THE GREATNESS OF AUTISM

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By Stephen Shore

Learn from the true experts - those on the spectrum

Stephen Shore

Stephen experienced regressive autism, lost functional communication and was recommended for institutionalization. Today he is independent, happy and successful. He is a world renowned speaker, teacher and an acclaimed author. Stephen's books explain some of the puzzling behaviors of autism and how to cope with the challenges.

Stephen's Interview

What age did you start speaking and what was your prognosis at that time?
After 18 months of typical development I experienced “Regressive Autism”, which I refer to as the “Autism Bomb.” I say this because it can feel very much like the explosive power of a bomb shattering the lives of the person with autism as well as family members. It took a full year for my parents to receive a diagnosis of “Atypical Development, strong autistic tendencies, and psychotic” as well as being termed as the “sickest child” the diagnosticians had ever seen. My parents were told to put me in an institution. Fortunately, they refused. They convinced the school to accept me in a year and I received what we would now term as an “intensive home-based early intervention program emphasizing music, movement, sensory integration, narration, and imitation.” My speech started to return at age 4. By age 5 my verbal interaction skills were about par with what would be expected at this age level.

When did you realize you were different to everyone else?
Since age 5 I knew I was different than most other people. I was very fortunate in that my parents openly used the term “autism” around the house just like any other word. The important implication is that whilst we didn’t know much about the condition it certainly helped to explain a lot of differences. For this reason I advocate telling a child with autism that they are on the spectrum as soon as possible and of course in a developmentally appropriate manner. Regrettably disclosure to a person with autism about their condition commonly occurs later in life, often creating much confusion for a person who deep inside knows they have a difference, but has no way to conceptualize the situation. In response to this challenge I have developed a four-step strength-based approach to inform children and adults who have autism that they are on the spectrum.

Are you independent/currently employed and if so, what work do you do?
I help people with autism lead fulfilling and productive lives to the greatest extent possible. This mission is accomplished through Autism Spectrum Disorder Consulting where I engage in the following four activities.
First, I give music lessons to children on the autism spectrum. In addition to the therapeutic benefits of engaging with music, learning to play an instrument provides a real life tool in which to interact with others and to get involved in the community by joining a musical ensemble. Plus… it’s just plain old fun! We need more of that.
Secondly, I consult to schools systems and present on issues related to the autism spectrum internationally. At this time I have presented in 39 of the 50 states as well as 6 out of 7 continents. Third, I teach courses and special education and autism to prospective and continuing teachers at the college level. Other courses I have taught include statistics and other math courses, computers, and a number of music classes as well. Finally, I write books and article related to the autism spectrum. More about these publications can be found on my website.

Are you married and do you have children?
Dating was always confusing to me because I never properly perceived nonverbal cues. I met my wife in a graduate program in music education. We were walking on a beach one day and she suddenly held my hand, kissed and hugged me. By then I had a form of social story worked out to help me decode if a woman was interested in dating me. That event occurred over 20 years ago and we have now been married for almost 18 years. I feel we have developed a great understanding of each other and life together just gets better and better! We have no children as we feel our lifestyle is not conducive to good child rearing. However, there are thousands of children with autism within bicycling distance of my home – and around the world – whom I can play and be with any time I want.

Do you have any accomplishments you'd like to mention? (Such as education, work achievements, personal accomplishments)
My latest accomplishment is that I finished my doctorate in special education with a focus on the autism spectrum late last year. My dissertation Examining Five Promising Approaches for Treating Children on the Autism Spectrum focuses on matching best practice to the needs of children on the autism spectrum. Another accomplishment includes writing three books on autism titled
Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome
Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum
Understanding Autism for Dummies
There are more books and a DVD in the works as well. Yet other accomplishments include being married for almost 18 years, as well as finding a way to help others on the autism spectrum. Every time I can help someone develop greater understanding about autism I feel is an accomplishment as well.

What age did you start having meaningful conversations (a back and forth, rather than just answering questions or talking about your interests?)
Although I lost functional communication skills at age 18 months, only to have them begin to return as a four-year-old, I started having true back and forth conversations at age 5. That’s when my speech had pretty much normalized.

What age did you become interested in making friends?
I have been interested in making friends since about age five. It is my sense that people with autism don’t want to have friends is a myth. What seems more accurate is that those of us on the autism spectrum have a different way of making friends. Additionally, some of the skills needed to make friends may need direct instruction rather than expecting people with autism to learn by mere observation.

What special interests did you have as a child? Do you have special interests now?
I had many special interests as a child. Sometimes there was more than one at a time. These special interests included:
As an adult I still maintain a number of special interests. The strongest ones for me at this time include music, bicycles, psychology, and autism. I believe engaging special interests of people with autism are the key towards success and fulfillment in employment, education, relationships, and in other areas of life.

What type of people do you relate to? Are you drawn to specific qualities or common interests?

As a child most of my friends were older than I was. In later years, many were from other countries and cultures. I noted that my experiences were common with others on the autism spectrum as well. While people know what to expect from their own culture, other cultures do not detect as many differences. People from another culture have their own challenges integrating into a society and they may be more tolerant or even appreciative of people with differences. In fact, Tony Attwoods has research on his website indicated that the most successful relationships with people on the autism spectrum involves others with difference in culture, age, religion, and many other vectors. I tend to be attracted to people having passions for various interests. Other specific qualities include persons who are honest in the communication rather than giving mixed messages. Certainly having interests in common with mine can be helpful in making friends but aren’t a requirement. Some of my friends are on the autism spectrum whereas others are not. I think it’s important for people with autism to have ties to their community in the form of friendship with others on the autism spectrum. However, I think having friendships with people outside of the autism spectrum are also necessary towards leading a balanced life.

Do you have specific routines you like to keep and what coping strategies do you use when things change unexpectedly?

Some specific routines I have include waking my wife in the early morning and helping her prepare for her day. I prepare her breakfast and lunch and warm up the car during the winter. After she departs I will sleep for about an hour and then start work at home. Most of my work consists of giving music lessons for children with autism and writing is done at home. Living in a home engenders all kinds of domestic routines. In many ways my wife and I have a gender role reversal regarding societal expectations of work and keeping a home. However, it works well for us and that’s what matters. I travel by plane about 50 times a year to consult on and present at conferences related to autism. Although security and other procedures may often seem to be a bothersome waste of time, they provide a sense of predictability. Flight delays and cancellations are very common. However, there is a routine to those as well. There will be a later flight one can catch if needed. At worst, an overnight in a hotel near the airport will be needed. Fortunately, airplanes is a special interest of mine so I have gotten to the point where I know where the good seats are on different airplanes, figured out how to increase my chances for scoring the ever-elusive upgrade, and even can tell the difference between Boeing 747-100’s, 200’s, and 400’s. There is no 300 but there will be an 800. Travel is often a great challenge for people with autism. In response to that challenge I plan on creating a resource to promote safe travel for people with autism.

If you could change one thing about neurotypicals, what would it be?

Greater awareness, acceptance, and appreciation of people with autism and other differences would be a great change. I like to think of autism as a different rather than a disordered way of being. This does not obviate the fact that there can be many aspects of autism that are disordering. Not having developed a reliable means of communication, suffering from digestive problems and not pooping for 2 weeks, or dealing with sensory issues that disrupt interaction with others and learning are all serious problems that must be addressed. Through the use of appropriate interventions in the educational/developmental/behavioral, sensory integration, and biomedical realms we can help people with autism lead fulfilling and productive lives with their differences.

Did you have self stimulatory behavior as a child and do you have any now? If so, how do you deal with this in public?

Reframing self-stimulatory behavior as self-regulatory behavior is more helpful in understanding its cause, what it represents, and what to do about it. These behaviors serve different purposes such as calming a person down or keeping them awake. That said I did have such behaviors as a child. I remember my parents telling me to stop flapping my hands. However, if this type of behavior is recognized as an effort towards self-regulation, then it becomes easier to think about redirecting, rather than trying to stop the behavior.

How do you deal with sensory challenges when you have to appear at occasions such as a wedding or social event?

Adding structure into these events can be very helpful. Additionally, I make sure to take breaks before I become overwhelmed with too much sensory input. One example of my structuring a situation is to find a piano and route my interactions as the musician of the party. Family parties and other socially based gatherings can be very difficult for people with autism to navigate. I think it is important to find some way to make sure that there is structure in these situations. For example, perhaps a person with autism could help with setting the table at a family gathering or given some other “job”. A goal to strive for is to educate a person with autism when to recognize when a social gathering is unstructured and give him or her tools to cope such as what I do when I find a piano.

Are you close to your sibling(s) and how was it watching your sibling succeed at things that were much more difficult for you, particularly if he/she/they were younger?

We had quite a wild time growing up. I am the youngest. My brother who is two years older was diagnosed with mild to moderate retardation. My sister who is four years my senior seemed to get all of the “typical” genes of the family. I feel very lucky because my parents created a supporting and loving environment where people were accepted for whom they were. At the same time, they realized that if my brother and I were to lead fulfilling and productive lives to the fullest extent possible there would be many challenges to overcome. As siblings we still keep in touch and enjoy each other’s company when we can get together.

If you could advise parents about one thing, what would it be?

When your child is diagnosed with autism, he or she is the same child you had before the diagnosis. It’s also important to realize that a parent will often go through a period of often painful mourning for the child they thought or wish they had. It’s nothing to be ashamed of and is a natural process. Eventually, acceptance of the child comes with the realization that there may be many significant challenges to overcome if their offspring is to lead a fulfilling and productive life. In short, the potential of your child is the same as with every other child – unlimited. The challenge is to figure out how to access this potential. That is what interventions and educational techniques help us do.

If you could advise teachers about one thing, what would it be?

When I give teacher in-services, one aspect I emphasize is learning styles. There is a myth that all persons with autism have visually based learning styles. From my interactions with my friends and colleagues on the autism spectrum I think it’s more accurate to consider the following. While most people with autism are visually based not all of us are. Therefore, it’s important to be sensitive to the possibility that a person with autism may favor the kinesthetic, aural, or other modality for learning. What can be said is that whatever the learning style is it will probably be to an extreme.

If a person close to you is upset about something, how does it affect you? Do you feel empathy for them?

It’s a two-step cognitive. At first I will fuse to that other person’s emotion and then start wondering why I have such a strong emotion that seems out of context for a situation. At this point I will then ask the person I am near if they are having that same emotion. Often I will find out they are. For example, I might feel anxious about something but can’t quite put my finger on it. I then may ask me wife if she is having anxiety about something. Often she will indicate she is. With confirmation of her emotional state I am then able to separate from her emotion and feel for her rather than just fusing to the emotion. That is empathy. Most people develop empathy just through observation of another person’s emotional state. For many people with autism, achieving an empathic state require cognitive step like I just described.

Can you assess how people are feeling by their expressions? If not, how have you learned to deal with this?

Reading facial expressions can be very difficult for me. However, I can often perceive when someone is having an emotion – just not the specific one. Therefore, I will ask probing questions to verify that I am detecting an emotion and to find out what it is.

Can you drive a car and do you have a license? If not, does it upset you that you are not able to drive?

Although I drive and own a car, I much prefer to ride my bicycle because it is more fun and gives me the proprioceptive and vestibular input I seek. Specifically, for people on the autism spectrum it does seem that fewer of us drive then in the general population. That may be due to the greater incidence of sensory and perceptual challenges in people with autism then in the greater population.

Do you have anything you would like to add?

With today’s research and intervention, the “Bomb” in the term “Autism Bomb” need not be as destructive as one might initially fear. People with autism have a multitude of strengths that can be beneficial to everyone. The potential of those with autism is unlimited. Finding ways to engage the strengths of people with autism will greatly increase the chances for leading fulfilling and productive lives. It is the challenge of persons supporting those with autism, in concert with people on the autism spectrum, to find ways of unlocking this potential.

We are honored that Stephen has taken the time to share his experience. If you appreciate it too, PLEASE be kind enough to let him know!

Beyond the Wall by Stephen Shore
Support Stephen and purchase his fascinating biography
As a child, Stephen experienced regressive autism and lost all functional communication. This book explains what it's like "on the inside" and will fill you with hope. Stephen begins by describing a typical day in his life and gives great insight to sensory challenges. The sound of the blue jay outside his window feels like it's beak is scraping his eardrum. Shaving feels like a power sander on his chin and Stephen rides his bike for stimulation and to avoid the smells of public transportation. Written with humor and style, this book will make you laugh and cry as you read about some of the puzzling behaviors of autism and how to cope with the challenges.

Autism for Dummies by Stephen Shore

Finally a book that gives everything in a nutshell. It covers diagnosis, medical and biochemical interventions, sensory issues, learning environments, education, social skills and relationships. This book is also perfect for explaining autism to others that are not familiar with it. At last there's an easy way to educate Grandma, friends and work colleagues on what it really means to have autism. This book supports parents and caregivers by explaining how they feel and what they're faced with when their child is diagnosed.

Photo quality flashcards to teach conversation skills to children with autism

All of the materials on this site are used for teaching a child with autism, pdd nos, high functioning autism, aspergers, speech and language delays, mild autism, special needs, autism spectrum disorder,special education. Specializing in the treatment of autism using aba therapy, social stories for autism, early intervention, tools for autism, applied behavior analysis, verbal behavior, teaching child with autism, autism spectrum, autism teaching tools

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