Uniquely Human: A Different Way of Seeing Au8sm

Transcription

1 Uniquely Human Barry M. Prizant, Ph.D., CCC-SLP 1 Uniquely Human: A Different Way of Seeing Au8sm Barry M. Prizant, Ph.D., CCC-SLP Director, Childhood Communica?on Services Adjunct Professor Brown University, Providence, RI Why Uniquely Human? Behavior in au8sm misunderstood/ dehumanized Deep interests and strengths -referred to as obsessive - reduce or eliminate Behavior judged as inappropriate without asking WHY? Why Uniquely Human? Family experience of ASD onen described as a tragedy Behavioral perspec8ve dominates - also need a developmental, person-centered perspec8ve More helpful, produc8ve to remove lens of pathology

2 Uniquely Human Barry M. Prizant, Ph.D., CCC-SLP 2 Focus on Four Issues 1. understand the behavior of students with ASD - challenges and experience 2. understand the experience of parents - challenges and wins 3. debunk belief that ASD a tragedy for the child and family 4. debunk belief that ASD is only within the child ASD is a shared human experience This shared experience presents - challenges for the student and others, and - the poten8al for growth - for all students and - the school community Common descrip8ons of behavior in au8sm General descrip8ons: non-compliant, stubborn, manipula8ve, controlling, rude Specific behaviors: as bizarre, deviant, aberrant, challenging, obsessive, selfs8mulatory and non-func8onal Speech and language referred to as persevera8ve, meaningless parro8ng, irrelevant, repe88ve, non-communica8ve

3 Uniquely Human Barry M. Prizant, Ph.D., CCC-SLP 3 Consequences: Misunderstanding behavior in ASD Li\le need to ask WHY?, or to support and empathize Simply categorize as desirable or undesirable Person with ASD needs to change Reflec8ve prac8ce not a priority for service providers Higher likelihood of bullying if other students don t understand What we ve learned from experience and research - There is no such thing as au8s8c behavior - it is all human behavior. - Behavioral pa\erns best understood as reac8ons to confusion, stress, anxiety - are onen a\empts to communicate and cope. We need to ask WHY? Steps to increase understanding and be\er serve students Build Understanding need to reframe our understanding of echolalia, inflexible, controlling behavior, obsessive interests Respond with compassion Ask why a student does what we observe, try to understand his/her perspec8ve Express Apprecia8on Given the neurologically based challenges (social, sensory, etc), let s look at what is going right and appreciate how hard it may be for a student Provide Support Err on side of comprehensive interpersonal and learning support

4 Uniquely Human Barry M. Prizant, Ph.D., CCC-SLP 4 Ac8ons that schools can take Disability and au8sm awareness programs Students with ASD talking about their au8sm Parents who feel comfortable talking to students and staff Adults with ASD consul8ng to schools Parents of children and persons with ASD are onen misunderstood Descrip8ons of parents: Challenging, aggressive, non-compliant, unrealis8c, disengaged, overly protec8ve. Consequences: Misunderstanding of parental responses/reac8ons Nega8vely impacts collabora8on Professionals may not listen well Judgmental aftudes prevail Dispropor8onate focus on problems rather than successes with parents Li8ga8on more likely

5 Uniquely Human Barry M. Prizant, Ph.D., CCC-SLP 5 What we ve learned from experience, research, and from parents: They are onen doing the best they can juggling a million balls They too onen feel judged If they don t follow through, they may not understand how to, don t have the 8me or are dealing with other issues in the life of the family Steps to increase understanding and be\er serve families Build Understanding stress of uncertainty, try to understand where the family is in their journey Respond with compassion how parents must feel Validate feelings, try to understand their perspec8ve. They might doing the best they can for their child, all the juggling, reac8ons in public, for some, chronic anxiety Express Apprecia8on Given the neurologically based challenges (social, sensory, etc), look at what is going right in the family and appreciate how hard it may be appreciate what they do for their children and families Provide Support Listen, show respect, help them to priori8ze what is most important, validate their intui8ons about what is best for their child. How can I help? What s most important to you for us to work on? Ac8ons that schools can take Staff training in family-centered prac8ce and communica8on Staff with exper8se in family systems and support Support parent advisory commi\ees Go the extra mile Special supports for families e.g., aner-school coverage for parents night out

6 Uniquely Human Barry M. Prizant, Ph.D., CCC-SLP 6 Myth - ASD is nothing more than a tragedy for the child and family Build Understanding stress of uncertainty, try to understand where the family is in their journey Respond with compassion how parents must feel Validate feelings, try to understand their perspec8ve. They might doing the best they can for their child, all the juggling, reac8ons in public, for some, chronic anxiety Express Apprecia8on Given the neurologically based challenges (social, sensory, etc), look at what is going right in the family and appreciate how hard it may be appreciate what they do for their children and families Provide Support Listen, show respect, help them to priori8ze what is most important, validate their intui8ons about what is best for their child. How can I help? What s most important to you for us to work on? The no8on of au8sm as a tragedy Au8sm is a lost, hellish world 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 au8sm which has now destroyed the lives of over 20 million children and sha\ered their families." vs. the no8on of au8sm as a tragedy Quotes from people with ASD and parents Welcome to our li\le corner of the world. Some call it au8sm, others call it despair and sorrow. I happen to call it hope, beauty and fascina8on. - 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 and adapta8on on the part of Aspergian kids and their families and friends. - 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

7 Uniquely Human Barry M. Prizant, Ph.D., CCC-SLP 7 Consequences: Au8sm is a Tragedy Parents are pi8ed, their ac8ons judged Professionals feel they have to rescue the child and family - they have all the answers Professionals may not know how to talk about ASD with balance, a sense of humor (when appropriate), the cup half-full. Professionals may believe that primary concern is the child with ASD when there may other family issues to focus on. Steps to refute Au8sm is a tragedy belief Build Understanding Professionals and the media convey this posi8on, but parents crave hearing the posi8ves, as do students. Need to shin to a more balanced perspec8ve. Respond with Compassion - Understand how it feels to hear challenges, parents may feel they are being blamed (even if not true), or feel that hope is being taken away Express Apprecia8on support parents by crea8ng posi8ve images of their child, and celebrate successes to build trust Provide Support highlight a student s strengths as well as challenges to provide a more realis8c, balanced perspec8ve Ac8ons that schools can take Celebrate success and show off abili8es of students with ASD Talk about famous, accomplished people with ASD (Temple Grandin, Albert Einstein, Alexis Wineman, America s choice for Ms. America) Share posi8ve stories from the media Invite parents of school graduates share their success stories

8 Uniquely Human Barry M. Prizant, Ph.D., CCC-SLP 8 Myth - ASD is only within the child the disease model of ASD Progress is all about recovery - changing the behavior of the person so that diagnos8c criteria are no longer met Goal is to approximate what some call normal (but normal is a sefng on a dryer ), typical, etc. Consequences: ASD is only within the child We set goals to change students, not for us to reflect on and change what we do. If a student does not make progress, it is either his or her fault, or the parent s fault, because aner all, we are following the program We provide limited support. The burden is on students with ASD to change, or the child is just so impaired that there is li\le poten8al for growth. There is a Window of Opportunity that will close due to misinterpreta8on of the concept of neuroplas8city. What we ve learned - ASD is a shared Human Experience (Transac8onal model) Becomes part of the fabric of life for all involved educators, families and those with ASD Development is life-span - no ceiling on poten8al for growth. A person with ASD is more a product of their life s experiences than the ASD Michael John Carley

9 Uniquely Human Barry M. Prizant, Ph.D., CCC-SLP 9 Steps to understand au8sm as a Shared Human Experience Build Understanding Reflect on how au8sm is influencing your life - include both posi8ve and challenging influences Respond with Compassion Imagine how parents, family members and the person with ASD feels when challenged or frustrated Express Apprecia8on When we celebrate successes it should be a celebra8on for all, share challenges openly and honestly, without blame Provide Support Have high expecta8ons for people with au8sm, but with appropriate, and when necessary, high levels of support - Ros Blackburn Ac8ons that schools can take Communicate and model that the student is a valued member of the school community Focus on the behavior and aftudes of all staff, not just a focus on the student Understand the posi8ve impact of a student on other students and the community Accept the obliga8on for changes on our part, not just the student or parents Meaningful Outcomes : Not simply changes in the student, but in the whole community Why Uniquely Human? A deeper understanding of ASD builds trust with students and families Makes us all be\er people Makes our communi8es more humane and caring