Autism Awareness Month tends to bring out a lot of people talking about autism who aren’t autistic—advocacy organizations, parents, celebrities, and, well, bloggers like me. Of course, parents of autistic children do need support and information. Some even discover the signs of an autism spectrum disorder (ASD) in themselves when their children are diagnosed, as happened to recent TS interviewee Dana Howell. And of course, advocacy for autistic people and autism research is in and of itself not a bad thing.
But…
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I was diagnosed with Aspergers some years back, and while there are times when I question the diagnosis, thinking back on my childhood tends to lead me to think that the diagnosis is probably correct.
As I have gotten older, though, I have learned to cope with things well enough that I usually don’t attract much attention to myself (though I sometimes am overly shy, or over-compensate and become obnoxious), and so I rarely bother to let people know about this – the tendency for them to either get weirded out or to try to convince me that I don’t have the condition because I function quite well in day-to-day life makes telling people what’s what more trouble than it is really worth.
After I was diagnosed (and that diagnosis explained quite a bit), I decided to try seeking out the ASM communities and see what they had to offer. I found that the community, much like other sub-culture communities that I had encountered, tended to be rather self-referential, and didn’t necessarily reflect my experience. In large part this is likely because it was composed largely of younger people who had lived in a world that was increasingly recognizing and better handling issues like Aspergers, while I was older and had grown up in an environment where I was simply dismissed as mentally deficient – even I didn’t know why I couldn’t fit in and why I had social problems. My experience of life was radically different.
One of the things that I really want people to grasp is that ASM disorders are not simply childhood issues – I have often had people who knew me as a child inform me that I outgrew it and became “normal” (no, I simply learned to cope with my issues, but they’re still there). I have been professionally successful (completed a research-based Master’s Degree, have a good career working in historic/archaeological preservation), but I continue to have struggles in my personal life (trouble making friends, difficulty with traveling, trouble with romantic relationships, etc. in my mid-30s, I’m just now beginning to have experiences that most people have in their early-to-mid 20’s).
That’s a good point, about the focus being on childhood. Until I started meeting more adults online who told me they were autistic (perhaps because it’s easier to share that information with people online in certain contexts), I definitely associated autism with children. I wonder now how many people I know in real life who have Asperger’s but don’t share that information (for reasons similar to yours).
I’m aware of a few of the forums out there, such as Wrong Planet, but it never occurred to me that they would be skewed more toward younger adults with a different experience. I wonder if this might change as more adults are diagnosed later in life, which seems to be happening more frequently.
The most common, and personally hurtful, misconception is that we lack empathy. I’m on the spectrum, and my son and my niece have been diagnosed with Aspergers. From my perspective, what may be perceived as a lack of the ability to recognize the feeling of others, or of the ability to read social cues – is, for a lot of us, being overwhelmed by them, not misinterpreting. Also, I think that the extreme discomfort with face-to-face, eye-to-eye conversations is, again, just being overwhelmed by all the sensory and social input that comes with that. Call it processing time, maybe, for me. People speculating on why we’re so ‘off’ in social situations seldom seem to see this central reason.
For me, it definitely is a difficulty in reading social cues, rather than simply feeling overwhelmed by them.
The discomfort with eye-to-eye contact always caused trouble – in order to be professionally successful, I have had to train myself to look people in the face. I recall, though, that as a teenager, I would always look down at people’s shoes, which, when I spoke with girls, usually was mis-interpreted as me staring at their chests, which of course added to the social awkwardness.
For me, it definitely is a difficulty in reading social cues, rather than simply feeling overwhelmed by them.
The discomfort with eye-to-eye contact always caused trouble – in order to be professionally successful, I have had to train myself to look people in the face. I recall, though, that as a teenager, I would always look down at people’s shoes, which, when I spoke with girls, usually was mis-interpreted as me staring at their chests, which of course added to the social awkwardness.
It’s such a broad spectrum. The discomfort, for me, manifests more like an anxiety attack.
And I feel ya on the ‘misinterpreted as staring’.
It’s such a broad spectrum. The discomfort, for me, manifests more like an anxiety attack.
And I feel ya on the ‘misinterpreted as staring’.
As a disabled person, but not on the spectrum, I consider myself an ally to the Autistic Self Advocacy Movement, so this post is just meant as a FYI. For those who haven’t heard of the group, the Autistic Self Advocacy Network has done some great advocacy work to both advance polices and dispel myths. It has been involved with the larger disability community for awhile now. The organization is run by and for people on the spectrum. It’s website is http://www.autisticadvocacy.org/
this is really amazing!