One of the trickiest aspects of discussing or writing about the autism spectrum is that there is so little we can say about "people with with autism" that holds true across the board. People with autism are highly intelligent and intellectually challenged; they are hyper-verbal and non-verbal; they are ultra-sensitive to light and sound or less sensitive than most. Some are savants; most are not. Some are subject to a wide range of physical issues, others are perfectly healthy.
Even when we talk about what people with autism have in common - delays and challenges in social interaction and communication - those commonalities run the gamut from slight to absolute, and look different in almost every case.
In order to write about or discuss autism, though, we have to say SOMETHING - and over time, certain "truisms" about autism have been shared so often that they're assumed to be universally accurate.
The problem is, they aren't.
Recently, I was reading a book that described people with autism spectrum disorders as systems-oriented, mechanically inclined, good with machines and computers, and unable to think creatively. Of course, this is true some of the time: SOME people with autism are indeed terrific with machines, computers and systems - and rotten at creative expression. On the other hand, however, my son has little interest in systems, machines and computers - but enjoys writing poetry, making up stories, and improvising on the clarinet.
I've heard over and over that people with autism are visual learners - and, in fact, entire classrooms are set up on that assumption. The problem is that while SOME people with autism are visual learners, many are actually kinesthetic, mathematical, musical or naturalist learners. As a result, the very classrooms set up for their "special needs" ignore their actual learning styles!
Lists of "best careers for people with autism" focus assume a lack of creativity and focus almost entirely on use of machines, repetition and close observation (lab tech, stockroom worker, library staff, database management, etc.). Yet many people with autism have made a name for themselves as writers, public speakers, photographers, artists, musicians, designers, and even inventors.
I haven't come up with a useful way to actually describe "people with autism spectrum disorders," as I honestly believe such a description would be as tough to manage as a description of "women" or "men." That is, people with autism are radically different from one another, though they do have a few describable commonalities.
As I've said before - and will say again - I believe strongly that the autism spectrum is made up of many discrete groups, whose characteristics vary wildly. By looking for an "average autistic" to describe, I think we're acting against the best interests of a large and fast-growing group of individuals. People with autism are no more "all visual learners" than women are "all empathetic" or men are "all logical thinkers."
People with autism are different from one another - and I say "vive le difference!"
**claps**
~Corina Becker
autistic adult
No Stereotypes Here
My daughter (AS) is for the most part very similar to neurotypical girls of her age. In those areas where she is different, it doesn’t seem to be an aspect of autism, I tend to think of her as being truly unique. The funny thing is that when I blog about her uniqueness, it is always those posts where adult females on the spectrum comment that she is just like they were at her age. Perhaps we’re all unique, like everyone else.
I read this morning, and I’ve read elsewhere over the last few weeks, and I’ve had a few teachers tell me, that there is some hummming going on that the epidemic may be over. The reduction of thimerosal may have stopped the epidemic, leaving us considerably fewer new cases, perhaps those genetic cases , the recipients of H1N1,and those with in uteros exposures to mom’s amalgams. The woman this morning on aoa said “hard to fill the seats with anyone under seven”, two teachers told me , no autistic children in their kindergarten classes for the first time in 15 years! Anecdotal , of course, and of course I wonder if this is going on everywhere or a fluke.
If “autism” is defined by expression, not etiology, then there should be a “standardized criteria” to qualify for the diagnoses considered part of the autism spectrum. That we are grouping so many people, with such disparate traits, together under one diagnostic category indicates how flawed the category likely is.
We either need to refine the definition or it will continue to expand endlessly until there’s no limit to what is “autism.”
The half-dozen (or more) official labels applied to me changed every few years. By that logic, I was one fewer data point as I left a category and one more data point in the new category. This demonstrates the limits of descriptive diagnostics.
What I or was I not ever “mentally retarded,” “seizure disorder,” “ADD/ADHD,” “brain trauma,” and so on? Am I even “autistic” or will that be changed in a year or decade?
I had a parent tell me her “autistic” child was now diagnosed with some other disorder. She seemed pleased until she read about the new label — oops, it was “worse” in her view. New label, new problems. I can state from experience that teachers do change how they treat a student based on labels.
I have stated before, until we improve our etiological diagnostics, we are flailing about, trying to understand differences that defy easy comprehension.
When “and” become “or” in the first DSM-IV editions, diagnoses of autism increased dramatically. The IV-TR included a correction, but by then autism was being taught to future clinicians with a liberal (more inclusive) definition. No telling what happens with DSM-V, but it will surely be more confusing not less.
Well, the thing is, is to have an autism diagnosis that child needs to fit so much criteria. Of course that criteria doesn’t account for who is diagnosing, or for progress as the child learns and progresses and get’s older. The autism spectrum is might be made up of many discrete groups, but at one time they had to fit one group. I think autism kids confusing later on when the expectation is that a child with autism will always have severe impairment in social interaction, will always have severe impairments in communication, will always have severe repetitive and stereotyped patterns of behavior, interests and activities. Those discrete groups are the products of interventions.
hmm..I think testosterone is linked to more a more systemizing way of thinking, and women with less have a more empathetic way of thinking. This basic knowlege my give a clue to the “over-systemizing” that is representative in many boys with autism, and their lessened ability to use empathy in recognizing social clues and being socially receptive. Surely the boys outnumbering the girls must give a hint to testosterone playing a huge part in this.
Barbara – certainly there has been plenty of speculation and some research relative to testosterone.
My point, though, is that while SOME people with autism do fit that over-systemizing, technology-loving, unimaginative mold, MANY do not.
Again, IMO, there are almost certainly multiple groups represented under the ASD umbrella. It wouldn’t blow my mind if one group (the systems, math, computers group) turned out to have high testosterone while another group (perhaps the over-emotional, dramatic, artistic group?) turned out to have quite a different set of physical differences.
Lisa
Etiology, etiology, etiology.
Why do we care? cause the label is what allows teachers to pre-determine lesson plans; it allows insurance companies to decide whether or not to pay claims; it allows some people to claim they have the cure, and others to deny any need for a cure… etc.
If the cursed gate-keepers require labels, let them at least make those labels meaningful! or pursue a much more rational approach: providing what’s nneded as needed.