There s a quiet revolution going on in autism
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- Violet Leonard
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1 Uniquely Human: A Different Way of Seeing Autism Barry M. Prizant, Ph.D, CCC-SLP 1 Uniquely Human: A Different Way of Seeing Autism Barry M. Prizant, Ph.D., CCC-SLP Adjunct Professor Artists and Scientists as Partners Brown University, Providence, RI Director, Childhood Communication Services, Cranston, RI There s a quiet revolution going on in autism (that s not so quiet anymore!) Sources for Presentation My Four Worlds of Autism Caregiving world 6 years as residential counselor, 20 years of parent retreat weekend, longitudinal relationships with families Academic/research world SLP in Comm. Disorders and in Psychiatry (Brown Medical School), developer of evidence-based approach (SCERTS) Service Provision world SLP in schools, hospitals and school consultant nationally/internationally First person world of autism sharing time, learning from and collaborating with autistic people
2 Uniquely Human: A Different Way of Seeing Autism Barry M. Prizant, Ph.D, CCC-SLP 2 Why Uniquely Human? Behavior in autism Has been misunderstood/dehumanized Deep interests and strengths referred to as obsessive solution? -reduce or eliminate Behavior judged as inappropriate without asking WHY? Focus on Three Issues 1. Understanding the behavior of people with ASD - their challenges and experience 2. Debunking the belief that ASD is a tragedy for the child and family 3. Debunking the belief that ASD is only within the child or person De-humanizing Autistic People Lovaas Concept of Autism (1974) Autistic children are severely disturbed. They show no signs of warmth toward others. You start pretty much from scratch when you work with an autistic child. You have a person in the physical sense they have hair, a nose and a mouth but they are not people in the psychological sense (Psychology Today, 1974)
3 Uniquely Human: A Different Way of Seeing Autism Barry M. Prizant, Ph.D, CCC-SLP 3 Common descriptions of the behavior of persons with autism Non-compliant/stubborn Manipulative Rude Bizarre/Avoidant Deviant/Challenging Obsessive/Self-stimulatory Non-functional Meaningless/Irrelevant Perseverative Non-communicative Phrases that Blame the Child It s a control issue He s so aggressive Non-compliant behavior He s just stimming She s being manipulative He understands everything he s just trying to get out of She doesn t need supports Self-stims = Self-regulation - Stephen Shore, Ed.D.
4 Uniquely Human: A Different Way of Seeing Autism Barry M. Prizant, Ph.D, CCC-SLP 4 I love when science catches up to the autistic experience. - Judy Endow Autistic Writer, Social Worker and Consultant The notion of autism as a tragedy Autism is a lost, hellish world D. Kirby, from his book, Evidence of Harm Robert Kennedy Jr. Quote (4/7/15) "I employed the term holocaust as I struggled to find an expression to convey the catastrophic tragedy of autism which has now destroyed the lives of over 20 million children and shattered their families." vs. the notion of autism as a tragedy Some call it autism, others call it despair and sorrow. I happen to call it hope, beauty and fascination. - Mother of Michael, 9 years old, from her blog Asperger s is not a disease. It s a way of being. There is no cure, nor is there a need for one. There is, however, a need for knowledge - John Elder Robison, adult with AS The people who have been most helpful to us are those who do not take away our hope. We have learned to keep away from the doom and gloom crowd. - Father of 8 year old boy
5 Uniquely Human: A Different Way of Seeing Autism Barry M. Prizant, Ph.D, CCC-SLP 5 What We ve Learned from Experience and Research There is no such thing as autistic behavior - it is all human behavior. Behavioral patterns best understood as reactions to confusion, stress, anxiety, or even great excitement and joy - are often attempts to communicate, regulate one s emotions and cope We need to ask WHY? *************************************** Passions are a well-spring of opportunity and offer many possibilities Actions that schools can take Ø Disability and autism awareness programs Ø Autistic students talking about autism, and providing input for their school programming Ø Parents/family members talking with students and staff Ø Autistic adults consulting to schools Actions that schools can take Ø Celebrate success and show off abilities of students with ASD Ø Talk and teach about famous, accomplished people with ASD (Temple Grandin, A. Einstein, Daryl Hannah) Ø Share positive stories from the media Ø Invite parents of graduates to share their success stories Ø Invite autistic people to share their stories
6 Uniquely Human: A Different Way of Seeing Autism Barry M. Prizant, Ph.D, CCC-SLP 6 Lisa Jo Rudy Myth:Autism is only within the child the disease model of autism Progress focuses on recovery - changing the behavior of the person so that DSM criteria are no longer met Goal is to approximate what some call normal behavior (but normal is a setting on a dryer) De-Pathologizing Autism How we interpret and understand behavior Autistic Behavior è Human Behavior Obsessions è Enthusiasms, passions Insensitive è Hypersensitive Not interested in è Challenges in relationships understanding and trusting others ASD as Tragedy è ASD as Difference
7 Uniquely Human: A Different Way of Seeing Autism Barry M. Prizant, Ph.D, CCC-SLP 7 De-Pathologizing Autism How we provide education and support Control behavior è Train Compliance è Deficit checklist è Build self-determination Enhance initiation and self expression ID and build strengths Train rote skills è Authentic Progress Change people è with autism Change our behavior, attitudes and supports What we ve learned Autism is a shared HUMAN Experience This shared experience presents 1. Challenges 2. Tremendous potential for growth for the individual, families, school communities and society Autism is a SHARED Human Experience Becomes part of the fabric of life for all involved educators, families and those with autism Development is life-span - no ceiling on potential for growth A person with autism is more a product of their life s experiences than the autism Michael John Carley
8 Uniquely Human: A Different Way of Seeing Autism Barry M. Prizant, Ph.D, CCC-SLP 8 Autism is a SHARED Human Experience Becomes part of the fabric of life for all involved Educators Service Providers Families Those with Autism Why a Uniquely Human Perspective? A deeper understanding builds trust with people with ASD and families Makes our communities more humane and caring Makes us all better people
9 Uniquely Human: A Different Way of Seeing Autism Barry M. Prizant, Ph.D, CCC-SLP 9 For more information and resources: Uniquely Human: A Different Way of Seeing Autism (Simon & Schuster, 2015) Uniquely Human On-Line Course
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After finishing this inservice, you will be able to:
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