atypical language features if noted Potential to disrupt rapport necessary for assessing social reciprocity The role of an interpreter may be unclear Why is it important? ASD and HL When there are two reasons for communication problems and those problems span varying expertise (teachers of the deaf, educators with expertise in autism)…. it can be very challenging to implement effective strategies to develop communication and social interaction Section 2 • Recognize atypical development in children with the dual diagnosis What is ASD: DSM Criteria changes in 2013… • DSM V revisions – Autism Spectrum Disorders • Includes autism, Asperger Syndrome, PDD-NOS, and CDD – Concentrates required features • Social/communication deficits • Restricted, repetitive patterns of behavior, interests, activities – Addition of sensory criteria – Increases specificity while maintaining sensitivity • Important to distinguish spectrum from non-spectrum developmental disabilities • Improves stability of diagnosis DSM V Criteria- Social Communication • Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, manifested by all 3 of the following: – Deficits in social-emotional reciprocity – Deficits in nonverbal communicative behaviors – Deficits in developing and maintaining relationships appropriate to the developmental level DSM V Criteria- Restricted/Repetitive Behaviors • Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least 2 of the following: – Stereotyped or repetitive speech, motor movements, or use of objects – Excessive adherence to routines – Highly restricted, fixated interests that are abnormal in intensity or focus – Hyper- or hypo-reactivity to sensory input or unusual sensory interests** DSM V Criteria • Symptoms must be present in early childhood • Symptoms together limit and impair everyday functioning • Symptoms not explained by intellectual disability or global developmental delay • Other diagnoses may be present (ie ADHD) Severity Level • Level 1- Requiring Support – Without supports in place, deficits in social communication cause noticeable impairments – Inflexibility of behavior causes significant interference with functioning in one or more contexts • Level 2- Requiring substantial support – Marked deficits in verbal/nonverbal social communication – Inflexibility results in causes significant interference with functioning in one or more contexts. • Level 3- Requiring very substantial support – Severe deficits in verbal/nonverbal social communication – Severe inflexibility; difficulty coping with change, or other restricted/repetitive behaviors Pre-Linguistic Communication Red Flags for Autism in Hearing Children Behavior Barbaro, J. and Dissanayake, C. Prospective Identification of Autism Spectrum Disorders in Infancy and Toddlerhood Using Developmental Surveillance: The Social Attention and Communication Study. Journal of Developmental & Behavioral Pediatrics. 31(5):376-385, June 2010. 8 months 12 months 18 months Eye Contact X X X Turning to Name Call X X Imitation 24 months X Pointing X X X Gestures-Waving X X X X X Pretend Play Showing Behaviors Fail Criteria X Fail 2/2 Fail 3/4 Fail 3/4 Fail 3/5 “Red Flags” for a possible ASD in children who are Deaf/HH • Atypical preverbal communication – poor eye contact, lack of pointing, poor orientation for communication, poor joint attention – delays in language acquisition beyond what one could expect based on hearing loss/etiology/intervention history • Atypical language features – echolalia, palm rotation errors, persistent gesture use despite instruction in formal sign and use of formal sign by others in the child’s environment (distinct from home signs) • Social difficulties – failure to initiate/respond to peers when communication taken into consideration, failure to recognize Deaf cultural norms, etc • Repetitive behaviors/restricted interests Deficits in Social/Communicati on Deficits in social/emotional reciprocity ASD Atypical social approach Difficulty with reciprocal conversations Reduced sharing of affect /interests/ enjoyment and limitations in social interaction Typically developing D/HH Appropriate social smile Appropriate eye contact Engages others in their environment with integrated eye contact, give/show behavior, gestures, vocalizations Imitate motor/vocal/signs Appropriate joint attention Deficits in Social/Communication Deficits in social/emotional reciprocity D/HH + ASD Reduced/absent social smile Limited or inconsistent eye contact Limited give/show behavior Reduced sharing of affect Difficulties with joint attention Difficulty engaging in social conversation at one’s language ability level Does not readily respond to name or culturally appropriate attention getting measures Difficulty understanding others’ needs and feelings or processing facial/signed emotion cues Deficits in Social/Communicati on Deficits nonverbal communicative behaviors ASD Poorly integrated verbal/nonverbal behavior Abnormalities in eye contact and body language Limited facial expressions/gestures Difficulties in understanding nonverbal cues Typically developing D/HH Appropriate eye contact Well integrated gestures/eye contact/vocalizations Wide range of facial expressions; use of ASL facial grammatical markers Will learn incidentally with visual/auditory access, the sequence of learning language will follow typical developmental norms May have difficulties with vocabulary, grammar, word order, idiomatic expressions and other aspects of verbal communication Deficits in Social/Communication and social interaction Deficits nonverbal communicative behaviors D/HH + ASD Limited gestures Lack of pointing for shared enjoyment Difficulty with choice making (e.g. pointing to make choices) Using others as objects for communication (e.g. hand as tool) Abnormal prosody of speech/sign May demonstrated poorly integrated sign and spoken language (if utilizing total communication approach) Shifting of signing space below typical visual spatial space Poor understanding/use of integrated ASL facial grammatical features36 Gaps in acquisition of language and delays beyond expected for hearing loss/intervention history/accessibility of language Limited spontaneous language use of words within child’s repertoire for social communication (e.g. to comment, share, request). Limited range of facial expression or poorly coordinated Difficulty grasping Deaf cultural norms (e.g. use of attention getting strategies, entering/exiting conversations) Language features of ASD in ASL Features similar to oral language but may present differently in visual language • • • • Palm reversals (Shield, 2014) Pronoun avoidance vs. pronoun reversal (Shield, 2014) Echolalia Persistent use of individual’s own gestures rather than formally instructed/used sign vs. neologisms (e.g. “red” vs. “ketchup”) • Failure to use appropriate sign space • Mixed results regarding use of facial aspects of sign language and impact of ASD (Denmark, 2011,2014) Deficits in Social/Communicati on Deficits in developing and maintaining appropriate relationships to the developmental level ASD Difficulties building relationships appropriate to developmental level Difficulty adjusting behavior to context Difficulty with imaginative play Difficulty making friends or limited interest in people Typically developing D/HH Interested in people and able to develop ageappropriate relationships when communication is accessible Imaginative play follows typical developmental course (commensurate with language and nonverbal IQ) Flexible play May prefer to control conversation or play if having troubles following changes in conversation based on language level or in challenging listening environments (when using an auditory/oral approach) Deficits in Social/Communication Deficits in developing and maintaining appropriate relationships appropriate to the developmental level D/HH + ASD Reduced shared enjoyment Delayed acquisition of symbolic play skills inconsistent with nonverbal IQ Difficulty making and sustaining friendships even when communication is accessible Unusual social overtures toward others (e.g. backing into parents, grunting at peers, hitting peers to initiate contact) Play is rigid and unimaginative Restricted/Repetitive Patterns of Behavior Stereotyped or repetitive speech, motor movements, or use of objects ASD Typically developing D/HH Stereotyped repetitive Usually not speech (i.e., echolalia, demonstrated, repetitive language particularly in children use, idiosyncratic with well-established phrases) communication system Repetitive motor and average nonverbal movements IQ Repetitive use of Echolalia can occur as a objects typical developmental Difficulties with pattern, but should be for transitions a brief period of time You/I pronoun reversals can occur as part of typical development for children with cooccurring visual impairments Restricted/Repetitive Patterns of Behavior Stereotyped or repetitive speech, motor movements, or use of objects D/HH + ASD Echolalia in sign or spoken language Idiosyncratic gestures (e.g. persistent use of made up gesture, distinct from home sign, when formal sign taught/used) Palm rotation errors Difficulty with pronoun use (not using point gesture to indicate others, fingerspelling name instead of using pronoun/point, “you”/”I” confusion in auditory/verbal children)7 Rocking, twirling, flapping, spinning Highly repetitive play with objects (e.g. persistence in lining up toys with significant upset if disrupted) Restricted/Repetitive Patterns of Behavior Excessive adherence to routines ASD Verbal rituals Excessive resistance to change Typically developing D/HH Given an understanding/ communication, child will change routines, activities The resistance seen is typical for all children or due to comprehension issues May struggle with transitions if language level doesn’t yet support understanding first-then concept Restricted/Repetitive Patterns of Behavior Excessive adherence to routines D/HH + ASD May require parents/caretakers to say things in exactly the same way Resistant to change, transitions are difficult (these difficulties are beyond that anticipated by language level) Significant upset when routines are disrupted Restricted/Repetitive Patterns of Behavior Highly restricted, fixated interests that are abnormal in intensity or focus ASD Typically developing D/HH Preoccupation with a particular object or topic Highly unusual interest for child’s developmental age (i.e., ceiling fans) Hyper-or hypo Unusual sensory reactivity to sensory interests (visual input or unusual inspection, smelling interest in sensory objects), fascination aspects of with lights/spinning environment objects Indifference or oversensitivity to pain/heat/cold Usually not demonstrated or very brief; able to move to new toys, objects May have some atypical sensory responses-or hyper/hypo sensitivities, these are more typically differences with vestibular processing; less likely visual inspection or persistent tactile/olfactory exploration of objects Restricted/Repetitive Patterns of Behavior Highly restricted, fixated interests that are abnormal in intensity or focus Hyper-or hyporeactivity to sensory input or unusual interest in sensory aspects of environment D/HH + ASD Repeated play with toy or object (often rather than playing with a wide variety of toys) Play with toy for other than intended purpose Unusual interests of unusual intensity or for child’s developmental age (e.g., perseveration on street signs, ceiling fans, researching all presidents of the US at age 3) With some DHH children, may see limited response to amplification (seem to be more deaf than you would expect based on their audiogram or amplified responses) May show sensitivity to wearing amplification Hypo and hyper-sensitivities Sensory seeking behaviors (pushing head on floor in inverted “V” position, repeatedly watching blinds opening and closing, sniffing non-food objects before use) Unusual reactions to environment unlikely related to hearing loss (e.g., avoidance of Other Diagnostic Considerations Learning/ Communication: • Intellectual Disability • Communication Disorders Behavioral Conditions • ADHD • Anxiety disorder • Obsessive compulsive disorder • Sensory integration difficulties Medical Conditions • Tourette’s Syndrome • Epilepsy • Landau-Kleffner and other epileptiform language disorders(rare) • Peripheral vision cuts • Benign stereotypies Section 3 • Interventions used for children with ASD which can be applied/adapted for children who are D/HH Interventions for Dual Diagnosis • Evidence of effectiveness of interventions is lacking (mostly case studies) • It is reasonable to take interventions which have been successful for hearing children to modify/adapt for children who are deaf/HH Implications of Communication on Interventions for Dual Diagnosis • Communication needed: – joint attention, turn-taking, imitation, choice-making, play • Communication modality can be complex – Picture Exchange Communication System (PECS) – Technology/Augmentative Communication – Signs, gestures, spoken Communication considerations Multifaceted approach to language is warranted Language must be accessible to children who are D/HH Child’s means of accessing language (receptive language) may differ from most reliable means of using language (expressive language) Targeting core symptoms of ASD (responsiveness to CI may be ASD, not failure of CI; problems with ASL poor motor in ASD) Communication Considerations • Features of ASD may impact language acquisition and should be targeted as symptoms of ASD – Joint attention deficits – Reduced eye contact – Motor imitation • Not responding to sound may be a symptom of ASD rather than a failure of technology or the child’s hearing – ASD treatment helpful • Sensory sensitivities may lead to device resistance – Treat with OT and desensitization protocol with consultation from behavioral specialist • Use of Assistive/Augmentative Communication (AAC) Communication Strategies/Modalities Interventions for Dual Diagnosis: Social Communication • Parent Training – Fostering social communication skills, teaching parents about importance of communication & language access in general • Social Skills Groups • Social Stories • Who is the peer group? – Learning cultural norms for both hearing and Deaf worlds Review of Interventions for ASD (in general population) Warren et al, 2011, Pediatrics • 4120 studies; 34 met inclusion criteria – 1 rated good – 10 fair – 23 poor • Interventions thought to show improved outcomes in cognition, adaptive functioning & early educational attainment Categories of Effective Intervention (Warren et al., 2011, Pediatrics) • Lovaas-based & Early Intensive Behavioral Intervention (EIBI) – Discrete trial teaching (DTT) – Widely known in the public as Applied Behavioral Analysis (ABA) – Uses praise & reinforcers transfer to naturalized settings • Comprehensive Approaches - Children < 2 yr – Early Start Denver Model ABA techniques in a functional developmental framework, sensitive to developmental sequence, positive, affect-based relationship • 2 yrs enrolled – significant cognitive & language gains • Must be “implemented with fidelity” and supervision • Parent Training – Best at promoting social communication & language; less impact on child’s IQ Implementation of Interventions Children with ASD who are D/HH • Lovaas/Early Intensive Behavioral Intervention – Direct teaching (breaking down a task and building the skill). – Generalization of skills learned – Finding appropriate motivators, rewards • Comprehensive, developmental approaches – “What is ASD, what is hearing loss?” – Promoting interactions with typical peers – more challenges? – Begins early (12-18 mo.) – Delayed diagnosis of ASD in D/hh population may make this challenging? Section 4 • Improve family support and access to resources Focus Group: Parents Objective: To gain an understanding of the experience of families with children who have PHL with a co-existing ASD. • Recruited families from around the region based on children who had received a dual diagnosis through CCHMC. • Of the 16 families invited, five RSVP’d, but only three families attended (2 of 4 parents were fathers) Wiley, S, Gustafson, S, Rozniak, J. “Needs of Parents of Children who are Deaf/Hard of Hearing with Autism Spectrum Disorder" The Journal of Deaf Studies and Deaf Education 2014 Jan;19(1):40-9. Children of Participants Children varied in degree of hearing loss and in ranges of severity of ASD Characteristic Child 1 Child 2 Child 3 Type and Degree of HL Unilateral mild to moderate Profound bilateral Profound bilateral Age of HL identification 3 years 2 months by UNHS Birth due to Syndrome Type of Amplification Hearing Aid Bilateral CI Unilateral CI, no longer using Autism spectrum label PDD NOS Autism PDD NOS Age of Identification of ASD 6 years 4 years 6 years Children of Participants Characteristic Reminder Current Educational Placement Child 1 Child 2 Child 3 Unilateral, PDD-NOS Mainstream setting with IEP supports Profound bilateral, Autism Social Communication Classroom Profound bilateral, PDD-NOS Autism Classroom Home-based EI Home-based EI Early Educational Placements Special Needs Preschool Communication Mode Aural/Oral Autism specific strategies used Visual Schedules Social Stories School for the Deaf with manual approach in apraxia program Total Communication: writing, signing, spoken language Visual Schedules PECS Classroom for children with motor disabilities Special Needs Preschool Developmental Disabilities Classroom Signing Visual Schedules, PECS, Dynavox Topics of Interest • • • • Experiences during diagnosis Impact of dual-diagnosis on family Useful resources Wish-list Discussion Themes • • • • Diagnostic Experiences Family Impact Functional Skill Development Academic considerations Functional Skill Development • Functional skills are a priority – Struggle to balance development of social skills and academic performance – reported more interest in the development of their child’s social and functional skills “At some point, I’m going to look at him and say, it doesn’t matter to me you know your multiplication table, I can’t take you anywhere. I can’t take you to the grocery store.” • Access to social groups is a challenge – Accessible social groups based on geographic location and scheduling convenience are difficult to find within already busy schedules Academic Considerations • Parents were happy with services that were provided in school – Concerned about potential of cuts in funding • Limitations of Extended School Year – Need continuation of the academic school year’s structure on a year-round basis, particularly related to their child’s difficulties with changing schedules and reliance on structured teaching • Requested better training of professionals – Ensure that professionals working with their children are proficient in both PHL and ASD Useful resources • All families noted that schools were primary resources for information and support. – Important to have strong communication between school and home • Allows consistent follow-through for supporting their child’s development at home “It all depends on your teacher. We used to get materials to bring home that we could work on with her on vacations and breaks. Now we aren’t getting any of that.” Useful Resources • Visual schedules • Internet was a consistent resource used by all families to: – Learn more about strategies to help their children – Network with other families – Connect with professionals to provide guidance with problems “The internet has been a godsend, I couldn’t do anything without it.” Wish-list • Ability to observe their child’s out-patient clinical therapy. – E.g. video monitors – Thought to be helpful in allowing them to observe interventions to try at home with their child • Someone that they can call/email with questions. – Contact should have a knowledge base of both PHL and ASD Strategies to support families • • • • Do not delay raising concerns with families Families may not understand what is/is not attributable to hearing loss Start with strengths and discuss concerns in a kind, clear manner Help families recognize symptoms of ASD are broad: filter what does/does not apply to their child • Be able to help families identify resources for seeking diagnostic clarification and support • Connect with other families with children with similar strengths/needs Thoughts • Collaboration – Professionals with experience in ASD, specific subpopulation – OT, Behavior specialists • Creativity – Think from the perspective of the child – Adapt known strategies to meet all of a child’s needs • Peer exposure – Define peer group, may need a variety of peer groups for different skills How to families experience compare to those families with ASD or those families with children who are D/HH? • Having a child with ASD has been linked with elevated levels of parental stress • Families of children with the dual diagnosis have described challenges in accessing appropriate services for their child’s unique needs • Stress in families with children who are Deaf/HH with an ASD has not been reported in the literature Wiley S, Meinzen-Derr J, Hunter L, Hudock R, Murphy D, Bentley K, Williams T. Understanding the Needs of Families of Children who are Deaf/Hard of Hearing with an Autism Spectrum Disorder. Journal of the American Academy of Audiology 2017 (in press). Background: Stress in families of children who are Deaf/HH • In general, families felt positive about identifying a hearing loss at a young age • Pressures related to achieving based on a “time-table” • Families desire to avoid abnormal development and had greater dissatisfaction when it wasn’t clear how to best intervene for their child’s needs • Families desire family-to-family support as well as receiving family-centered practice Young, A and Tattersall, H. (2007) Journal of Deaf Studies and Deaf Education 12:2 209-220. McCracken, W, Young, A, Tattersall, H. (2008) Ear and Hearing 29;54–64. Background: Stress in families of children who are Deaf/HH • Using the Pediatric hearing impairment caregiver experience (PHICE), indicated parental stress changes over time • At young ages/soon after identification, higher levels of stress around healthcare • Older ages, higher stress around educational needs • Communication needs was a common stress across ages/duration since identification Meinzen-Derr, J, et al. International Journal of Pediatric Otorhinolaryngology 2008 72:1693-1703. Background: Stress in families of children with ASD • Parents of children with ASD experience large amounts of stress that may persist throughout a lifetime of caring for their child • Parents of children with ASD experience levels of stress that are higher than levels experienced by parents of other children • Stress may result from child characteristics such as behavior problems or indirect sources and outcomes related to this stress such as marital strain, or increased anxiety, depression, or social isolation Baker-Ericzen, MJ, et al (2005). Research & Practice for Persons with Severe Disabilities 30(4), 194-204. Dumas, J.E et al (1991). Exceptionality 2, 97-110. Konstantareas, MM, & Homatidis, S. (1989). Journal of Child Psychology and Psychiatry, 30(3), 459-470. Background • The prevalence rate of autism spectrum disorders (ASD) in children who are Deaf/HH is approximately 4-7%, a much higher rate than the general population • There has been minimal research on this group of children and families Szymanski, CA, et al (2012). Journal of Autism Developmental Disorder, 42, 2027-2037. Jure, R et al (1991). Developmental Medicine and Child Neurology, 33, 1062–72. Background Deaf/HH and ASD • Beals’ (one family) experience with EI – feeling pulled between communication modalities (oral vs sign) with deaf professionals – lack of focus and concrete guidance from ASD professionals • In a targeted interview of 4 families, – families felt shuffled between providers (deaf/HH and ASD), – needed to focus more on behavioral needs – experienced a lack of sign language environment within ASD programming Beals, K. (2004) Infants and Young Children, 17, 284-290. Myck-Wayne, J, et al (2011) Am Ann Deaf, 156(4), 379-390. Wiley, S et al The Journal of Deaf Studies and Deaf Education 2014 Jan;19(1):40-9. Study Objective • To compare the experiences of stress of 3 groups of families: – Families of children who are Deaf/HH – Families of children with an ASD – Families of children who are Deaf/HH with an ASD Methods • Participants were identified through clinical and research registries • 24 families within each category were mailed packets of questionnaires focused on demographic characteristics and parenting stress measures • The study was approved by the Institutional Review Board Questionnaires • Qualitative questionnaire about supports were designed based on prior questions from a focus group Stress Questionnaires specific to Deaf/HH: • The Pediatric Hearing Impairment; Caregiver Experience (PHICE) was developed and validated by a pediatric otolaryngology fellow at CCHMC • Includes domains of communication, education, emotional well being, equipment, financial, healthcare, social, and support Meinzen-Derr, J et al. International Journal of Pediatric Otorhinolaryngology 2008 72:1693-1703. Questionnaires Broad-based parental stress questionnaire • The Parenting Stress Index-4th Edition (PSI) • Includes Domains of Parent Characteristics and Child Characteristics. • Within the Parent Domain there are seven subscales: Depression, Attachment, Restriction of Role, Sense of Competence, Social Isolation, Relationship with Spouse, and Parent Health. • Within the Child Domain, there are six subscales: Adaptability, Acceptability, Demandingness, Mood, Distractibility/Hyperactivity, and Reinforces Parent Abidin, R. R. (1995). Parenting Stress Index: Professional manual. Odessa: Psychological Assessment Resources, Inc. Child Age at Study (range) Number of Children in Family (median/range) Level of Parent Education High School Some College Completed College Graduate School Dual Diagnosis (n=6) Deaf/HH Alone (n=4) ASD Alone (n=3) 7-20 yrs 11-17 yrs 9-12 yrs 2 (1-4) 3 (2-4) 1 (1-2) 0 1 3 2 1 1 0 2 0 0 2 1 1 1 0 1 2 1 0 1 0 0 2 1 0 0 2 0 0 1 Household Income <20,000 20,000-29,000 30,000-39,000 50,000-59,000 70-79,000 >80,000 Child Age at Study (range) Degree of Hearing Loss Unilateral/Mild Moderate-Severe Profound Dual Diagnosis (n=6) Deaf/HH Alone (n=4) ASD Alone (n=3) 7-20 yrs 11-17 yrs 9-12 yrs N/A 2 0 4 1 1 2 Oral Oral/Signing Oral/Behavior Signing/Behavior 2 1 0 2 4 0 0 0 2 0 1 0 Educational Setting Fully Mainstreamed Partially Mainstreamed Self-Contained 1 4 1 4 0 0 1 2 0 Communication Mode Results: PSI • Compared to the Deaf/HH only group, the dual diagnosis group had higher median Total Stress (41.5 vs 58.5, p=0.02) and higher Child Domain scores (43 vs 60, p=0.02). • The dual diagnosis group was similar to the ASD only group in reporting stress • Total scores were above the 85th percentile in 38% of the families (All were dual diagnosis or ASD respondents only) • The deaf/HH only group did not have clinically elevated stress scores in any domains PSI Child Domain Parent Domain Results: PHICE • Families of children with the dual diagnosis had higher median scores on the PHICE than families of children who were solely Deaf/HH (total score 150.5 vs 179.5, p=0.08) • Only two families reported high levels of stress in the communication domain, 1 dual diagnosis group and 1 in deaf/HH In the Dual Diagnosis Group: • 50% noted high levels of stress about their child’s future • 33% worried about not doing enough for their child and not attending to other family needs • 33% indicated high levels of stress related to childcare Deaf/HH Only Qualitative Questionnaire How has the diagnosis in your child impacted your family? • The diagnosis was heartbreaking • Major reorganization of the family, needed to understand navigating therapy, billing, sign language • Diagnosis was difficult for some members of our family • We needed a safety plan, including changing where our child sat in the car Where do you find support • Family (x2) • School (x2) • Friends • Internet • Books Deaf/HH Only Qualitative Questionnaire How has the diagnosis impacted communication decisions and strategies? • We sent our child to an oral school • The hearing loss turns a non-decision situation into a situation. We chose a cochlear implant route. • Our child has troubles in loud settings (i.e. cafeteria), making friends What resources/supports have you found helpful? • Early Intervention supports (x2) • FM system • Bureau of Children of Medical Handicaps (State Title V program) Deaf/HH Only Qualitative Questionnaire What is on your wishlist? • I have gotten my wish, for him to talk • Transition successfully to high school and increase his circle of friends • Increased ability to socialize, make friends • Hear sounds for spelling words • Waterproof Hearing Aid • Better understanding of school system/professionals related to HL ASD Only Qualitative Questionnaire How has the diagnosis in your child impacted your family? • We don’t take things for granted • Increased reliance on routines, impact of therapy appointments • Change in relationship with spouse Where do you find support • Family (x2) • Therapists (x2) • Friends • Reading ASD Only Qualitative Questionnaire What resources/supports have you found helpful? • Speech and OT • Using picture schedules • Accessing biomedical/DAN supports What is on your wishlist? • For people not to judge and be more understanding • For my child to become more social, social skills, independence • For my child to become independent and happy Deaf/HH + ASD: Qualitative Questionnaire How has the diagnosis in your child impacted your family? • Physical and emotional toll • Challenges in getting school to recognize both issues • Parental feeling of social isolation from friends • Frustration with lack of progress • The family moved to be closer to services for child Where do you find support • Family (x4) • Friends (x3) • School • Challenger league Deaf/HH + ASD Qualitative Questionnaire How has the diagnosis impacted communication decisions and strategies? • Signs (child with cochlear implant) • Always looking for communication strategy (i.e. I-pad) • My child doesn’t remember much that has been taught • The dual diagnosis complicates sign language, we try all tools and follow his lead What resources/supports have you found helpful? • School (x2) • Trial and Error • I don’t know anyone else with a child with a dual diagnosis • ARC/Developmental Disability Services Deaf/HH + ASD Qualitative Questionnaire What is on your wishlist? • Acceptance, tolerance by others • Independence, healthy, happy, have a job • To be able to communicate and function in a regular class • Finding an educational setting which can meet all of his needs • Finding a cause of the issue and fixing it Results: Qualitative Questionnaire Common Themes: • Families from all groups described accessing supports from families, friends, therapists, and schools • Families from all groups also wanted their child to achieve independence and happiness Unique Themes: • Families of children with the dual diagnosis tended to describe more challenges with feelings of isolation, broader ramifications, and communication needs • Families of children with the dual diagnosis and ASD only described a desire for broader acceptance and understanding of their child’s needs by others Conclusions • Families of children with the dual diagnosis of Deaf/HH and ASD report higher levels of overall stress than families of children with Deaf/HH alone • A common concern among all families related to worries about their child’s future • Although limited by sample size (response rate of 18%), this exploratory study suggests a need to assess stress and more effectively support families with children with a dual diagnosis Family Resources • Seminars in Speech/Language special edition devoted to ASD among children who are D/HH (November, 2014, vol 4) – https://www.thieme-connect.com/products/ejournals/issue/10.1055/s-004-27930 • Gallaudet Odyssey special editions re: deafness/autism – www.gallaudet.edu/documents/clerc/odyssey-2008-v9i1.pdf and www.gallaudet.edu/Images/Clerc/.../Odyssey_SPR_2012_Szymanski.pdf • Deafness and Family Communication Center of the Department of Child and Adolescent Psychiatry- Children’s Hospital of Philadelphia http://www.raisingdeafkids.org/special/autism/ • Colorado Hands and Voices- Deaf Plus http://www.cohandsandvoices.org/plus/index.html - Autism Society http://www.autism-society.org/ Helpful Readings • Odyssey: New Directions in Deaf Education: Autism Issue • Spring/Summer 2008; Volume 9: Issue 1 • http://www.gallaudet.edu/documents/clerc/odyssey-2008v9i1.pdf Literature Review: General Articles • Mandell et al Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics 2005:116:1480-1486. • Jure, R, Rapin, I and Tuchman, R Hearing-impaired autistic children. Dev Med Child Neurol 1991 33(12):1062-72. • Rosenhall et al Autism and Hearing Loss. J Autism Dev Disord 1999 29(5):349-57. • Worley, J, Matson, J, Kozlowski, A. “The effects of hearing impairment on symptoms of autism in toddlers” Developmental Neurorehabilitation, 2011 (14) 171–176. • Szymanski, C, Brice, P, Lam, K, Gotto, S. Deaf Children with Autism Spectrum Disorders J Autism Dev Disord 2012 e-pub ahead of print Jan Literature Review • Gense and Gense: Autism and Deafness Workshop OCALLI 2002, 2005, 2007 • Guarinello et al Deafness and Attention in Deaf Children. American Annals of the Deaf 2007: 151:5:499-507. • Peterson, C, Wellman, H, Liu, D. “Steps in Theory-of-Mind Development for Children With Deafness or Autism” Child Development 2005 (76) 502-517. Literature Review: Assessment • Johnson, K, DesJardin, J, Barker, D, Quittner, A, Winter, M. “Assessing Joint Attention and Symbolic Play in Children With Cochlear Implants and Multiple Disabilities: Two Case Studies” Otology and Neurotology 2008 (29) 246-250. • Roper, et. al Co-occurrence of autism and deafness: diagnostic considerations. Autism 2003 7(3): 245-253. • Hoevenaars-van den Boom, MAA, Antonissen, ACFM, Knoors, H, Vervloed, MPJ “Differentiating characteristics of deafblindness and autism in people with congenital deafblindness and profound intellectual disability” Journal of Intellectual Disabilities Research 2009 (53) 548-558. Literature Review: Intervention Strategies • Garcia, R and Turk J “The Applicability of Webster-Stratton Parenting Programmes to Deaf Children with Emotional and Behavioural Problems, and Autism, and Their Families: Annotation and Case Report of a Child with Autistic Spectrum Disorder” Clinical Child Psychology and Psychiatry 2007 (12) 125-136. • Malandraki, G, Okalidou, A “The Application of PECS in a Deaf Child With Autism : A Case Study” Focus Autism Other Dev Disabl 2007 22: 23. Literature Review: Outcomes Studies • Donaldson, et. al. Measuring progress in children with autism spectrum disorder who have cochlear implants. Archives of Otolaryngology Head and Neck Surgery 2004:130:666-671. Literature Review • Gal, E, Dyck, M, Passmore, A. “Relationships Between Stereotyped Movements and Sensory Processing Disorders in Children With and Without Developmental or Sensory Disorders” American Journal of Occupational Therapy 2010 (64) 453-461. • Maljaars, JPW, Noens, ILJ, Scholte, EM, Verpoorten, RAW, vanBerckelaer-Onnes, IA. “Visual local and global processing in low-functioning deaf individuals with and without autism spectrum disorder” Journal of Intellectual Disability Research 2011 (55) 95-105. Literature Review: Family Perspectives • Beals, K “Early Intervention in Deafness and Autism: One Family’s Experiences, Reflections, Recommendations Infants and Young Children 2004 (17) 284-290. • Myck-Wayne, J, Robingon, S, Henson, E. Serving and Supporting Young Children with a Dual Diagnosis of Hearing Loss and Autism: The Stories of 4 Families. American Annals of the Deaf 2011 156:4, 379-390. Intellectual Disability • Delays in problem-solving AND adaptive functioning Definition • Limitation in cognitive AND adaptive functioning. • At or below 2 standard deviations from the mean. • Classifications – Mild 50-70 – Moderate 35-49 – Severe 20-34 – Profound <20 Cognitive Functioning • Assessed via IQ testing. – Stanford Binet (not suggested for children who are D/HH) – Weschler Intelligence Scale for Children • Performance usually stabilizes around 6 years of age. • IQ tests were initially developed to predict who would do well in school. • IQ tests have performance (visual-perceptual) tasks and verbal (language based) tasks. Etiology • Known in 43-70% of children with severe intellectual disability • Known in 20-24% of children with mild intellectual disability Etiology Mild ID Severe ID Prenatal 7-23% 25-55% Perinatal 4-18% 10-15% Postnatal 2-4% 7-10% Chromosomal 4-8% 30% Co-existing Conditions: General population data Condition Mild ID Severe ID Epilepsy 4-7% 20-32% Cerebral Palsy 6-8% 30% Sensory deficits 2% 11% Autism Spectrum Disorder 9-20% in all ID categories ID in 40-70% of children with ASD Considerations for children who are D/HH • Non-Verbal IQ in general more appropriate – Leiter International Performance Scale – Test of Nonverbal Intelligence – Performance domains on the Wechsler Intelligence Scales • Verbal IQ is important • Patterns can vary (high VIQ, low NVIQ) Sensory Integration Dysfunction Definition • Sensory Integration is the organization of sensation from the body and the environment for use. Types of Sensory Issues • Sensory Overload (hyper-reactive) – high arousal, inability to focus attention, negative affect, impulsive or defensive action • Hyporeaction – manage input by withdrawing, easily over-looked • Sensory Defensiveness – hyper-vigilant to avoid sensory overload Sensory Threshold Point at which the summed sensory input activates the CNS High threshold (hyporeactivity) low threshold (hyperreactivity) Sensory Integration Disorder • A way of conceptualizing certain behaviors. • Body takes in all of the sensations (vision, hearing, tactile, smell, taste), sends them up to the brain, integrates those sensations and sends out a signal to respond to the input. • Tactile sensitivities • Auditory sensitivities • Vestibular processing Diagnosis • Sensory profile questionnaire • Look at patterns of sensory issues (movement, vestibular, touch, auditory stimuli, visual stimuli, taste/texture) • Important to focus treatment on the pattern of issues (one treatment protocol will not help every child, must individualize programming) Treatment • Helping parents/professionals understand the child’s responses • Modify the environment for better “fit” • Sensory diet • Child-directed • Make activities purposeful SI and CI • MAPping considerations – CI 2005 poster on children with sensory integration issues (not necessarily with autism) seemed to respond more appropriately to lower thresholds. – Re-MAPping improved their auditory outcomes. • Therapy accommodations – Co-treat with OT – Sensory diet during therapy Sensory vs Behavior? • Sensory integration has many overlapping features with – ADHD – Anxiety/OCD – Autism Spectrum Disorder • Where does sensory end and behavior begin? • (behavior slides in communication section)