Sunday, May 18, 2014

Nonverbal Girl's Individuality Revealed Through Typing

There's a particular video that was sent to me, asking for my thoughts about it. It's about an 11-year-old nonverbal autistic girl that has learned how to type. You may have seen it, or if not this particular one, some story like it. Here it is if you haven't seen it:

The first thing I notice is also the most obvious. Carly Fleischmann is an intelligent young girl, who simply had no ability to express that intelligence for most of her life. This is a phenomenon that we're seeing a lot these days. Many so-called “low-functioning” autistics have found alternative ways to communicate with others, and in doing so, have revealed an intelligence that is often above the normal range.

This story, and others like it, are almost an embodiment of the phrase “not being able to speak is not the same as having nothing to say.” Every one of these people that comes to public attention has something to say. They all appear to want it to be known that they are complete human beings, with feelings, and want nothing more than to be able to live a happy life. I find it heartening to see that people are listening.

I think this phenomenon also calls into question the validity of describing these individuals as being intellectually disabled. Carly is able to express her thoughts clearly and articulately through typing. But I think I can extend this point even further than that. If you're reading this, it's likely that you know at least one autistic person, if not several. Ask yourself, have you ever met an autistic person that you could definitively say was less intelligent than the average person? Or were some simply unable to express themselves enough to be seen as intelligent people. I can't say that all completely nonverbal individuals are highly intelligent. Only that it makes no sense to assume that they're intellectually disabled.

Another observation was specifically mentioned by Carly's father. He realized when she started typing that when he used to talk about her as if she wasn't there, that she could understand every word. This should always be assumed. It always saddens me to hear people talking about their family members like this, right in front of them. No one likes to be talked about in their presence. Even if the person does not understand what is being said about them, it does no harm to treat them with this kind of human dignity.

This leads to one more point that I would like to say. It's something I see in other stories like this, as well as the differences between “low-functioning” and “high-functioning” individuals, though it's rarely talked about. I saw a distinct difference in how Carly was treated by her parents before and after she started typing. Look back at the video and see if you can see it. She was being held down and restrained while screaming and flapping before.

Before anyone jumps on me for blaming parents, I do understand the desire to protect her from harming herself. However, I'm not sure how much danger there is in that happening to begin with. When I've done things like that in the past, the best thing to do would have been to simply leave me alone and let me calm down on my own. Trying to hold me down and stop me from hurting myself would have only made things worse.

Back to the video, you might have noticed that after Carly began typing, her parents were forced to think of her as a teenage girl. When that happened, they started treating her like a teenage girl, and she started acting like a teenage girl. People do tend to be products of their environment.

I have some personal experience in this area as well. I used to work with someone who, for a solid month or two, treated me like I was low-functioning, and made no secret of the fact that she thought of me as Rainman. What happened was I started closing in on myself. Not just at work, but everywhere. I felt like I was becoming more low-functioning. I learned later that other people that had nothing to do with my job were noticing as well. This is at odds with every other stage in my life, when I've been treated as a functioning human being, and I've been able to live up to that.

The final point I would like to make here is that I feel that a person's level of functioning is much more fluid than is commonly believed. For this reason, I feel we have little need for two terms that I've used here: low-functioning and high-functioning. Just remember that when you see a profoundly autistic person, remember that there is a fully-fleshed out human being in that body, and treat them accordingly.

Thursday, May 8, 2014

The Wallflower and the Butterfly

One of the biggest hurdles for people with ASD ( Autism Spectrum Disorder) is social interactions. For me, its a especially hard as most of my life I have been around “normal” folk who have no trouble talking  to others. I am rather a good speaker and can be articulate but I’m not one who can easily approach others  and strike up a conversation.

I recently went to a day long aikid instructor’s class, where over 40 people were in attendence, most I knew from years of  classes and camps and yet I still felt like an outsider. At lunch I sat in a corner alone at a table. While we waited for the afternoon session to start, I stood alone while everyone else chatted. I don’t normally notice this isolation as I’m used to it but since my diagnosis I have become more aware of  how often it happens.

Mind you this is with people I know. I sat in the front seat on a recent car tripwith someone I’ve known for years, and we barely exchanged words. However, on the way back another person sat up front and the two chatted away. So does she prefer the other person’s company or I am a poor conversationalist? It’s hard for me to tell.

I try to improve my social skills but it’s a struggle. I fret awkwardly, trying to go beyond small talk--which I'm terrible at and wonder how dull or boring I sound. Every social encounter  is scrutinized, analyed and graded as a success or failure. Did I monologue? Did I stay on topic subject or dominate with one of my fixations? How well did I reciprocate ? Did I show interest in them or just wait impatiently until I could babble on.The stress is considerable.

I’m reminded of  what John Elder Robison commented in his memoir “Look Me in the Eye.”
“ Many descriptions of autism and Asperger’s  describe people like me as “not wanting contact with others” or “preferring to play alone.” I can’t speak for other kids, but I’d like to be very clear about my own feelings:  I did not ever want to to be alone . And all those child psychologists who said ”John prefers to play by himself” were dead wrong. I played by myself because I was a failure at playing with with others. I was alone as a result of my own limitations, and being alone was one of the bitterest disappointments of my young life.”

I understand that all too well. Just because  I’m not good at interacting doesn’t mean I don’t want to and the pain of loneliness is as powerful for someone with ASD as it is for anyone. So should you see me --or someone you know  with ASD at a gathering , please come over and talk , I crave conversation too and will appreciate the kindness of your company.

Sunday, May 4, 2014

The Myth of the Autism Epidemic

It's no secret that the rate of autism diagnoses has risen dramatically in recent decades. In the 1980s, it was reported that only one person out of every 2,000 were autistic. The current estimate is one in 68 people are autistic. Looking at those numbers, it's only natural to assume that there is a massive epidemic of a once rare condition.

The problem with this line of reasoning is that it assumes that the rate of autism diagnoses is the same as the rate of autism occurrence. To put it simply, it's like the classic question asking the world's highest peak before Mt. Everest was discovered. Anyone familiar with this question will tell you that Mt. Everest did, in fact, exist before it was discovered. I am submitting that in a similar way, autism did not actually become more prevalent. It's simply more recognized.

It's well known that in recent years, professionals have learned a lot about how to recognize autism. It really should come as no surprise that when you know how to find something, you are likely to find more of it. In addition, there are a lot more autism professionals. Many of them have moved into areas that have not previously had autism professionals. Again, when you have more people looking for something in more places, the prevalence will probably appear higher than it did before.

We might also look at what autism was seen to be in the 1980s compared to now. In the 80s and before, a person would have to be completely nonverbal to be considered autistic. The definition has changed considerably since then. There are now people receiving autism diagnoses that most people would see only as being weird or eccentric. Remember that Asperger's is also considered to be a form of autism, to the point that the American Psychiatric Association has recently redefined it as mild autism. This change in how we define autism has, just by itself, contributed hugely to the perceived increase.

I think I can further demonstrate my last point by saying that there are studies showing a similar autism rate among adults. I can remember reading one a few years ago that looked at a random sample of adults and tested them for autism under current (at the time) diagnostic standards. The result showed a rate just below, but not statistically significant from, the autism rate seen among children at the time. Further, many of you reading this probably personally know one or more undiagnosed aspies. These are people that would have received diagnoses as children, had the definition been the same as it is now.

Another thing of note is that as autism diagnoses increase, some other diagnoses have actually been known to decrease. This indicates that some conditions are being increasingly recognized as autism. I feel that there is likely to be a certain amount of misdiagnosis involved in this phenomenon. Either some conditions have been recognized as separate when they are actually a different form of it (such as Asperger's), or some are now being recognized as autism when I don't feel that they should be (such as childhood degenerative disorder).

One more point is the evidence of autism existing in its current form throughout history. It's almost cliché to refer to such historical figures as Albert Einstein and Thomas Jefferson as likely being autistic. It is true that that is pure speculation. I won't go very deep into the evidence of it here, but what I've seen is certainly compelling. They tended to exhibit speech patterns and thought processes that are common in autistic people. Anthropologists have even pointed out that cave paintings from prehistoric times appear very similar to drawings made by modern day autistic “savants.”

I know some may point out all of the research that has been put into finding a cause of autism. This research has yielded consistently inconclusive or even negative results. I think it's safe to conclude that autism is genetic, and has existed throughout human history.