By Dr. Stephen Shore —
Boom! The autism bomb hits the mark, spreading shrapnel throughout the lives of the individual on the autism spectrum, their immediate and extended families, friends, the community, and all involved in supporting people with autism. Expectations and dreams suddenly veer off course. What to do?
Like with up to 50 percent of individuals with autism (Hansen et al., 2008; Jones & Campbell, 2010; Lord, Shulman & DiLavore, 2004) the autism bomb struck me at 18 months with loss of functional communication, meltdowns, withdrawal from the environment and self-abusive behaviors (Shore, 2003). With so little known about autism in the mid 1960s, my diagnosis of strong autistic tendencies, atypical development and childhood psychosis by the James Jackson Putnam Children’s Center was given a prognosis of lifetime institutionalization – employment in a sheltered workshop if I were lucky. My parents worked to make sure that did not happen.
Well… I did end up spending time in a couple of institutions – of education. Boston University where I got my doctorate in Special Education was one, and my current “institution,” Adelphi University where I focus my efforts on improving the lives of individuals
on the autism spectrum.
Turning away from closed Doors and Stepping Through the Window of Opportunity
Ahead of their time, my parents advocated on my behalf and convinced the Center to take me in about a year. Although the diagnosis was devastating to my parents, they quickly implemented what today would be termed as an intensive home-based early intervention program emphasizing music, movement, sensory integration, narration, and imitation.
Rather than following the paths of behavioral and/or pharmaceutical solutions the approach my parents took resembled the developmental methods of today such as the Miller Method (Miller, 2007), Floortime (Greenspan & Wieder, 2009), and Relational Development Intervention (Gutstein, S., Baird & Gutstein, H., 2009). Purely through parental instincts my parents gave me what I needed as opposed to attempting to fit a square peg into a round methodological hole. Perhaps my parents’ approach most closely resembled the SCERTS methodology of after fully assessing for a child’s needs, a program is assembled from existing techniques to provide the best support possible
(Prizant, Wetherby, Rubin, Laurant, and Rydell, 2006).
At first my parents tried to get me to imitate them – but without success. Rather than staring at the closed door of getting me to imitate them, my parents stepped through the window of opportunity by imitating me. As a result I became aware of their existence and progress began.
By age 4, speech was beginning to return and I enrolled in the James Jackson Putnam Children’s center with an upgraded diagnosis of merely being a neurotic, rather than a psychotic child. Things were looking up.
Although my parents did not realize it at the time, they heavily influenced my research agenda of comparing different approaches for educating children on the autism spectrum with the goal of matching practice individual needs. The topic of matching practice to needs shall be explored in future issues of Autism Brainstorm.
Buying a Ticket Out of Perseveration Station and Taking the Train to Successful Employment
Taking a sharp steak knife I would pop the back off a wristwatch, unscrew the tiny bolt attaching the watch motor to the stem used to wind up the watch, and then be lost in a world of miniature gears and springs. Nothing was better than the micro world of watch motors where things made sense. Curious about this ability my parents soon supplied other devices to disassemble – and made sure that I got them back together again with no pieces left over and still in working condition!
Rather than considering the fascination of disassembling watches as aberrant or even as something to use a reinforcement for good behavior, they supported the interest and shaped it into something that led me high school and college employment as a successful bicycle mechanic to
the point where I even had my own repair shop!
Using interests and strengths as guideposts for determine meaningful employment for individuals on the autism spectrum is another important area that will also be explored in my future contributions to Autism Brainstorm.
Originally, an autism spectrum diagnosis was considered as a destructive bomb shattering lives and ruined expectations. Fortunately my parents were pioneers in looking at what I can do rather than perseverating on the limitations of having autism. Society is catching on this concept. Organizations such as Specialisterne in Denmark where the founder’s goal is to have a million jobs worldwide for people with Asperger Syndrome focusing on the strengths and abilities people on the autism spectrum do have.
Rather than considering autism as a destructive bomb, Autism Brainstorm will encourage us to turn away from closed doors of limitations to open doors of opportunities as autism becomes da bomb.
Stephen Shore, Ed. D.
Assistant Professor of Special Education, Adelphi University
Internationally renowned author, consultant, and presenter on issues related to the autism spectrum
Greenspan, S., & Wieder, S. (2009). Engaging autism: Using the Floortime approach to help children relate, communicate, and think. Cambridge, MAL Da Capo Lifelong Books.
Gutstein, S., Baird, C., & Gutstein, H. (2009). The RDI Book: Forging New Pathways for Autism, Asperger’s and PDD with the Relationship Development Intervention Program. Houston, TX: Connections Center.
Hansen,R.,Ozonoff,S.,Krakowiak,P.,Angkustsiri,K.,Jones,C.,Deprey,L.,Le,D.,Croen, L., Hertz- Picciotto,I. (2008). Regression in Autism: Prevalence and Associated Factors in the CHARGE Study. Academic Pediatrics.8:25-31.
Jones, L and Campbell, J. (2010). Clinical Characteristics Associated with Language Regression for Children with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 40: 54-62.
Lord C., Shulman C. & DiLavore P. (2004) Regression and word loss in autistic spectrum disorders. Journal of Child Psychology and Psychiatry 45, 936.
Miller, M. (2007). The Miller Method: Developing capacities in children on the autism spectrum. London: Jessica Kingsley Publishers.
Prizant, B, Wetherby, A., Rubin, E., Laurant, A, & Rydell, P. (2006). The SCERTS model: A comprehensive educational approach for children with autism spectrum disorders. Baltimore, MD: Paul Brookes Publishing.
Shore, S. (2003). Beyond the wall: Personal experiences with autism and Asperger Syndrome. 2nd. Ed. Shawnee Mission: AAPC Publications.