Diagnosis

Lately, people have been asking me about my informal diagnosis of ASD.  Unlike many adults, who experience their own diagnosis as empowering, I was devastated. Let me explain. As a teenager, all I ever wanted was to be invisible inside a crowd, and to some extent I succeeded. I recently attended a high school reunion from my school  – it wasn’t my year but mine was invited to one of the events.  I knew a couple of people but the majority of them were strangers to me – all of them.  And I was a stranger to them. Many knew me only in the context of my ex-husband’s memoir, “Look Me in the Eye.” I guess I was more successful at vanishing than I remembered.  Invisible, I was never a part of the group. I only had a few places where I felt comfortable in high school – in the AV Club and in my gym class, but the reasons why the typical place for trauma – gym class – was a place for comfort is another story – the nickel version is, it was a unique co-ed class that used “Outward Bound” as its model, so we did a lot of teamwork exercises instead of calisthenics. 

After high school, once I decided that invisibility was preventing me from any success, I started to be more outgoing, which was very difficult; my problems with recognizing others was certainly a handicap. I did my best to blend in – I tried to be social, chatting about inconsequential things as well as important issues. I thought that I had finally achieved “normalcy.” I made friends and tried very hard. Still, I was informally voted the geekiest teacher at a high school known for peculiarity.

The avalanche of awareness finally caught me – John asked me to participate in Simon Baron-Cohen’s longitudinal study of family members of people on the spectrum. Since Jack had been diagnosed at this point, I was needed as his mother. I logged in to the website and started answering questions honestly and to the best of my ability. I grew more and more uncomfortable as the instrument progressed. For the first time, the totality of what I had always considered “my quirks” was laid out. I couldn’t finish; I cried out, “I’m fucking autistic!” 

At first, I cried hysterically, then gradually acquiesed to the unacceptable. I blew my nose on some tissue (Puffs Plus, the only kind I like) and wiped my smeared glasses on my shirttail (all-cotton, of course).  I’ve done the same things every time emotion overcomes me, for whatever reason. Sometimes, the hysterical crying takes longer and is smearier. After a little while, I finished the survey. The results came quickly and were exactly what I now knew but feared; I was on the spectrum (but not officially diagnosed they warned – they don’t diagnose from this single albeit extensive survey but my scores were highly indicative of one who qualified for such a diagnosis), and did I have any family members who might also be willing to complete the survey? I called my brother, Ed, and asked him, me still sniffling, eyes leaking. He agreed, so I gave his contact information. An hour later, he called; he was one, too, and his scores were, if possible, even more indicative than mine! This gave me a little comfort; misery really does love company! We chatted for hours in the middle of the night - he lives on the west coast so it wasn’t so late for him.

In the aftermath, it took me months to be willing to start talking about it with others. I was immediately dismayed. My friend, Amy, said that she’s known for years but knew that any comment would only upset me, so she had kept silent. Matt said that he, too, had been diagnosed. Bill said his son had a formal diagnosis and he had an informal one. Apparently, most of my friends are on the spectrum, too - like has attracted like (or we just don't notice the traits that annoy neurotypicals). John told me of, the previous year, giving a book reading in Oregon. Ed came to the reading; a lady asked John if I was also on the spectrum. He referred the woman to Ed, as a brother would be more of an expert on me, who stood up and nodded. I was devastated all over again.  I thought that I had fooled everyone into thinking that I was “normal”. If my act hadn’t fooled anyone, was my life a failure? Rather like when my clothes got tight and yet I refused to consider that I might have gained weight, the only one I’d successfully fooled was myself. 

For me, knowledge was not empowering but it was undeniable. In the last few years, I’ve had to face some hard truths. I’m fat. I’m in a world that isn’t interested in hiring someone with my odd skill set. I’m female when most of the people who share my interests are male (and suspicious). I have chronic digestive problems. And I’m on the autism spectrum. The first, I might someday succeed in conquering, but the rest is just me. I’ve had to accept it – good and bad - or I would end up hating an integral part of myself. THAT is unacceptable. I don’t HAVE autism, I AM autism, just like I’m female. For me, trying to change those aspects would be mutilation. I even accept the visible scars on my body from my digestive battles. They are the outward symbols that I continue to survive. Eventually, the Truth will set you free.

Autism Spectrum, Prosopagnosia, and Empathy

I'm surprised to discover that I haven't blogged for almost two months, after blogging almost compulsively in September. I've gotten a couple of part-time jobs and am now pretty busy all of the time, either driving or working or thinking about the various tasks I have to perform. Still, I find myself needing to blog. Here's my latest thoughts.

I didn’t want to accept that I was on the autism spectrum. I hated the very idea of it. Come to think of it, my recent reaction to the gastroenterologist’s conclusion that my year-long bout with diarrhea was probably the result of gluten intolerance was remarkable similar to my realization that I was on the spectrum - a lot of tears and anger, followed ultimately by reluctant acceptance.

                This is what happened.

                John asked me to complete an online questionnaire for the Cambridge Autism Research Center, headed by Simon Baron-Cohen. John wanted me to complete it as he had done so and had referred Jack (one purpose of the study is to track the incidence of autism spectrum in biological families). Since Jack has also been diagnosed as being on the spectrum, John wanted me to fill out the questionnaire as Jack’s mother. I followed the link in his email, filled out my complete contact information, and started answering questions.

                I was immediately struck by my responses to a number of the questions. I knew how “normal” (neurotypical) people would answer them but I had to be honest – and my answers didn’t look at all “normal” to me. There were three different test instruments, each about sixty questions long. As I considered the totality of my answers, I grew more and more uncomfortable. Although I was alone in the house and sitting at my desktop computer, I suddenly cried out loud, “I’m fucking autistic!” and burst into tears. I sobbed uncontrollably for a few minutes, then wiped my face and blew my nose. I finished the survey and the results came immediately.I wasn’t surprised.
                Although not an official diagnosis by a trained psychologist, the response said, there was a strong probability that I, like John and Jack, was on the spectrum. Was I willing to give contact information for my siblings and/or parents? I cried some more. I thought about my immediate relatives as I found a box of tissues in the bathroom closet. My mother was no longer capable of responding to such a query so I didn’t put her down. I did give contact information for my sister, Karen, and my brother, Ed. Karen opted to not take the survey. Ed did and, shortly after, he emailed me with his scores – they were even lower than my own. He was also probably on the spectrum. I felt better immediately. Misery loves company.

                Despite the time (it was after midnight EST) I immediately called Ed to discuss the survey. I was still very upset. He wasn’t surprised by either of our sets of scores. As we chatted over the next three hours, we discovered that we also shared an inability to recognize or describe the physical appearance of others. I’ve since discovered that lot of others, although not everyone, on the autism spectrum share this “face-blindness.” Oliver Sacks discusses it at length in his book, “The Mind’s Eye.” He gave it a $500 name – prosopagnosia. I had always thought that I was defective and that I had to hide my inability to recognize people. I thought I was alone with this handicap. Now, I wasn’t the only weirdo in the world. It’s amazing how sharing either a gift or a deficit can raise your spirits – and it wasn’t merely company for my misery – it was the knowledge that this essential part of me isn’t only mine, exclusively - that i wasn't totally wierd! I’d always tried to disguise it and now, I didn’t have to! I can say it - I have prosopagnosia.

Actually, I’ve got a better face-memory than many others with face-blindness – although I can never describe the appearance of anyone that I haven’t (explicitly) verbally described while they were in front of me, I can still recognize the people that I see on a regular basis. I can even remember a lot of these people years later, although I can’t put names to them. If I’ve gone to the trouble to remember someone, I really remember them! I just have trouble entering them into memory in the first place. I rarely remember people’s faces until I’ve met them multiple times (or taken their photograph and studied it). I’ve been unable to distinguish people that I’ve worked with for an entire day on the following day unless I’ve used my own methods for remembering them. I CAN remember them; it's just very hard work.

Empathy

I have trouble with Simon Baron-Cohen’s assertion that people on the autism spectrum have little or no sense of self – for example, that they do not understand that others do not share their knowledge. I have certainly been guilty of this but there is usually a good reason for my assumptions. I was utterly amazed that the crew of the Learning Channel’s program thought that how John thinks is unusual – I tried to explain that many of my acquaintances and members of my family have similar ways of understanding but they didn’t want to hear it. 

Since it was unusual to them, it MUST be extraordinary. I tried to explain that normal is only the average of your personal sample  of the people that you typically encounter – but my sample is not the same as their sample. My sample is probably not representative of the population. If you lived in a town with a high number of functional mentally retarded people, you might think that any degree of creativity is extraordinary. My sample is from the opposite end of the spectrum, so my assumptions about what “most” people know is reasonable, given that most people of my acquaintance are people of considerable talents. 

Most people of my acquaintance DO share my level of knowledge! I know that others may have fewer opportunities to expand their knowledge base but, if I’m talking to them, it’s usually because they are my students and I’m supposed to help them to understand more and I am trying to push them to excel. Everyone has some culture shock when they encounter people who do not share their system of beliefs and common knowledge. Neurotypicals are not assumed to have no sense of self as a result of that culture shock!

I have the ability to put myself in another person’s position, commonly called empathy. I just have a very hard time trying to figure out what people are thinking on the basis of their visual cues. With my face-blindness, I have trouble with situations that require me to interpret complex visual data. Baron-Cohen would not call a truly blind person non-empathic; why am I considered by him to lack empathy because of my visual deficit?