UCC EI Underlying Characteristics Checklist Early Intervention 11/19/09. Starting Points. Prevalence of ASD. Starting Points

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1 Starting Points Underlying Characteristics Checklist EI for ages 0 to 5: Development and Uses Ruth Aspy, Ph.D., Barry G. Grossman, Ph.D., Kathleen Quill, Ed.D., and Nicole Brin, M.A., CCC-SLP Autism spectrum disorders (ASDs) are not rare. They are more prevalent in children than cancer, diabetes, spina bifida, and Down syndrome (Filipek, et al., 1999, p.440 Filipek, P.A., et al. (1999). The screening and diagnosis of autistic spectrum disorders. Journal of Autism and Developmental Disorders, 29, in 91 (US estimate)* Prevalence of ASD Boys more often than girls, typical ratio is 4 or 5:1 Starting Points A growing body of research suggests that autism can be accurately diagnosed by 2 years old American Academy of Pediatrics guidelines oppose a wait and see approach. Let s Just Wait and See Bishop, S.L., Luyster, R., Richler, J., & Lord, C. (2008). Diagnostic Assessment. In K. Chawarska, A. Klin, & F.R. Volkmar (Eds.), Autism Spectrum Disorders in Infants and Toddlers: Diagnosis, Assessment, and Treatment (pp ). New York, NY: Guilford Press. *(2009) Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorders in Children in the US. Pediatrics. Johnson, C.P., Myers, S.M., Council on Children with Disabilities (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics, 120(5) Screening for ASDs in Toddlers CHAT MCHAT FYI STAT UCC EI Underlying Characteristics Checklist Early Intervention Delay in identification = Delay in intervention 1

2 Early Intervention Very early intervention may be viewed as a mechanism to prevent the full unfolding of symptoms of ASD by minimizing the associated secondary abnormalities in brain development. Need for the UCC-EI In most early childhood programs, children are evaluated and served based on delays Limitations: Atypicalities may not be detected through a developmental checklist (e.g., absence of phrase speech would be evident; however, presence of echolalia would not). Not all atypicalities are delays (e.g., hyperlexia) but may be VERY meaningful. - Wetherby & Woods, 2008, p. 173 Need for the UCC-EI Children who are later identified with Asperger s/hfa are often not identified/served through early intervention Few instruments available to identify ASD in children at 18 months or younger, yet the standard is that screening should occur at that time Need a way to more appropriately serve children whose diagnostic picture is still unclear Why UCC-EI The relationship between characteristics of autism and behavioral challenges is clear in children, adolescents and adults But we must take into account developmental norms when thinking about the young child The range of typical is extremely broad at ages 0-3 The range of typical is very broad at ages 3-5 Developmental Skills Behavioral concerns of parents and others Working Assumption We must take into account: Child s chronological age Child s developmental skills The child s temperament The culture of the family and parenting style for program planning Developmental Norms The boundary between social norms and social differences is hard to quantify, especially from 0-3 years Solitary Play, Social Play, Response to and expression of emotions Communication norms and communication differences are somewhat easier to quantify in young children Non-verbal means of communication (joint attention, gestures) Language development 2

3 Behavior The relationship between temperament and behavior Common question: Does the behavior occur because he/she is being a typical 2-3 year old OR Is the behavior related to autism? Origins: The Underlying Characteristics Checklist Tool for designing interventions for individuals with ASD The Ziggurat Model Characteristics Social Communication Repetitive Patterns Associated Features Sensory Motor Cognitive Emotional Vulnerability Medical and Biological Factors Interventions 4 Steps to Designing a Comprehensive Intervention Plan Characteristics Design Implement Underlying Characteristics Checklist Helps you to see the autism Provides a snapshot of how autism is expressed for an individual A descriptive instrument Can be completed by a team Provides a tool for assessing progress/ change 3

4 Social The UCC Areas Restricted Patterns of Behavior, Interests, and Activities Communication Sensory Differences Cognitive Differences Motor Differences Emotional Vulnerability Known Medical or other Biological Factors UCC-HF for HFA and AS UCC-CL for Autistic Disorder UCC Format Individual Strengths and Skills Inventory Social Behavior, Interests, and Activities Communication Sensory Cognitive Motor Emotional Biological Social UCC-CL [3] Shows little interest in or response to praise [8] Has difficulty imitating the actions or words of others Social - ISSI Engages in turn taking activity with parents Plays near peers in classroom Beginning to return social smile w/ parents 4

5 Classic Autism UCC-HF or UCC-CL UCC-HF Average Skills HFA/AS Characteristics of ASD in Infants Example: Social interest and attention Diminished social attention by 12 mos Poor eye contact Decreased reaction to attempts to engage in play or interaction Less orienting, smiling and vocalizing to people UCC-CL Webb & Jones (2009). Early identification of autism: Early characteristics, onset of symptoms, and diagnostic stability Infants and Young Children, 22(2), Interventions for Infants and Toddlers Interventions that are individualized and targeted to specific skills in children and parents characterize efficacious infant/toddler interventions. UCC to Objectives UCC Item Has excessive difficulty transitioning from a preferred activity Objective Given a reinforcer, transition from a preferred activity 95% of the time Zwaigenbaum, et al (2009) p UCC to Objectives UCC Item Has difficulty imitating simple movements and sounds Objective Plays pat-a-cake or other simple imitation game/activity with two familiar adults 8 out of 10 attempts. Initial Development of the UCC-EI Expert review and consultation 5

6 Initial Development of Items Kathleen Quill, Ed.D. reviewed items from the UCC-Classic Modified items to be more developmentally appropriate Suggested items that were not appropriate for this group to eliminate Created new items Stage Two: UCC EI Development Kansas Workgroup Team of infant and early childhood experts Kansas Workgroup Nine experts in early childhood development and intervention Discussed the need for a UCC for young children Reviewed current UCC-CL and revisions suggested by Kathleen Quill, Ed.D. Revised items (based on both item sets) and created new items Lona Foust Kansas Workgroup Sarah Hoffmeier Kelly Frantz Vera Stroup-Rentier Peggy Miksch Phoebe Rinkel Lee Price Louann Rinner Lee Stickle Questions for Kansas Group What is your target age range? What is the youngest age for which you envision requiring this instrument? Summary of responses Birth to five Questions for Kansas Group How young do you feel the current version of the UCC-CL is useful without requiring significant re-interpretation of items? Summary of responses Some items apply to 36 months 6

7 Questions for Kansas Group Would an ECI interventionist have use for a UCC to augment the current developmental benchmark approach? Summary of responses Yes. The UCC digs deeper to find root cause for parents and practitioners. Richer detail at initial assessment. Systematic way to look at outcomes and strategies Framework for discussion Further Revision Revised UCC-EI was provided to experts in autism and development for additional input Teachers Early Childhood and Autism Administrators Speech Language Pathologists Psychologists Occupational Therapists Autism Consultants/Behavior Consultants Ruth Aspy, Ph.D. The Ziggurat Group aspy@texasautism.com Barry G. Grossman, Ph.D. The Ziggurat Group grossman@texasautism.com Kathleen A. Quill, Ed.D. Nicole Brin, M.A., CCC-SLP Autism Institute The Ziggurat Group kathyquill@autisminstitute.net brin@texasautism.com 7