After his latest monthly workshop with Shema Kolainu, on Bullying Prevention, Dr. Stephen Shore sat across from us in the hotel lobby and told us the insider’s story. He told us he’d had autism since he was very young and stated “after 18 months of typical development, I was hit with what I like to call the autism bomb, otherwise known as agressive autism.” He started to lose the function of communication entirely and would have frequent meltdowns. This was 52 years ago. Now, he has written 5 books, is a professor of Special Education at Adelphi University with a focus on Autism, and he gives frequent workshops and lectures all over the world.
At the time when Dr. Shore was diagnosed so little was known about autism. It took an entire year for his parents to find a place for diagnosis and when they did, the doctors said they’d never seen a child so sick and recommended institutionalization. You would never believe it seeing him now.
His parents of course wouldn’t accept this and they convinced a nearby school to take him after they’d had a year to prepare him. During that year, his parents implemented what we now know as an intensive home-based early intervention program, emphasizing music, movement, sensory integration, narration, and imitation. However, at the time, they were foraging new grounds on their own.
His father, a liquor store owner, and his mother, who’d studied business and was then a stay-at-home mom tried to figure out any way that they could reach their child. They used instinctive ideas to develop a program for him and one of their tactics involved imitation. When he refused to imitate them, they opted to imitate him. The interesting thing is, all of it worked. His parents especially relied on music and would play music all the time around his home.
Dr. Shore told us that people with autism develop very specific interests on various subjects that doctors or researchers will often refer to as “restricted interests”. Dr. Shore however, likes to refer to these as highly focused interests, and he stated that music became one of those interests which he took with him and ended up studying professionally in school all the way to a doctorate degree in music education. He still teaches music lessons to children on the autism spectrum.
It’s been 5 years since Dr. Shore first started with ICare4Autism and he is now on the advisory board of ICARE and he focuses on employment of individuals with autism as it’s become a great frontier to be conquered. A whopping 88% of people on the autism spectrum are under- or unemployed as declared by National Autistic Society in England which means that only 12% are working to their full capacity. He said that people with autism “favor routine and predictability and when that’s translated to showing up to work every day, employers would want that.” He also states that Group Homes are another important area to address as they could be very helpful for many individuals on the spectrum in adulthood having varying needs for support.
Just as important as support for adults with autism is early diagnosis of children as it is important to start working with the children when the brain is most “plastic” or spongelike and malleable. “The longer one remains non-speaking, there is less of a chance that person will be able to use the skill of speech,” he told us. He stated that once a child is diagnosed they can begin accessing strategies that would be of great use to them and focusing on motivating communication. He says it is a complete myth that anyone with Autism who is taught other ways of communication would become to lazy to speak at all because they have found ulterior motives. On the contrary, learning sign language and using technology and vision boards help to compel speech in young children who had previously been non-verbal. He also stated that once people with autism know that they are on the spectrum, school and other endeavors will be more navigable because they will understand that they need different strategies and possibly additional time to learn. He reflected that growing up he knew he was different than all the other children, yet it explained why things were different for him. His parents used the word “autism” like any other word so this overall understanding helped him overcome a lot of challenges.
So what about the hat?
Many people may notice that Dr. Shore can frequently be seen sporting an Adelphi baseball cap and when we asked him whether his hat was just a favorite fashion statement, he chuckled and said yes, but that was only the secondary use. The truth is that the hat is an accommodation as he tends to be more sensitive to lights. His hat is just one of the many examples of the ways he’s learned to adapt and to interact with his environment in a way that worked with his individual characteristics and challenges.
His last remarks were that this was important for everyone to remember, and that the abilities of someone with autism can be unlimited, just as with anyone else, and we have to find a way to access that potential by finding the strengths of the individual that will lead to their success in employment, education, relationships, and adult life in general. His sixth book is currently in development and explores social experiences and relationships of individuals with disabilities following grade school. We certainly can’t wait to read it.