How did you know you had Asperger's? originally appeared on Quora -- the knowledge sharing network where compelling questions are answered by people with unique insights.
I don't know [when I knew I had Aspergers]; probably at the beginning. I was still quite young (about 7-8 years old) and I already noticed that I was a Stranger in a Strange Land. To me, human interactions were befuddling, to say the least. I never could understand why people interacted the way they did. I tried a lot to predict people's reactions to so many situations and I failed in most cases. In particular, I failed at understanding and anticipating reactions to me, be it to things I said or things I did, or conversely, to those I did not.
My teachers said I was very "precocious," but at the time that didn't make sense to me. I thought everybody was like me, except that I lacked something that prevented me from understanding them as they seemed to understand each other. I started feeling inadequate --despite my teachers and parents telling me I was all right. The feeling has continued to nag me to this day, although it later subsided somewhat.
Feelings of inadequacy notwithstanding, I dedicated my time to the only thing I knew I did well -- even better than most anybody else I knew: learning. I breezed through elementary and high school, essentially with straight A's (minus some mind-numbing classes on topics I decided would be better if they never touched my mind). I finally got to go to a university where everything started to change.
After deciding I would dedicate myself to learning (which I did), essentially to abscond myself from my feelings of inadequacy and befuddlement, I crashed head-on, unprepared, into a completely different environment about which I knew nothing and had nobody that could help me navigate it. The university is very different from school, be it elementary, middle, or high; human interaction is practically mandatory, and everybody essentially forces themselves unto you. They want to talk to you, they want you to talk to them, they want to hang out with you and have you hang out with them. In a word: they want... And I couldn't, at the time, understand what the heck they wanted from me -- I tried to accommodate them, but more often than not, it all blew up in my face. For the first time in my life I started having what I now know are called meltdowns. I got really scared.
I spent some months with a therapist who finally assured me that I was all right and just had (a series of) panic attacks. It did little to nothing to allay my concerns, so she prescribed me a mild antipsychotic for a couple months, and sent me away. As befuddled as ever, but now also more scared. I decided then that I would do what I always did and that had worked so well for me in the past: I would take things into my own hands, learn as much as I possibly could -- no matter how long it took -- about whatever it was that was happening to me. I would try to figure out what was triggering the response and stay the hell away from whatever it was, and for good measure, keep some distance between me and the throng of noisy, wanting people.
That was in the mid-70's. I had a few more meltdowns, and eventually figured out that the trigger was an excess of people being incomprehensible and befuddling me to the point I got overwhelmed and somehow automatically shut down as a protective measure. I have few clear memories of these events, other than what those present during them told me. I had no way to verify their veracity, or even if they were exaggerating. Be it as it may, I decided to focus on those events and minimize them as much as possible. I became essentially a hermit, allowing very few people to be near me and interact with me. Some of those few I still call good friends even after all these years.
Fast forward 25 years. It's the early 90's, I have a career that allows me to support myself and my aging mother (my father having passed 5 years before). I never intended to be a successful entrepreneur, and in fact I am not; humans still befuddle me no end, despite my many efforts, and entrepreneurs cannot be befuddled by humans if they want to be worthy of the name. Nevertheless, I couldn't complain. I earned enough to have a good living and travel, go to conferences that interested me, and so on. I organized my life around what came most naturally to me -- computer science -- and had the good fortune to be there during some of its halcyon days. I was reasonably well known, and various kinds of work offers landed at my feet, without even looking for them. One of those turned out to be very important in this story of self-discovery.
I was asked to be CTO of a startup based in Charlotte, NC. They were just out of their second round of funding and were developing some voice and network communications technology. They heard of me and essentially snatched me to lead the next level of development of the technology they had developed. After some soul searching and pondering, I accepted. I had to relocate there, from my country of birth (Venezuela), and follow all the mandated immigration and labor rules. Luckily for me, the company retained a nice, very experienced lawyer to navigate those muddy waters. It was due to this that I entered contact with Duke University in Durham, NC, due to the need to validate my studies and experience in order to get a Green Card and stay in the USA.
To make an already too long story somewhat shorter, the CS Department at Duke--pending some formalities and testimonials--granted me a Honorary Ph.D in CS and AI, and was willing to waive some transcripts to get me started on a degree in Neuroscience (after I told them of my interest and what I had studied regarding that field). It was during the following years that my contact with Duke bore fruit: I was invited to a symposium on Autism and Asperger's, organized by a student of Simon Baron-Cohen. This was a big eye opener: I suddenly understood so many things in their proper context. I got a possible name for my condition (I still thought of it as a defect--a flaw): Asperger's Syndrome.
I tried to get myself evaluated and diagnosed, but I was told that few (Neuro) Psychologists were trained to perform such tests. None were readily available, but one of the researchers pointed me to a test developed by Baron-Cohen himself. It was not a complete diagnosis, but had a very good track record to predict the results of an actual diagnostic. At the time it was a paper and pencil test, but now it has been remade into an online test: see Take the Asperger's Test. I took the test, and the results were so clear that there was no doubt I had Asperger's Syndrome.
I finally knew something about myself. And as they say, knowledge is power. I started studying as much as I could about the subject, reading everything Baron-Cohen wrote about it. My neuroscience self-studies were coming very handy, as I could not only understand what the papers explained, but could also follow the alternate views and opposing opinions until I formed my own understanding of myself.
That was 1997. It took 10 years to finally get a medically validated diagnosis. Not that I needed it, but it is good to know somebody that purportedly knows his or her stuff agrees.
It's been a (very) long road going from there to here. But I finally can lay to rest the fear and sense of failure that accompanied me (and in many ways crippled me) since I was a small kid. I finally know I'm not defective in any way: I'm different--and it is good to finally know that I was right all along: I'm a Stranger in a Strange Land. A land that was made by Others for Others to accommodate Others. I'm not like them, but I do not reject them, dislike them or shun them--I would like a different land made for me, but I know there's only this land we all share.
That's okay with me.
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