One Year Later

It’s been about a year since the school and pediatrician determined that Rosie’s autistic, and I at least seem to have gone through the process I expected. I knew there would be a wave of assimilation and identification with the new reality to go through, perhaps some anger… stages in the process. And so there has been, but I feel lately as though I’ve come through it and am looking at it in a more matter-of-fact way, so I conclude that this initial period is over.

At first, there was the initial surprise and rejection that I know Rosie’s dad and I both went through – the whole family, in fact. How could her character traits and behavior possibly be labeled autistic? She was just like her dad and I, just a little more so. Following an intense period of research, we realized that of course the traits we shared were actually characteristic in their pattern, and Rosie and her autism became the lens through which we scrutinized our family. Rosie’s dad acknowledged that for some time, he had recognized that she was exactly like he had been as a child, but without identifying it as autism. Since his childhood had been traumatic, he had been trying to protect her, and most of all, not treat her like his parents had treated him. (In this, he has been profoundly successful.) It took me longer to realize that my own childhood traits followed a similar pattern.

Looking at my wider family, for a long time, I had already been aware that the men in my father’s family had something a little odd going on that usually landed them in a great deal of trouble around adolescence. I had actually looked at the autism criteria several times over the years with my brother in mind, but kept dismissing it since his traits weren’t strong enough to be classic autism. Plus, my brother is athletic and I thought at the time that all autistics had motor control difficulty. I found autistic traits in so many of my relatives that I started to worry that I was overapplying the criteria and seeing everything as relating to autism. However, even with a cooler perspective, I can see that the pattern of traits is still there. It’s as much a part of my family’s genetic heritage as our shared bone structure or blood type.

In seeing autistic traits as part of a continuum of human behavior, I went through a period of anger at the way the rest of the world viewed autism that told me that I was identifying pretty strongly with it. I’ve always had this me vs. them resentment; in some ways, this was just another way to fuel it. I don’t think that this anger is over, to be honest, only that this week I’m not feeling it.

This week, this is what I feel: so what? Autism explains my eccentric family. Some of the family members have a diagnosis, some are not about to go get one, some are misdiagnosed, some are subclinical for Asperger’s and are only missing a trait or missing a matter of degree. To my knowledge, no one has a diagnosis of classical autism. Same for my husband’s family, and same for several other families I know where one or more members have an Asperger’s diagnosis, though classical autism pops up in other families with this pattern. To me, that is really a strong indication that the autistic pattern, in humans, is effing normal. It’s part of the range of possible characteristics, and once enough genetic research is done, we’ll likely find that there are other patterns of characteristics other than autism that are triggered by strong genetic combinations or by external factors, too. So… so what? Let’s just get on with being brilliant, and weird, and obsessive, and cranky, and antisocial.

3 Things to Think About

I am surprised, again. (By so many things, LOL, but here are the 3 for today.)

The other day, my older daughter failed to recognize her uncle, an aspie, in a public place even though she actually interacted with him. This was distressing to him, of course, but hardly less distressing to her! I related to her a couple of similar instances of my own; one where a programmer friend and I missed each other when we planned to meet, though we apparently sat next to one another while waiting; and reminded her of another frequent happening where my family members don't see me moving around the house, if I'm doing it when zoned out and intensely preoccupied. So today, in clicking through the links of a psych researcher in Wisconsin who is championing neurodiversity, I found a blog with a link reading "Autistic Superpowers: Invisibility." I clicked, and assumed it was referring to social invisibility or invisibility with regard to healthcare - something more political. But no, it was about exactly this phenomenon of being not present, or being overlooked...

http://aspergersquare8.blogspot.com/2007/08/autistic-superpowers-invisibility.html

The second surprise stemmed from an excited call from my father about a newspaper article that referred to measurable auditory processing delays being absolutely correlated with autism. He related it to his ability to take a continuous string of auditory input and process it accurately with a long delay period. I ran across a different article today that probably refers to the same research:
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=20307

Dr. Roberts and his colleagues have found a slightly different pattern in the magnetic activity from the brain in children with autism spectrum disorders (ASDs) than normally developing children. “Children with autism respond a fraction of a second more slowly than healthy [sic] children to vowel sounds and tones,” Dr. Roberts was quoted as saying.

No comment on that "healthy children" business. No, wait, I am commenting.

The third surprise was another article, reporting on an upcoming publication from researchers who claim that a low frequency magnetic field around the brain can relieve hyperactivity and sensory overload in autistic people. (Interestingly, reported in a business journal first. A marketable therapy, of course.)

http://www.bizjournals.com/louisville/stories/2008/12/01/daily12.html

“Our results are preliminary, but they show a great deal of promise in reducing the severity of symptoms that people with autism find most distressing without affecting areas in which many autistic patients are gifted,” Casanova said in the release.

While I'm relieved to some extent to see this researcher's sensitivity, I have to still consider symptomatic treatment with some trepidation. There are areas where people who are hyperactive and hypersensitive have powerful advantages - read any of the business research on hyperactive entrepreneurs, for example. I worry that overzealous parents will rush to desensitize children who could learn to manage and benefit from their gifts.

Not that I've achieved anything appreciably beneficial with my own sensory sensitivities. (Unless you count being able to smell rattlesnakes, which I think has been a definite evolutionary advantage for my genetic line...) I wouldn't want to desensitize even my hearing, though, which is what gives me the most trouble. It makes a lot more sense to carry earplugs and avoid painful stimuli.