Since April is Autism Awareness Month, here are some links to relevant posts worth reading:
At Shakesville, a guest post from LydiaEncyclopedia: Autism Acceptance For Autism Awareness Month:
Autism Awareness Month has been a thorn in my side for as long as I’ve been an adult. I am at heart an attention-seeker, so you would think having an entire month devoted to people like me would be a joy to behold. But that’s the problem behind Autism Awareness Month. It isn’t about me. It’s not about me—the autistic person. The entire conception of Autism Awareness Month doesn’t even revolve around autism, not the kind I have or the kind that anyone I know lives with. The ‘autism’ of Autism Awareness Month is a mysterious, esoteric, silent force, which magically swoops into the homes of unsuspecting families, and replaces regular, darling children with empty husks, ala the Changelings of ancient myths.
It’s not even entirely about the children who are these so-called “empty shells.” The entire focus of Autism Awareness Month seems to be divided between what sad, pathetic existences they must lead, and the potential for a real, neurotypical, normal child that lies just around the corner in the next type of chelation, cure, or therapy. Rather than shedding light on what autism is, Autism Awareness Month has served to cloud autism further in lies, half-truths, pity, and the tyranny of low expectations.
Also, a couple of the links dropped by the excellent Shakesville commenters on that post:
At Square 8, The ever-expanding list of neurotypical privilege.
(H/T codeman38)
At ballastexistenz, Hey, watch it, that’s attached!:
I am going to take cure to refer to removal of all things that have been defined by the medical profession, about my body, as disabilities, in the individual, medical sense that medical people make it. Some of the things I am about to describe may not sound like they are out of the ordinary. They aren’t. But at some point along the line, they have, in my life, become medicalized. For instance, certain particular genes generate things considered (in the medical/individual model of disability) disabling, but also a number of other things that taken alone would be ordinary. Since all those traits stem from the same genes, I have to conclude that they’d have to go as well, even the harmless or relatively ordinary bits. Cure, after all, does not pick and choose, it’s about removing all traces of the thing regarded as “a disability” medically. …
Cure means rearranging me on everything from the obvious physical level to the genetic level. Rearranging at the genetic level always entails surprises. Pull on one thing and you find it’s attached to ten other things you didn’t even notice and would never have predicted, because you didn’t know that gene dealt with all of those things at once instead of one tidy little thing at a time. Similarly, rearranging the brain and other parts of the body will always have effects you didn’t count on. This is what happens when you mess with systems that are complex and interconnected.
(H/T: KA101)
Finally, some interesting discussions of research:
At Cracking the enigma, How do siblings influence theory of mind development in children with autism?:
Research conducted in the past 15 years or so has consistently shown that children with siblings of a similar age tend to pass tests of “theory of mind” at a younger age than those without siblings. The implication is that the experience of interacting with siblings helps children to develop the concept that other people have minds and that their thoughts and beliefs are sometimes different from their own.
Children with autism typically struggle on tests of theory of mind. An interesting question, then, is what effect siblings have on theory of mind development in autism. Based on the literature on typically developing kids, we might expect siblings of autistic children to have a beneficial effect. We could even make a case that, because autistic kids may have fewer interactions with non-family members, siblings may be even more important than normal. Counterintuitively, however, a new study published in the Journal of Child Psychology and Psychiatry suggests that having older siblings can have a detrimental effect on autistic children’s theory of mind development. …
The authors speculate that well-meaning older siblings may over-compensate for the autistic child’s difficulties. By treating them with kid gloves, they may somehow limit their development. Younger siblings might be less likely to do this and so have a more benign influence. However, it’s not clear why having older siblings would be worse than having none at all.
At The Autism Crisis, Are autistic people lost in space?:
In one short paper, Elizabeth Pellicano and colleagues claim to demolish Simon Baron Cohen’s systemizing account of autism. They also conclude that autistics’ strong visual search and probabilistic learning abilities fail in large-scale space, ergo in the real world. …
Well first, it’s an interesting task, even if it’s not a visual search task.
But even if autistics totally failed (they didn’t, and search all you want again, but you will find no rationale in this paper for the drop-off-a-cliff thresholds pushed by the authors), this task doesn’t map easily onto the authors’ sensational claims. These include that autistics can’t find “shoes in the bedroom, apples in a supermarket, or a favourite animal at the zoo” ergo can’t achieve independence.
Of course I want a whole lot more data, or an excellent rationale (none is provided) for not reporting most of it. And numerous possibilities were overlooked. …
No one knows how autistics would have performed if given accurate task instructions (to take the shortest path, as measured by the authors, to the target). Maybe someone else can bring up motor differences, which plausibly are relevant to this “true-to-life” task. And I wonder how clear, for autistics, the task instructions were with respect to revisits.
Autistics should be notorious by now for noticing aspects of tasks that nonautistics don’t (fantastic example at IMFAR last year), and for exploring more possibilities than nonautistics (examples here and here). Writing this off as a bad thing, as autistics being lost in space or some dire equivalent, is shortsighted to say the least.
This takes some courage to write, so bear with me.
Coming from someone who’s
– a biology major headed to graduate school to get a PhD in neuroscience, genetics, or a related field to study a particular subtopic roughly related to the underlying biology of (including genetics and development) higher-level cognition and behavior
AND
-who’s not on the autistic spectrum
– who is hugely introverted
– who has been tested as profoundly gifted
– who has been accused of having Asperger’s syndrome by my extroverted mother more times than I can count (including by at least one psychologist, and PDD-NOS by a neuropsychologist; subsequent folks overrode these and concluded that at the time I was simply very bright and very depressed. I am no longer depressed, thankfully, although goodness knows I fit what some people like to describe as the Broader Autistic Phenotype, which strikes me as for the most part something constructed by militant extroverts. I do have a certain contempt toward those extroverts who accuse people who aren’t extroverted of having something wrong with them.)
and who’s encountered a number of people who actually do have Asperger’s and autism (including an extremely accomplished HIV researcher who has Asperger’s who I count among the people I look up to, and three high-functioning autistic members of a four-person family who are friends of my family), autism spectrum disorders inspire a flurry of complicated thoughts in my head.
First, the people who think autism is caused by vaccines are idiots. Everyone knows this.
Second, autistic spectrum disorders can and do often cause real problems for the people who have them.
Third, the conceptualization and diagnosis of these conditions is continually undergoing refinement and review, and is unfortunately bound up with a particular social context, in part due to the effects on social behavior of these conditions and in part due to the fact that psychologists are human beings – and all human beings come with their own repertoire of imperfections to some extent or another. These conditions, to me, signify how tenuous the line that separates mental healthiness, wellness, and/or optimal function from conditions that need attention is.
I think people with ASDs should be treated with compassion and patience, most importantly. Some of the things they have to deal with have a steep learning curve (I can empathize to a certain extent, as social acumen was something I picked up cognitively for the most part, and if how I did it was difficult I can’t imagine how hard it can be for someone on the spectrum). In addition, society for the most part is notoriously ignorant, impatient, and uncompassionate. An understanding of how this condition works, I think, will among other things give society ways to help people on the spectrum help themselves vis-a-vis successful interaction with everyone else and help everyone else successfully interact with people on the spectrum. (And the underlying biology of the condition is very, very cool- in my training, I would like to get a little exposure to research on ASD neurobiology, even though that’s not the subfield I ultimately want to go into. Which contrary to most people’s expectations tends to increase compassion for people who deal with it.)
I think society in general does a really bad job of dealing with personality differences, and subsequently finding the line between personality difference and actual problem. The line is also probably not so much a line as a gradient. I can’t say society is very good at simply thinking, either; there are very few people I’ve ever met who are terribly good at metacognition and emotional control.
I can’t say I agree with either of the extremes of the ‘debate’ – that autism is some big scary ghost that makes people hollow shells (people who think this make slime mold look like Einstein) or that autistic spectrum disorders are just a personality difference (considerably less idiotic, but there are major problems with this idea in a number of areas). My thoughts on this are somewhere in between, and far away from both of these extremes.
tl;dr ASDs are really complicated and people draw premature conclusions about them and they require more nuanced and mature thought than, apparently, the gibbering masses are able to give.
Janet — Are you pro-ana?
I agree with K over here completely. Istrongly believe our society needs to take a step back and look at how badly we treat those who are not “perfect.” First of all there is no such thing as a perfect person, and whose standard are we trying to strive for in saying all kids with autism are this that or the other? Second, I am well aware of the fact that when in Rome do as the Romans do, I do not go into Walmart wearing a holey sweater and no pants. Last but not least I have Asperger’s and on the contrary to what specialists and teachers as well as certain family members and peers believed, my condition did not stop me from living a very rewarding and interesting life. I could chronicle these achievements with a grand smile on my face, but we can longer pretend that discrimination against those born with ASD’s is an issue which deserves attention. The large majority of bumps I came across in the road were because these individuals either did not know any better about how to act around me or let their ignorance marr the truth.
Also, if it were possible to detect autism in utero, would this lead to further discrimination towards autistic children? Would some unscrupulous parents even ABUSE their autistic children while praising their neurotypical ones?
Is autism awareness seeking to truly help those with ASD’s assimilate in society to the best of his or her ability, or is it just another continous blame game doomed for a vortex?
We as a society need to ask ourselves these questions before it is too late.