Tuesday, March 3, 2009

Jake Crosby Strikes again

Better watch your backs neurodiversity proponents. Jake Crosby has written
yet another article that takes on some aspects of your agenda. Jake writes about a study that apparently tries to show that neurodiversity results in greater self-esteem for persons not only with autism but other developmental disabilities as well. I wrote about this same study very recently .

I only read the abstract of the study and not the actual study itself, so I did not feel that it would be appropriate for me to comment on its methodology. Unlike myself, Jake has done his homework. He has read the entire study and gives a very interesting critique of its methodology. One of the critiques was that only a small percentage of the study's subjects had an autism spectrum disorder and others had other types of developmental disabilities. Of course I am not sure how relevant that is because the concept of ND could be applied to disabilities other than autism.

Jake does take to task the fact that the study only apparently concentrated on career ambitions rather than actual success in careers itself. He also cites the influence that neurodiversity proponents such as Kathleen Seidel and Camille Clark (AKA autism diva) have on doctors such as Paul Offit and possibly others as well.

One interesting thing that caught my eye in Jake's piece was the fact that apparently this study included strokes as a category of neurodiversity. I wonder if anyone who becomes aphasic or paralyzed from a stroke would just consider themselves as having a different form of brain wiring. This would also be inconsistent with what some neurodiversity autistics have said about comparing autism to conditions such as Parkinson's disease. That autism is something that you are born with so it is part of your intrinsic brain wiring, so I am not sure anyone else would consider stroke victims as having a form of neurodiversity other than the authors of this study.

I won't go into the rest of Jake's article as it would spoil it for anyone else who may want to read it.

Again, the age of autism is a webpage that gets far more readership than mine, so although I disagree with many of things they publish there I am glad that they have Jake as a contributor and that he is willing to have the chutzpah to take on the ND movement. Something very few pro-cure autistics have unless they are willing to be called quisling and house autistics and all of the other abusive terms they use to insult anyone who disagrees with their point of view.

Unlike, their excuse to bash autism speaks because they have no autistics on their board of directors, they cannot use this with the age of autism folks who are willing to have at least one autistic person as a contributor and in a position of some power in their organization.


Anonymous said...

"nor do I take accommodations for having an ASD. Even after openly accepting that I have Aspergers, I did not take academic accommodations;"

I would suggest that Jake doesn't have AS if he doesn't need accomodations. People with true AS have a disability. If they don't need accommodations, they don't have a disability.

My son won't be able to survive without accommodations so I'm not sure who Jake is speaking for but he sure isn't speaking for my LFA son. My son won't ever attend Brandeis University or any university for that matter so Jake doesn't know real autism.

SM69 said...

“Furthermore, this study does not contribute to how prevalent the idea of "Neurodiversity" is within the autistic community because this study examines six autistic people.”

That’s a question I am also asking- not with regard to the study discussed here but amongst HFA/ AS. At first, it appeared to me that most people in that HFA/AS group were pro-ND, happy and proud to be autistics etc. But the more I spend on various blogs, the more I realize this is not the case. I have heard many who have said just the opposite: if they had a choice, they would go without the problems associated with autism (like auditory processing, difficulty in comprehending the whole etc), they want to be helped etc. Even those who appear actively ND are also constantly sending mixed messages of anger, despair, attacks of various sorts, reminding us of their harsh reality. As I am writing this, I am wondering why does it matter really? I understand what Jonathan is saying with the poison ivy metaphor, I appreciate this might be upsetting, but if people are not willing to get help when they can, it’s their choice, it’s a little daft I think they have to destroy other people who are willing to help and understand, but it’s the way they are too, they come with this. If people are willing to get help, then help should be made available as best as possible, not everything is possible though. Why should there be tensions between these two groups? I am outsider to this, although I am very closely related to autism in many ways, but this does not quite make sense to me. If Jake Crosby does not experience the full range of ASD difficulties, that’s probably a good thing too. Because if he was, he would probably only speak for what matters to him and not for the full group of ASD individuals. I have no doubt that other people at the AoA are aware of the other end of the spectrum too, this is where their organization routed from.

Anonymous said...

Young man, you should get some help.

Anonymous said...

I would agree with the poster above. My son has Asperger's Syndrome and he cannot function without one-on-one attention in school and at home. If Jake attends a University and has no academic accommodations (does he live on his own or with his parents? does he take any kind of medication that helps his with his day?), he is unlike 99% of the people I know who have an actual medical diagnosis of Asperger's Syndrome.

The idea of "neurodiversity" is not new, although the name itself may be. The idea is to accept yourself for who you are. This is not a new concept, and has for years been encouraged in every person, disabled and otherwise.

I take issue with many things in Jake's AoA piece, and a big one is this:

"...apparent confidence or career ambition does not dictate real success or happiness. "

That's a pretty absurd claim. It would take five minutes to find several decent studies or surveys showing that personal confidence and the setting of attainable goals can heavily contribute to what we call "happiness."

Anonymous said...

@SM69 (I'm guessing your initials are SM and you were born in 1969. Still, that handle is a little off-putting!).

"Even those who appear actively ND are also constantly sending mixed messages of anger, despair, attacks of various sorts, reminding us of their harsh reality. As I am writing this, I am wondering why does it matter really? "

You might be missing the point. ND types (at least the sane ones) are not saying that autism is a beautiful holiday on the Riviera and every day is smooth sailing. If that was the case, no ND person would ever get an IEP for their kid in school, or take advantage of respite services. The thing ND people (at least the sane ones) stand for is acceptance. Accept that autism is something people have and live with, accept that autism isn't some nefarious government plot to poison the world's children, accept that not everybody sees things the same way (for example, a child banging his head against the wall might cause me to freak out and want to "cure" the child, while my neighbor, with a different personality, different temperament, and different parenting skills, might just take that head-banging in stride, redirect the child, and move on with his day).

What if there was a great cure for autism. Let's call it QU427 (created by Big Pharma, no doubt, but, hey, any port in a storm!). QU427 is administered to every autistic child, and those autistic children instantly become "average" or "normal." But a percentage--10%, let's say--of kids treated with QU427 do not get any benefit. They remain autistic. Hmmm. What to do with those kids. Pity them? Segregate them? Continue to inject them with every available concoction in the hopes that they, too, can become "average" or "normal"? Where does it end? Do we accept these kids as they are or do we try and try and try to change them?

This whole argument reminds me of something I saw on TV a few years ago about Down's Syndrome. Some parents were arranging for their young children to have facial plastic surgery in order to make them appear more "normal," thinking this would give the kid an easier life. Does that seem like a good idea to you? It was pretty clear that the parents of these kids wanted a life for their kids that their kids were not born to have. It's denial. And the antidote for denial is acceptance.

And speaking of denial, at this point, this whole issue is a war between those who think vaccines cause autism and those who think kids are born autistic. If you think vaccines cause autism, you'll feel extremely angry, and you'll want your kid back, the normal kid you had who was destroyed by the Big Pharma/government vaccine conspiracy. If you feel your child was born autistic, you won't be as angry, you'll be working on accepting your special needs child. You will see your child for what he is, and not what you think he would have been before he was "ruined" by a vaccine. So ND people fall in this latter camp--they don't think their kids are poisoned or damaged, they think they just are. That's not to say their lives are a breeze, just that they work towards accepting their autistic child as he is, all the while helping him navigate his life in the most pleasant way.

SM69 said...

Anon Nb2 - Remember also there are many undiagnosed people with Asperger, some of whom are coping without support. Equally there are some who have a diagnosis and hold a job- how many, who knows? I am not saying they manage easily and they would not have done more easily with support, but what sort of support is the right?. A label comes with stigmatization as I have found out again recently with my friend. (If I had said nothing, we would have done that dance workshop no problem, I may have needed to help her in some ways, we may have dropped out it, but we would have had that opportunity). How many opportunities are missed when you present with a diagnosis? How many opportunities are missed when you don’t present with a diagnosis and the support that may come with it? Trouble is in autism that one cannot generalize what is right for one person to someone else. And I think there are people with AS who probably do better without support and keeping quiet about their label and needs and wants to be treated as anybody else would. That does not mean these people are wrong, insenstive, not knowldgeable or representative of autism issues.

Anonymous said...

Ha! I think I speak for 99.9% of parents of kids with autism when I say we would much rather have our kids living without a diagnosis of any kind. However, there is no way for my child, or the AS children of friends of mine, to "keep quiet" about having Asperger's. There is no way for my son to not appear to be autistic. If he didn't have the actual medical label of Asperger's, he would be "labeled" in other ways by everyone he came in contact with: brat, dummy, disturbed, hyper, annoying, crazy. Whatever. You cannot hide autism. If your friend has autism she can hide from others, she might want to get a second opinion!

As for the many people with Asperger's you mention who are undiagnosed and living without need of support? As far as I'm concerned, someone does not have Asperger's unless he has been diagnosed by a qualified physician. Those who are "self-diagnosed" and get all the way into adulthood with no more problems than the average Joe are nothing like my son, who is quite severely affected by this disorder. That's often the difference between the "self-diagnosed" and "really diagnosed." Bill Gates may seem a little Asperger's-ish, but Bill Gates no more has Asperger's Syndrome than a person hard of hearing has deafness.

The adults who self-diagnose Asperger's are often quirky people who have struggled somewhat in life, and they realize this diagnosis suits them. However, most kids getting the diagnosis today are not like that. They cannot go to just any school and get along in the way these self-diagnosed "aspies" did. They wouldn't last a day in the typical school environment without help.

SM69 said...

SM stand for Skymaker my screen name on youtube, 69 is a sign of love (to me), I am born in 66. To be honest, I didn’t think very much for that name, and I keep it because I cannot really be bothered thinking of something else. Who cares?! ;-. Any name would do.

I agree with you on the ND, totally- But I do not fully agree with the rest of your message- are you saying that if there was help, but that could not help everyone (as there is at the moment for some of the youngest kids) that this would somehow change our attitude towards those who remain on the spectrum?

Of course changing the face of a DS child is daft, this is all about appearance. The movements that are ongoing in autism in term of intervention (and I am not talking about vaccine) are to help independence, health, socialization etc, not to become normal! And certainly is not an issue of appearance.

Also I don’t think parents who have seen a child regress do not see him or her for what he is in the present time. I am one of these parents and I see my son and love him just the way he is. But I am going to work very hard to make sure he gets the best at everything and if I can help him more, I will do it. I was evolutionary selected to have this response- my genes and instincts are driving me to this as it is the case for most parents.

I don’t know what the war is about, but to be honest, I don’t find this very helpful (I don’t mean your message, I mean all these tensions). But maybe it is in some ways, debates always are, but not anger- and I think we all want the same fundamentally. That’s my view anyway. And I am not going to kill myself in arguing we need peace!

I'm giving this blog a break anyway!

Ender said...

To the first anon, I never had accomodations either until high school. My mom was basically tricked into not getting them for me. I had access to use computers for tests in college, but that was basically it. I still have my bachleors and plan to begin my trek for my masters next year or the year after. And I am definately AS/NVLD (diagnosed about 4 years ago by a team of therapists). And what makes LFA real autism, as opposed to HFA/AS. I think HFA/AS is actually more common then LFA...