The Stephen Shore Story

Hi, I'm Stephen Shore and I am autistic. After 18 months of typical development, I was struck with the regressive Autism bomb. As you find with about 30% of us on the Autism Spectrum, I lost functional communication, had meltdowns, withdrew from the environment, and in brief became a pretty severely affected autistic little child. 

There was so little known about Autism in those days, so little that it took my parents a full year to find a place for diagnosis. I was two and a half years old when they got an appointment and the doctor said they had never seen such a sick child. He recommended institutionalization. Fortunately, my parents were like so many parents we see today. They advocated on my behalf, and they convinced a school to take me in a year's time. It was during that year that they implemented what we would today refer to as an intensive home based Early Intervention program. It was a program that emphasizes music, movement, sensory integration, narration, and imitation. That's using today's terminology in those days the concept of early intervention didn't even exist. My parents were just desperately trying to reach their child, wondering what had happened. How can we reach our child who before was interacting, but now had withdrawn? 

First, they tried to get me to imitate them. Imitation is a strategy that's been used worldwide for quite some time. It's a well used educational strategy. However for many Autistic people, it doesn't work, especially in the younger years, so my parents flipped it around. They imitated me, and in doing so I became aware of them in my environment. Then they were able to move me along. 

So I believe that the key prerequisite for doing good work and interacting with an Autistic individual, is you have to develop a bond, you have to develop a trusting relationship before moving on. The interesting thing is, I think that holds for everybody else as well, whether they're on the Autism spectrum, or not. So as a result of the work that my parents did, my speech began to return at age four. 

Age four is also when I got engaged in one of my, what would have been called, a restricted interest. Thankfully we are now getting away from the negative association of restricted, and now it is being referred to as a focused interest. 

My parents found me taking apart a watch with a sharp knife. I'd pop open the back, extract the motor, disassemble that, play with the gears, put it all back together again, and the watch still worked. There weren't even any pieces left over. My parents noticed this. They turned away from the closed doors of disability disorder and deficit and looked at the open door of ability and soon provided all kinds of other devices to take apart and to put back together again. 

Now what I find interesting is that how was it that I could have the fine motor control to take apart a watch with such tiny pieces, not even using the right tools, a sharp knife, but when it came to penmanship in school, I was a penmanship disaster. So many autistic people have difficulty with penmanship. 

One thing that should be highlighted for autistic people, is the sharp line of demarcation between ability and disability. So while I do talk about abilities and using a strength based model, it's important to recognize the often significant challenges that autistic people face. We do need to recognize and remediate for them. We need to work with these challenges and provide support for them. However, at the same time, we need to consider what are the strengths? What can we do to work with those strengths to help that autistic child lead a fulfilling and productive life. 

So at age four my speech had begun to return and I entered the school that had initially rejected me. They re-evaluated me and instead of being considered psychotic and ready for an institution, I got upgraded to neurotic so things were looking up in the world. 

At age six, I entered regular school kindergarten and there I was a social and academic catastrophe. I didn't know how to interact with my classmates in a way that they could understand, saying the letter B over and over again, perseverating on that sound didn't endear me to my classmates. Today we have social interaction strategies, social narratives, to help teach autistic people to more effectively interact with others but that time they didn't exist. I was just this weird kid saying the letter B over and over again. As a result, there was a lot of bullying. Fortunately, in the United States, increasing numbers of school systems are required to submit anti bullying programs to their state Department of Education. So people are beginning to realize that bullying is not a developmental phase that people need to go through. Academically, I was about a grade behind most of my subjects. the teachers didn't know how to reach me but I had my interests. One of the reasons I enjoyed going to school was that I could go into the library and get all the books on whatever I was interested in that time. I would go down and get all the books on astronomy, for example, pile them on my desk, read them, take notes, copy diagrams and then when I was done, I'd read them again. Finally, I'd have enough of astronomy, I’d take them all down to the library and get a whole stack of books on some other interests, such as the weather, such as dinosaurs, such as earthquakes, or some other sciency type subject. I remember in third grade, I had a stack of astronomy books on my desk, busy taking notes and copying diagrams and a teacher told me that I'd never learn how to do math. Somehow I figured out just enough math to teach statistics at the university level! 

The good news today is I see more educators noting when there is a special interest or a deep interest, and finding a way to work it into the curriculum, and in that way, it makes the curriculum intrinsically reinforcing. Typically you would tell a child, if you do what you need to do in math for the first 20 minutes, then you can play with your item of choice for the next 10 minutes, that's an extrinsic reinforcer. The reinforcer doesn't have anything to do with the activity that you're working towards. 

What is more powerful is to use an intrinsic reinforcer which would involve using the interest, in my case it was astronomy, and using that interest to teach mathematics for the full 30 minutes. In this way you are working with the Autistic characteristic. Working with awareness of the characteristic of the deep interest and not working against them, saying, well, this is something that we need to get out of the way, but rather accepting this interest and working with it. 

So then it was on to middle school. You don't need to be autistic to have difficulties in middle school but for me, it was actually easier. One reason it was easier is that I finally figured out that using words instead of sound effects from the environment, really helped with social interaction with my classmates. Secondly, I was able to engage in my focused interest in music so I joined the band. Now I had a structured activity in which to mediate my interactions with others which is what we need. We need that structure in order to have something in common to talk about with our classmates. Music became so interesting to me that I got it into my autistic head that I needed to learn how to play all the instruments. I would go into the instrument closet, disassemble, reassemble, figure out how the instruments worked, sometimes combining two or more instruments together to create concoctions that never should have seen the light of day. While I didn't learn all the instruments, I did get it up to about 15! I heard that a requirement for a degree in music education was that you have to learn all the musical instruments so that you could teach them to students you are working with. Well, that just seemed to be the way to go and that's exactly what I did. 

Now we're getting into the idea of transitioning to adulthood and some areas that are important to consider, include continuing education, this might be a vocational school and might be a university. There's also relationship concepts, such as dating, marriage. Most high school students in the United States drive, so what about driving for autistic individuals? These are things that we need to think about and that are important. I know for me driving was reasonably easy to work out. I was lucky that my grandfather gave me a car when he decided he didn't want to drive anymore. So I had this car, although I wasn't really interested in it. I remember telling my parents that I didn't really want it and they said, No, you really should take it. So I took it. I put it in the driveway so then if I want to use it, I guess it's there. So I studied. I studied what I needed to study in order to drive. I took driver's education which was offered through the school. I took my driving test, I passed the driving test. Now the car and I got to be good friends. It was great for getting around and certainly later on when driving between college and home, and now I am very comfortable driving between Boston and New York, and many other big cities. It's also important to realize that just like in the general population, not everybody on the Autism Spectrum is going to drive. 

So then it was on to college, undergraduate and music education. I enjoyed that quite a bit. Then on to a master's in music education, and then all of the coursework for a doctorate in music education. However, after I finished the coursework, I started becoming more interested in Autism. I got so interested in Autism that I defected from the music school, to the School of Education and got my doctorate in special education. 

Now, I spend my time teaching at Adelphi University as a professor of special education, teaching and researching mostly on issues related to Autism. I also travel the world, consulting and advocating for autistic people leading fulfilling and productive lives as the rule rather than the exception. I also write books and articles on Autism. Finally, during the rare times, I'm home, I give music lessons to autistic children. 

Another important area of transitioning to adulthood is relationships. I know for me, dating was always a mystery. When I had my first encounter, I remember in undergraduate school, after spending a lot of time with this lady, she told me that she really likes hugs and back rubs. My thought was, well, gee, I've got this brand new friend and she doubles as a source of deep pressure very much like a Temple Grandin squeeze machine. However, I guess she had other ideas and after a long conversation, I realized that she wanted to be my girlfriend. Maybe she even thought she was my girlfriend, and she thought she was dating me but I had no idea, I was just totally clueless. I think it goes far beyond just typical male cluelessness on these things anyways. However, what this taught me is that there was this whole area of nonverbal communication and there's a lot of this stuff when it comes to dating. So then it was off to bookstores, spending hours reading texts on body language, nonverbal communication, dating for Dummies. and building a lexicon of strategies on how to figure out How To date! How to recognize if somebody is interested in dating you. 

After a number of years of study, we now fast forward to my graduate degree. After spending time with this lady, reviewing each other's homework and then doing things socially, one day we were at a beach, and she suddenly gave me a kiss, hug and held my hand. It was at that point where, what you might say, a social story suddenly formed in my mind, and it went something like this. If a woman hugs you, kisses you and holds your hand all at about the same time, it probably means she wants to be your girlfriend. If that's the case, you better have an answer right away. It could either be yes, it could be no, or it could be further investigation and analysis is indicated. Well, it seemed to be a good thing to do. Now we've been married for nearly 30 years. If you want to find out what life is like on my wife's side of the spectrum, then you can read her contributions to my autobiography, Beyond the wall. 

As I think about Autism and marriage, at least in my situation, Autism actually helps the marriage. It might be because first of all, my wife comes from a different culture, a different country, she's Chinese. So we recognize that perhaps there'll be more that we need to talk about, there's less that's automatically understood, because we have different cultures and different viewpoints. Now, if we add Autism on top of that, it means that there's going to need to be more discussion about things and a recognition that there'll be less of the so-called magical mind reading that occurs between couples. So in this way Autism actually helps. Speaking of Autism, there is research suggesting that the most successful long term relationships involving autistic people occur when the other person has some sort of difference. It might be neurocognitive. It might be racial, it might be cultural. It might be age or it might be some other vector. If we understand this, we can use this as an example of accepting this characteristic, and actually even appreciate it and find ways to help the autistic person develop relationships with other people, if that is something that they're interested in.