Autism Awareness Month: Interview with Stephen Shore
In honor of Autism Awareness Month I am continuing with my series of interviews with people who make a difference in the efforts to promote a greater understanding of this mysterious "disorder." Some people, including my next interviewee might not consider autism a disorder as much as a neurological difference. Stephen Shore is a well known advocate and author within the autism community. Stephen knows a lot about Autism Spectrum Disorders and part of that reason is that he is on the Autism Spectrum himself. Stephen has done much to educate the public about autism spectrum disorders and works tirelessly to do so. In fact, he was taking a break during an autism conference where he was presenting in order to allow me to interview him by telephone. It is my privilege and honor to present to you Stephen Mark Shore.
Thank you so much for agreeing to be interviewed Stephen!
Name: Stephen Mark Shore
Bio: Diagnosed with "Atypical Development with strong autistic tendencies" Dr. Shore was viewed as "too sick" to be treated on an outpatient basis and recommended for institutionalization. Nonverbal until four, and with much help from his parents, teachers, and others, Stephen completed his doctoral dissertation at Boston University focused on matching best practice to the needs of people on the autism spectrum. Recently, Dr. Shore has accepted a professorship at Adelphi University teaching courses in special education and autism.
In addition to working with children and talking about life on the autism spectrum, Stephen presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure as discussed in his books Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome, Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum, and the critically acclaimed Understanding Autism for Dummies. Stephen is also a fellow co-contributor to the book, Embracing Autism.
President emeritus of the Asperger's Association of New England, Dr. Shore serves on the Interagency Autism Coordinating Committee for the Board of Directors for the Autism Society of America, Unlocking Autism, MAAP, the College Internship Program, and USAA.
Web Site: Autism/Asperger.net
Merely Me: How old are you Stephen?
Stephen Shore: I am 47.
Merely Me: We grew up in the same era then. I am 44. What were things like for you as a child? Did people understand autism back then?
Stephen Shore: I was hit with the autism bomb when I was 18 months old. When I was two and a half I was diagnosed with autism. It was recommended to my parents that I be institutionalized. My parents did not act upon this recommendation and did what today would be called an intensive home based program. My parents taught me using music, movement, imitation, and narration.
Merely Me: What do you mean by "narration?"
Stephen Shore: Narration replaces saying "good job" repeatedly. It is like you are an excited sports caster describing what the child does in detail.
Merely Me: How have things changed in the realm of autism since you were a child?
Stephen Shore: Things have changed in that you went from having very little information on autism to having much greater information. There is a lot more information about biomedical treatments for autism as well. And the incidence has changed from previous numbers of one in ten thousand children being diagnosed with autism to one in one hundred and fifty.
Merely Me: What do you think accounts for these greater numbers?
Stephen Shore: There is better diagnosis and whereas before some of these children would simply be categorized as having mental retardation more children now are being diagnosed as having autism. Also there may be environmental toxins which contribute to this rise in numbers of diagnosed individuals with autism.
Merely Me: What is the one thing you wish more people knew about autism?
Stephen Shore: The potential for people with autism is unlimited and we need to find ways to access this potential through therapy and education. It will take everyone working together.
Merely Me: What are some myths about autism which are untrue?
Stephen Shore: One myth about autism is that children with autism never grow up to be adults. There is a very heavy emphasis on young children who have autism but there is very little focus upon adults. These kids will grow up and we need to provide for them when they become adults.
Another myth is that people with autism are all the same. I say that when you have met one person with autism, you have met one person with autism. Everyone is different.
Merely Me: What is your personal definition of autism?
Stephen Shore: A non-standard way of perceiving and interpreting the environment.
Merely Me: I like this. I always describe it as my son is wired up differently.
Merely Me: What are some of the early signs of autism that parents can watch out for?
Stephen Shore: A child who has difficulties with communication and verbal interaction, a lack of eye contact, and sensory sensitivities.
Merely Me: I am going to add that what I saw in my own child early on was a lack of pointing and asking the question, "What's that?"
Merely Me: What is the most difficult challenge of having autism?
Stephen Shore: Getting people to understand that autism is just a collection of characteristics which are not necessarily bad and not necessarily good. They just are. There is a stigma to having autism and preconceived notions of what people with autism can and cannot do.
Merely Me: What is the best thing about having autism?
Stephen Shore: Being able to perceive the environment differently and notice things others don't. I might notice patterns or colors that others don't care about. Also I am able to get involved in deep interests.
Merely Me: What would you like to tell parents and families who have just found out that their child has autism?
Stephen Shore: Your child is the same child before you found out. And the potential for your child is unlimited to lead a fulfilling and productive life.
Merely Me: Thank you Stephen for an amazing interview!