We autists are able to perceive only 7% of human communication - Professor Stephen Shore

SS:I just want to go to the origins, to where it comes from. Autism is the second-most prevalent neuro-developmental disorder among children today. About one in 68 children has been identified with ASD in the US. Why is it growing so fast? Or has it been always been there, but we just didn’t know about it before?

StS: Even just a generation ago we see a sharp increase in prevalence of autism – from 1 in 10.000 to 1 in 68 in the U.S., and I believe it’s a combination of greater awareness and expansion of the definition of autism, and also I think we may be doing something to the environment which may be causing the increase.

SS:Talking about the environment, there’s a new study that says that exposure to several common agricultural pesticides during pregnancy increases the risk of autism for children. Is it something you would agree with?

StS: I would say that at least that’s something that’s worth looking at and validating this study. We know that pesticides have been causing other health problems, so it’s possible that it’s also causing or contributing to the increase of autism. I do know that the environment is dirtier than it used to be and that’s causing an increase of all kinds of disorders.

SS:But, I mean, you researched autism. Do you have one core reason that causes autism, that causes this disorder, or there is no such thing? Or we still don’t know where it comes from?

StS: At this point the best minds in research believe autism starts with a genetic pre-disposition, and that can be seen as autistic characteristics tend to run in families. When I meet children on the autism spectrum, I often see those characteristics in their parents or other sibling – so that’s based on genetics. If we get deep into the science of genetics, the best that they’ve come to at this point is that the characteristics of the autism are spread over more than 100 genes. And then, this genetic predisposition interacts with something in the environment, and we have a lot of clues as to what that is: it might be, as you just mentioned, possibly pesticides, possibly other things. The problem is that we don’t have a firm grasp on exactly what those triggers are.

SS:Now, talking about real life – what is it like to be an autistic individual and at the same live a highly-functioning social life? Does it stress you out? Is it stressing?

StS: It can be. For those of us on the spectrum who are socializing, who are out in the community it requires a lot of thought, keeping track of the rules of the social interaction and it almost seems that most people have these rules built-in in their brains – it’s almost as if the program is hard-wired, but for those of us on the autism spectrum, even though it may not be “hard-wired”, the good news is that we can learn these rules of social interaction. A challenge can be that, number one, we have to be taught, and number two, we have to keep these rules in our minds as we socially interact: so, for example, sometimes I have to even remind myself to make sure that I give proper eye-contact, that I’m properly interpreting non-verbal communication and I believe that most people who are not on the autism spectrum don’t think about these things.

SS:So, you think that double-meanings are really hard to grasp for autistic people – is that what you’re saying?

StS: That’s right. Double meanings, idioms, mixed emotions, office politics - these can all be very challenging for those of us with autism. It just so happens to be that because this is a challenge for me, it’s actually became an area of special interest, something that I enjoy studying and thinking about, learning about. However, practicing it real-time can be a challenge.

SS:Now, we all know that school is a cruel environment. Children aren’t that tolerant to someone being different, children are actually pretty mean. How did you deal with it – I mean, you being very different from others in high school?

StS: Well, I found a public school, a grade school for me; it was very difficult, because as you said, I was different, very different from my classmates, so that meant there was a lot of bullying and teasing, and even till today we find that more people than not on the autism spectrum are bullied in school, and I believe the resolution to this problem is education. Education and developing awareness in students at the grade school level of people who have differences. Because, with greater awareness, with explanations as to why their classmate might be behaving in a certain way and doing a certain thing, comes the power to be of help. I’ve seen situations where the child whose diagnosis of autism was explained to a classroom, where work has been done in appreciating and understanding differences – the classmates become helpful to that student and bullying decreases sharply.

SS:Tell me something – how come some people with autism are able to find personal fulfillment in life, like yourself, and then others are stuck at a certain point in development and can never integrate into society. What does that depend on?

StS: Autism is an extremely widely varied condition, and I believe some of the preconditions for promoting success and fulfillment to people with autism has to do with recognizing restraints and accepting people with autism as who they are, but at the same time realizing that there may be significant challenges that need to be overcome. So, when I was diagnosed with autism, I was pretty significantly affected: I was non-verbal, I had meltdowns, and nobody knew what to do in those days. When I finally did get a diagnosis, my parents accepted me for who I was, but at the same time recognized that there were significant challenges to be overcome if I want to live a fulfilling and productive life.

SS:No, like you’ve said the prognosis for your future was pretty dire – I mean, institutions, doctors said you were very ill, but you were able to overcome all of that. What was the most important thing that helped you overcome it?

StS: Most important thing was that my parents believed that I was an intelligent person and they have responded to my intereStS, they promoted my intereStS. So, for example, at age four I was found in the kitchen, taking apart watches with a sharp kitchen knife, taking out the motor, the gears, the hands and putting it all back together again, and the watch still worked. So, instead of looking at that as, perhaps, some sort of strange behavior, and maybe I should be focusing more on social interaction and communication, soon my parents provided all kinds of other things to take apart. So, I think, promoting those intereStS in people with autism is an important road and an important key to success, and I find that those on the autism spectrum who are successful have found a way in which to follow their intereStS.

SS:Tell me something: if an autistic person has someone who gives him extra time, extra care and has an understanding and acceptance of who he or she is, does that mean that that person can certainly overcome autism?

StS: I think it increases the probability that they can learn better how to work with their autistic characteristics. So, when we talk about overcoming autism, I wonder if a better word is learning how to work with the characteristics of autism. So, I still have autism and still have challenges – I’ve learned how to work around these challenges and even to avoid some of these challenges that are particularly difficult, but still I’m able to live a fulfilling and productive life.

SS:Is it important for people with autism to be integrated into the society or it just feels more comfortable to be in your own world?

StS: I think it’s important for those of us with autism to be integrated into society. Society is pretty much integrated …we’re all integrated with each other. As for being in our own world – the way I look at it is that people with autism are in the world and in some cases are in the world too much. What I mean by that is that due to the sensory sensitivities we may perceive light, vision, sound, touch and other things more strongly than other people, and if the sensations are too strong, they can cause the person with autism to be overwhelmed and then appear to withdraw.

SS:So, this sensory sensitivity that you’ve mentioned – is that a common thing for all who have autism? What form does it take?

StS: At this point everybody whom I’ve met on the autism spectrum has sensory issues. I do have a friend on the spectrum, who says he doesn’t have any sensory issues at all, but I also wonder - why the shades are down in his house and the lights are off? The way these sensory issues can take place… for example, many people with autism perceive fluorescent lights like most people perceive strobe lights. So, imagine having to go through work all day or go through school the entire day in the room that’s lit with the strobe light. It’s certainly going to have an effect on your productivity.

SS:Professor, what do you see and understand that other people don’t?

StS: That’s a good question, because so often the focus is on what people with autism don’t perceive that most people do – but we can also flip that on its head and recognize that there may be things that people with autism recognize and see and perceive that other people or most other people don’t. Things that I often perceive, that other people don’t, include patterns, disruption in those patterns – for example, that makes me a very good proof-reader, or I can even see in a document if a picture is even one pixel, to one side or another, too far. Autism also helps me be a good musician and also understanding chemical devices. So these are some of the strengths that autism brings to me, that tend to be beyond the typical population.

SS:What is the hardest thing for you to handle while interacting with others?

StS: The hardest thing for me to handle is when there is mixed messages or mixed emotions. That is, for example, when the person is saying one thing, but they are actually feeling something else.

SS:You said you’re studying that phenomenon – why is it so difficult for an autistic person to understand what the other person is feeling? Did you come up with an answer?

StS: I believe that the difficulty stems from a difficulty or challenge in reading non-verbal communication. Research suggeStS that non-verbal communication makes up to 80% and some researchers believe even up to 93% of total interaction. So that means that those of us on the spectrum, we’re only getting, maybe 7% or 20% of the total interaction package. That 7% or 20% is just words. So, we’re highly dependent or over-dependent on the written or spoken word, when we have difficulty perceiving what is known as “pragmatics” or what is happening between the lines, or behind those words. That is why we tend to be very literal in our interpretation of language, because that’s all we have without the backdrop of the non-verbals.

SS:Now, you’ve also said that music is better understood by people with autism than words – do we know why?

StS: I believe that whatever scrambles the speech centers of the brain leaves the musical ones intact. One of my activities includes giving music lessons to children on the autism spectrum. I find that those individuals I work with – they are all over the spectrum, some are verbal, some are hyper-verbal, some are non-verbal, and their skill-set also ranges over the entire spectrum, where some of them could be professional musicians if they choose to, and others work harder at it, but they’ve still enjoyed it. I believe whatever the neurological reason is that allows people who stutter to not stutter when they sing is likely the same reason that music can speak to many people with autism, whereas verbal interaction may not or may be difficult.

SS:Now, since you’re saying that it’s really hard for you to read between the lines, how did you figure out what to do in your personal life, because you went to school, you went to college – I mean, you’ve had several dating experiences before you got married. So, how did that happen for you, did you make friends right away, and how were you dating women if it was so hard for you to understand the unspoken, the unsaid?

StS: Part of it is studying non-verbal communication, and what it is. Once I realized that non-verbal communication was, you might say, a channel of interaction, that caused me to become extremely interested in it, and I spent hours reading books on body language, social interaction, dating, relationships and so on, so I did my own intensive study on it. Another thing that helps me is just being very vocal about the things I don’t understand. So, for example, perhaps with my wife, it means that we have to talk about things more than perhaps the average couple, and there isn’t that, you might say, “magical mind-reading” the couples are supposed to have – we just realize it’s either not there or it’s going to be less than in a typical couple, so we talk about things, perhaps more than others, and in that way, perhaps, having autism even helps a relationship, because we have to talk about issues in order to understand them.

SS:Tell me something; is there such thing as “intuition” for autiStS? Do you have it?

StS: Yes, I do. People with autism do have intuition, I know many people with autism who are in some ways very good at reading certain aspects of people. I believe I’m pretty good in catching certain things about people when I interact with them, and maybe, that we look at things differently, than the typical population - in that way this could be helpful.

SS:You said you’ve studied body language like people study math or physics. You’ve been married for 20 years now – what about your wife? Was she familiar with your condition? How did she approach the whole thing when you guys started dating and living together?

StS: Well, it’s a very interesting question. When we started dating, and with my wife, like the other women I’ve dated – I never was able to perceive the non-verbal cues that indicated that the women was interested in me – so, they would have to, basically, just tell me. Same thing with my wife. We have met as music students and we started by reviewing each other’s homework, which then morphed towards doing things socially, and then one day at a beach, she suddenly gave me a hug and a kiss and held my hand. At that point I had a bit of a social story drawn, having been through some experiences of just “not getting it”, and at that point I created a bit of a social story, which went something like this: if a woman hugs you, kisses you and holds your hand, all at about the same time, it probably means that they want to be your girlfriend, and if that’s the case, you’d better have an answer right away. It could be “yes”,“no” or further investigation and analysis as indicated. It seemed to be a good thing to do, and as a result, we’ve now been married for a little over 24 years.

SS:Now, you were hired as a professor because of your autistic abilities, not in spite of your autistic limitation. So, autism can turn from an inhibition as it is commonly perceived, to an advantage, right?

StS: Yeah, that’s right. I believe that we’re reaching a cusp or a realization as a society that people with autism potentially have great contributions to make to society, and we’re beginning to see organizations, schools, businesses and otherwise seeking out and hiring people with autism for those characteristics. So, when I interviewed for my job at Adelphi University, they’ve done their research, and there was a very good and refreshing interview, because instead of me disclosing that I have autism and trying to convince them that this is why you might want to hire a person with autism, than someone who doesn’t have autism, we could just focus on the aspects of the job and whether I was suitable for the position. We see other organizations, such as SAP, which is a big software company that is now collaborating with Specialisterne, which translates to the specialiStS in Danish, and together they’re hiring people with autism, they are seeking people with autism, because of the skills they have in information technology. I believe, we’re just getting to the point now where society is beginning to realize that there are some strengths that people with autism have that could be very useful in an employment situation.

SS:Professor, just really quickly – what is the most common, the biggest misconception about autism? Just in a nutshell.

StS: I believe that the most common misconception about autism is that people with autism do not want to interact with others and do not have emotions. In my communicating with my colleagues on the autism spectrum and meeting hundreds of people on the autism spectrum, number one, I find that we have emotions, just like everybody else, and that we do desire to interact with others. I believe that myth may stem from that those of us with autism, because we interact differently and communicate differently. Many of our social interactions end up in a failure, sometimes catastrophic failure, and if anybody had the same amount of failure in attempting to successfully socially interact, then maybe they too would give up on interacting with others.

SS:Professor, thank you so much for this amazing insight into the world of autism. We thank you for the interview; we wish all the best with your research. We were talking to Dr. Stephen Shore, autism researcher, lecturer, author, diagnosed with ASD himself, talking about where autism comes from, what it stands right now in the world and how autistic people should be integrated into society. That’s it for this edition of Sophie&Co, I will see you next time.