Dr. Stephen Mark Shore – TRANSCRIPT
I’m here to talk about autism. I’m here to talk about using the idea of awareness as a launchpad, to taking things to the next level, to acceptance, to appreciation, and that is what I refer to as the three A’s of autism.
We’ve had a lot of work on awareness, organizations such as Autism Speaks, The Autism Society of America, many other organizations around the world have brought the level of awareness of autism to unprecedented levels. And that’s great. But where is the next step? The next step, I believe, is acceptance. Acceptance that autism is here, and working with people on the autism spectrum, as opposed to doing things to people on the autism spectrum.
The third A, appreciation. And that is where we see those of us on the autism spectrum, valued for who we are, for the contributions that we can make to society. So on that note, let us look into the world of the autistic mind, and we have a couple of pictures here. There are some differences between these pictures, small differences between the picture on the top and on the bottom. And if you focus on these pictures, you will see perhaps that there is only three yellow boots, or whatever they’re called, on the bottom of those poles, on the bottom, but these four in a row on the top. If we look at the zebra at the hind leg, at the bottom there seems to be a wide expanse of white, whereas the full complement of stripes, is on the zebra on the top.
If we look at the brown horse to the zebra’s left, on the top, there’s a red bridle on the bottom, it’s blue. Those are some of the differences that we see. Oh, by the way, looks like somebody dropped a quarter or something on the floor in one of those pictures. So, as we consider the details of these pictures, let us think about what we are looking at. It’s a carousel.
What was the animal on the foreground? A zebra? Or maybe it was a horse. How many animals were in the row closest to us? Three? Two? Four? It can be hard to answer these questions. And that is because I forced you to perceive these pictures as many of us on the autism spectrum perceive our world. We tend to focus on details, so much so that sometimes we’re accused of having a lack of central coherence, or getting the big picture. But as we look about the world, as we look about our environment, other times when it is advantageous to be detail-oriented, perhaps as a computer programmer, maybe a designer, mathematician, tax accountant, and in these situations it’s highly valued to be detail-oriented, perhaps even at the expense of central coherence, or getting the big picture.
So are we looking at a deficit in central coherence, or in these situations, are we looking at when people perhaps have difficulty in these areas, a deficit in detail-oriented thinking? So as we look at all the characteristics of autism, every one of them can be flipped around, to be an advantage in particular situations. And as we look at the characteristics of autism, one characteristic is an extremely widely varying skill set. And what that translates to, is that the challenges we face, can be really significant, they can be deep, but, there’s also going to be corresponding strengths. And that is where we see the superpowers of autism.
There are some companies that have recognized these superpowers, that appreciate those of us on the spectrum for who we are, small software companies, who actively seek people on the autism spectrum, who have vowed to hire one percent of their workforce, of people on the autism spectrum, small companies such as Microsoft or SAP. So what brings me to you? Well, let’s take it from the beginning.
Things are pretty typical at first. At 24 hours of age my wife says I look like an egg. And then, at 18 months like, what happens to about 20 or 30% of us on the autism spectrum, the regressive autism bomb exploded. There’s a loss of functional communication, meltdowns, withdrawal from the environment, and in brief, I became a pretty severely affected child on the autism spectrum. There was so little known about autism, it took my parents an entire year to find a place for diagnosis.
And when they did, the doctor said they have never seen a child who was so sick, and they recommended institutionalization to a place like Willowbrook. Well, in some ways the doctors were right about the institutionalization, and I am now in an institution of higher education right here at Adelphi University. So getting back to my situation.
My parents, like we see so many parents today, they advocated on my behalf, they convinced the school to take me in about a year. And it was during that year that my parents implemented, what we would today refer to as, “an intensive home-based early intervention program.” And this was a program emphasizing music, movement, sensory integration, narration, imitation, play-based therapy, therapies such as the Miller method, floor time, daily life therapy. This is terminology that we have today. In those days the concept of early intervention did not even exist.
It was parents struggling to reach their child. So what did they do? Well, first they tried to get me to imitate them. It didn’t work. Even though imitation is a time-honored educational approach, many of us on the autism spectrum may be at a point where we’re just unable to imitate, so then they flipped it around and they imitated me. And once I did that, I became aware of them in my environment, and they were able to pull me along.
And I believe the key implication is – be it education, be it employment, be it friendship, be it involvement in the community – is that you first have to establish a trusting relationship with the individual. Then you can move on. And moving on, my parents understanding intuitively what I needed, appreciating what I needed, came into my life, and then they were able to bring me into theirs. With the work that my parents did, speech began to return at age four I got reevaluated by the school that initially rejected me.
Instead of being considered as psychotic and ready for an institution, I got upgraded to neurotic. Things were looking better in the world! We often hear about, as the diagnosticians refer to, as restricted interests of people on the autism spectrum. My first restricted interest at age four was taking apart of watch, very much like this. I was found in our kitchen popping open the back of this, a watch like this, with a sharp knife, I’d take out the motor, take out the gears, the hands, play with them, and then put it all back together again. The watch still worked, and there weren’t any pieces left over.
My parents noticed this. They turned away from the closed door of disorder, deficit, and disability, and looked at the open door of ability. And rather than autism being a bomb, perhaps autism can become “da bomb.” And how does the autism become da bomb? It involves appreciating the strength, that the characteristics of autism bring to us. So let’s take a look.
Let us suppose we have an individual who might have been diagnosed with Asperger syndrome. He’s very talkative, he’s an adult. And let us consider what the implications are of the characteristics of someone in this situation. Say perhaps who works in a busy train station, such as Penn Station. Let’s call him Robert.
Let’s look at the characteristics, deficits in communication: that ranges from having difficulty in developing a reliable means of communication, all the way to maybe someone like me who talks too much. And maybe that’s what happens with Robert. The verbal characteristics of someone like Robert might be talking in a very detailed, factual, data-driven way, truthful, perhaps too truthful, repetitive, repetitive, repetitive, I think you get the idea. How many times have you asked someone to repeat directions when you’re lost? So he provides these directions. What about social interaction? Well it’s a brief reading, the customer asked for directions, or when a certain train leaves, he delivers them, and then they go away.
So, the social interaction piece works. And what about those interests? Instead of calling them a restricted interest, let’s call them a focused interest, a passion, deep interest, and as a result, instead of where his co-workers have to look up this information and reference, he’s got it all memorized. As a result, because Robert is on the autism spectrum, because he has these characteristics, he outperforms his co-workers who don’t have autism. And this is how we need to take a look at the autism spectrum, appreciating the strength that those of us have. Now what about those challenges? I think you will all agree that autism brings significant challenges.
Otherwise there wouldn’t be so many people trying to figure it out. And we do need to address them. But we do need to be aware of the strengths as well. So as we look at autism, as we look at the challenges, as we look at the strengths, I suggest that we transition from thinking of autism as a collection of deficits, disorders, and disability, and turn towards the open doors of abilities and strengths, and appreciating what people with autism have to offer to the world. And we can do that by considering the three steps, the three A’s of autism: awareness piece, knowing autism when we recognize it, recognizing autism when we see it; accepting that autism is here; and rather than doing things to people on the autism spectrum, let’s work with the autism spectrum, let’s work with those characteristics, and appreciate the strengths, that people on the autism spectrum have.
They can provide to society. So as we think about the strengths, what about people with autism you know? People who happened to have differences. What are you going to do? What steps are you going to take, to climb the stairs of awareness, and acceptance of people with differences in your life? Thank you very much.