Conversations
Reflecting on Mark Stairwalt's post about autism as a family reunion, I have to confess that I can't wholly relate to his well-crafted analogy from my own experience because my family never has held large gatherings. But I had what might be called a mini-reunion when I had lunch with my mom at a nearby restaurant on Thursday, catching up on the latest family gossip about who cheated on whom, and so forth.
We also briefly talked about the proposed changes in the autism diagnostic criteria. I mentioned that I thought we would see more changes in the future as researchers identify biomarkers, such as in this study showing a significant delay in auditory processing.
"That's interesting," said my mom, lowering her voice almost to a whisper as she confided, "I never thought of myself as autistic, but I do seem to have a delay in hearing and understanding speech."
I replied that it was only to be expected that family members would have somewhat similar traits, and then the conversation moved on to a more general discussion of genetics.
After reading the New York Times article by Roy Richard Grinker on the diagnostic changes, I've been picturing similar conversations taking place in many families. I'm very pleased to see how far Grinker's views have evolved in just the three years since the release of his book Unstrange Minds, which I reviewed on this blog. I noted in my review that although Grinker, a cultural anthropologist, is very well aware of the socially constructed nature of autism, he nevertheless made a number of unfounded assumptions about his daughter based entirely on the prevailing stereotypes in Western culture. Now, just a few years later, those assumptions—such as that his daughter would never leave home or marry—are nowhere to be seen, replaced by this enlightened observation: "Narrow diagnostic categories do not help us understand the way a person will develop over time."
Of course, as with all improvements in society's perception of a minority group, some of its more privileged members have made clear that they would rather keep the stereotypes and prejudice because they can't deal with the prospect of losing what they perceive as their elite status within the group. In Bev's post Angry Aspies, Please Go Away, she calls out two of the usual suspects by name, including (no surprise there) Michael John Carley, who is up to his usual divisive tricks. Clay's blog entry on the topic mentions another culprit. This was only to be expected; and as Clay accurately states, the autistic community needs to have this conversation. Still, it's odious when people make clear that their idea of dealing with stigma is to deflect it onto somebody else instead of working to end it altogether; and I sincerely hope that those who are displaying such attitudes will either grow up or, as Bev says, just go away.
Edit: More posts written from an anti-elitist perspective can be found at LB/RB, Ballastexistenz, Reports from a Resident Alien, Cat in a Dog's World, Journeys with Autism, Uncle Sam's Cabin, The Standard Review, Life with Joey, I'm Somewhere Else, Susan Senator's Blog, Autism Street, Heatherbabes, Homo Autistic, Astrid's Journal, A Time Will Come... and AspieWeb.
We also briefly talked about the proposed changes in the autism diagnostic criteria. I mentioned that I thought we would see more changes in the future as researchers identify biomarkers, such as in this study showing a significant delay in auditory processing.
"That's interesting," said my mom, lowering her voice almost to a whisper as she confided, "I never thought of myself as autistic, but I do seem to have a delay in hearing and understanding speech."
I replied that it was only to be expected that family members would have somewhat similar traits, and then the conversation moved on to a more general discussion of genetics.
After reading the New York Times article by Roy Richard Grinker on the diagnostic changes, I've been picturing similar conversations taking place in many families. I'm very pleased to see how far Grinker's views have evolved in just the three years since the release of his book Unstrange Minds, which I reviewed on this blog. I noted in my review that although Grinker, a cultural anthropologist, is very well aware of the socially constructed nature of autism, he nevertheless made a number of unfounded assumptions about his daughter based entirely on the prevailing stereotypes in Western culture. Now, just a few years later, those assumptions—such as that his daughter would never leave home or marry—are nowhere to be seen, replaced by this enlightened observation: "Narrow diagnostic categories do not help us understand the way a person will develop over time."
Of course, as with all improvements in society's perception of a minority group, some of its more privileged members have made clear that they would rather keep the stereotypes and prejudice because they can't deal with the prospect of losing what they perceive as their elite status within the group. In Bev's post Angry Aspies, Please Go Away, she calls out two of the usual suspects by name, including (no surprise there) Michael John Carley, who is up to his usual divisive tricks. Clay's blog entry on the topic mentions another culprit. This was only to be expected; and as Clay accurately states, the autistic community needs to have this conversation. Still, it's odious when people make clear that their idea of dealing with stigma is to deflect it onto somebody else instead of working to end it altogether; and I sincerely hope that those who are displaying such attitudes will either grow up or, as Bev says, just go away.
Edit: More posts written from an anti-elitist perspective can be found at LB/RB, Ballastexistenz, Reports from a Resident Alien, Cat in a Dog's World, Journeys with Autism, Uncle Sam's Cabin, The Standard Review, Life with Joey, I'm Somewhere Else, Susan Senator's Blog, Autism Street, Heatherbabes, Homo Autistic, Astrid's Journal, A Time Will Come... and AspieWeb.
Labels: autistic community, culture, Michael John Carley, psych industry
posted by abfh at
1:03 PM
26 Comments:
I'm ready for that conversation, and ready to "kick ass and take names", because it's such an important topic. If we want NTs to accept us, and lay aside their bigotry, we can't be found guilty of it ourselves. It's time for a split, like that church group (United Presbyterian?) split over gay ministers and marriages.
By
Clay, at 2:08 PM
@Clay: While I can understand wanting to "split" from aspie elitists, in my opinion, it will be just as divisive in the long run as their bigotry towards autistics because of their greater degree of disability. And how can we expect to successfully get the community to lay down differences and converge if we must split to do it? It seems paradoxical to me.
By
TheWiredOne, at 2:24 PM
@ SBWG - It will be "just as divisive" because those lines of difference have already been laid down, by the very same bones of contention - their already existing bigotry towards those who are more disabled.
Mitchell isn't the only one who is confused, thinking that Carley is a "member of neurodiversity", when in fact, he never has been.
We need to try to convince certain people to change their minds, but if they won't, we need to disavow them, and be able to say that they don't speak for us.
By
Clay, at 2:54 PM
It irks me when Jonathon writes about neurodiversity becuase he does not know what it is.
It is above all DIVERSITY
here in blighty the term is used by many groups, in the dyspraxia world, in the specific learning disabilities world, people use the term as an identity an alternative to medical labeling not as a partisan statement in an online feud.
The earliest mention of the term on the publicly accessible internet is in a dyslexia oriented newsgroup, and the reply to that post which is not often cited, turns out to mine. Notwithstanding it was also hawked about on lists I did not belong to back then.
Judy Singer was the first to use Neurodiverity in print, and I had read that article before I ever saw the word on the internet. Judy wrote an article in book relating to disability studies, not autism.
Some folk need an education but alas they will not take it from me, even if I do have this vast repository of experience and knowledge of the disability movement in my case going back to the 1980's.
I have to say the ignorance and the arrogance really pisses me off because I go back a very long way. I didn't even realise how much of a feature in the landscape I was until listening to that doyen of the disability movement Colin Barnes a year or so back I realised that I go back further than him.
I've got a right to be annoyed at upstarts like Carley, and blinkered self abusers like Jonathon (to whom I do not bear any ill will)
I sometimes think Ari is an upstart young pup too who is trying to teach his grandmother to suck eggs as the expression goes, but on the whole Ari has got it right, what is more Ari has guts to stand up for it.
I have a life beyond autism, I am still a member of our City Councils Disability Equality advisory panel, not by virtue of being autistic, but by virtue of my long involvement in pan disability issues.
I also belong to the Royal Society of Arts, (by invitation) an organisation Benjamin Franklin belonged to, whose interest goes way beyond disability.
To pigeonhole me as a 'neurodiversity' freak who is only concerned about a narrow section of the community namely "super aspies" is a total calumny.
By
Larry Arnold PhD FRSA, at 5:43 PM
Rex said:
"I sometimes think Ari is an upstart young pup too who is trying to teach his grandmother to suck eggs as the expression goes, but on the whole Ari has got it right, what is more Ari has guts to stand up for it."
I thought the expression was, "Don't try to teach your grandpa how to catch fish." At least, that's how Heinlein has it in one of his books. We're definitely "people divided by the same language". ;-)
Anyways, I had the same reservations initially, but then I realized that Ari really does "have the chops" for it. It doesn't matter how old he is, that would be some kind of age bigotry.
And there you have it, folks, from a couple of old lions.
By
Clay, at 6:16 PM
@Clay: It is actually all too true that when a neurodiversity proponent is in the younger age bracket, they are dismissed purely by virtue of their age and are said to have been brainwashed by neurodiversity when they were still too young to comprehend it. *rolleyes*
By
TheWiredOne, at 6:38 PM
Sadderbutwiser girl.
The reality is of course that we need the young and there enthusiasm to take over from us old farts, because what they lack in experience they make up for in energy.
Anyway who says people have to agree all of the time, so long as we are going in the same direction.
By
Larry Arnold PhD FRSA, at 6:56 PM
@The author: While I agree that younger people are needed for reasons of enthusiasm, it is also very prejudiced to assume that just because someone is in the younger age bracket, they don't know what they're thinking or talking about. Nor should their age be used to discredit their cause. Feel free to visit my blog sometime at A Time Will Come....
By
TheWiredOne, at 7:20 PM
A mother on the Hub brought up Semantic-Pragmatic disorder, which was Ben's original diagnosis with the neurologist he saw. I had forgotten all about it. While googling, just out of curiosity, I became aware that kids with ADHD, Autism, Bipolar, and other labels also have had the label of S-P. When Larry talks of a continuum of Neurodiversity, I feel it is spot-on, and my recent google escapade just reiterates it.
I was amazed at the commonality between the labels.
By
Usethebrains Godgiveyou, at 8:55 PM
The disability community I've seen has traditionally been a political force that discouraged most views and most people who needed to express their views the most. For the most part it has been a stagnant rather than a helpful force in the U.S..
The people who are most recognized are educated suburban mothers.This is especially true with mental disabilities. Of course when the children grow up, they are silenced by the claim that they lack of experience.
After all, disability is still seen charitable contribution so the ones doing the providing are seen as the ones with something important to contribute. Opinions are thought of as just an extension of their worthiness of having something to offer.
The disabled people who are most affected by disability based decisions continue to be pitied rather than encouraged and are enslaved by political campaigns that never see clearly those whom they claim to be helping and what those people need most....
Then the the cycle is reinforced of discouragement and continuing to disable and dis-empower people for the sake of people who have power continuing what they consider is their "right' to it (for whatever reason they come up with at any given time).
By
Ed, at 9:17 PM
@Ed: "The people who are most recognized are educated suburban mothers."
"...the ones doing the providing are seen as the ones with something important to contribute. Opinions are thought of as just an extension of their worthiness of having something to offer."
The people on the profiting end of both situations are both privileged in comparison to their "benefactees." Because of their privilege, they are seen as deserving of privilege. Thus, privilege perpetuates itself and the unprivileged are always left out.
By
TheWiredOne, at 11:38 PM
Yes SBWG, At least I think we are saying the same thing....let me know if I'm misunderstanding.
Privilege perpetuates itself is exactly what I was saying so I know we agree on that.
The ugliness of charity and the attitudes it encourages are still very prevalent. The supposed giver (in this case the parent, the teacher or therapist, the expert/specialist, policy maker etc.) is always seen as who is important so the supposed receiver (child, student, client) gets seen as being of lower value and therefore not having an opinion worth listening to.
Mutually benefiting relationships rather than burden mentality is scarce. People can't appreciate what they have so they choose to try to control it rather than seek to experience the value.
These ideals cater to the people who already have power in order to preserve it. It is perpetual (good word).
These notions of hierarchy preserve societal structure and too often filter into family life.
Unfortunately, the ideas are often even more prevalent in disability community (which is already the elite among disabled people) and even more when the disability has something to do with how people think (neurology, psych, intellect).
I wish how damaging it was in the autistic community was discussed more often. It won't empower people to rank autistics.
By
Ed, at 12:26 AM
Well when it comes to youth figure this much out, to have absorbed as much knowlege as I have takes time unless you have the savant abilities of a Kim Peak.
What I had when I was younger was capacity to fill, right now I have perhaps a little too much junk in my brain to sort it right.
It is just not possible to have the same amount of experience when one is twenty, there is not the same historical perspective of having lived through different times. Heck if I live another twenty years I hope it will still be gain, I am not finished learning yet.
Of course it's always going to be the same, the young will grow impatient with the old, and the old will criticise the young for there haste.
Remember this and when you have another forty years or more, reflect on it.
The only real sin is not ever giving the young a chance, as I had my first experience of committee work when I was only 17, somebody had the foresight to give me the chance.
By
Larry Arnold PhD FRSA, at 7:39 AM
It's funny that so many people are being so very serious about labels, when it's clear that so many of the quacks and shrinks applying these labels have quite carefee and pragmatic attitudes towards making a diagnosis.
I'll bet the majority of autistic people out there don't believe they belong in the DSM at all, under any label. I'll bet most autistic people haven't even heard of "neurodiversity".
By
Lili Marlene, at 10:50 PM
After reading that recent article by Prof. Grinker linked to in this blog piece, I noticed that Grinker still isn't bothering to mention that his daughter is intellectually gifted, even though he described evidence of this in his book. Prof. Grinker, I'll start admiring you as a person when you properly acknowledge your daughter's abilities, and break free of your obsessive focus on your child's autism.
I find it very annoying and intellectually dishonest that the subject of differing levels of intelligence is being ignored by so many commentators on the subject of the autistic spectrum, especially among those who identify themselves with the neurodiversity movement. Baron-Cohen was wrong when he linked intelligence levels with levels of speech development in his conception of diagnostic differences in the autistic spectrum, but it is plainly stupid to rebel against this erroneous thinking by supressing all mention of intelligence in relation to the spectrum.
By
Lili Marlene, at 11:41 PM
@Lilli Marlene: If we were suppressing all mentions of intelligence, where would all the literary references, historical comparisons, and mentions of scientific fact go? The reason why a lot of neurodiversity proponents aren't using intellect to justify autistic existence is that out problem stems from the idea that only certain kinds of people should be allowed to exist, which fueled the eugenics movement and kicked off the Holocaust in World War II. Back in the first half of the 20th century, the main standard used to judge a person's worth was intellect. The bias towards higher intellect was actually the basis of eliminating a lot of minority groups. To be specific, scientists performed IQ tests on various members of ethnic groups and found that, statistically, people of Slavic ancestry, Asians, and blacks all statistically had lower IQs than those with Western European roots. This all stemmed from privilege and unequal education, but back then, the lower IQs were considered proof that certain ethnic groups should be eliminated. For this reason, it is dangerous to be favoring intellect and intellectuals. If we do such, we risk falling into the same trap and making our own message come to moot. See my post On Eugenics and Intellectual Hubris for more on this.
By
TheWiredOne, at 2:01 PM
Ed, it would seem that your experiences of the 'disability community' whoever you mean by it, are like Michelle Dawsons in that respect and rather different from mine.
Why that would be I don't know, because all I have learnt which I apply to 'neurodiversity' I learnt in the radical disability community, where I feel equally at home as I do within autistic circles.
I've met resistance from some folks to be sure but all means is that there are a-holes everywhere.
In the UK DAN does not mean 'defeat autism now' it means disabled peoples 'direct action network' often a cause of confusion by those who have heard of one but not the other.
Are you not aware of the history of the independant living movement in Berkeley and what that was about? it was about de-institutionalisation self help and autonomy, and if 'we' are not also about such things where are we?
By
Larry Arnold PhD FRSA, at 3:29 PM
I don't mean to sound unappreciative Larry. Anytime progress can be made I'm all for solidarity but claiming that decisions are democratic when they aren't really bothers me.
By disability community I mean the organizers and the people who get involved in political disability issues. I have found those people at Centers for Independent Living. With Mental Health issues I've found them at at NAMI clubhouses. (NAMI is now 75% financed by the pharmaceutical industry)
I can't imagine how things are in Canada or the UK but I've mainly been in the southern U.S. I don't know how they are comparable but southern states have some real ugly history.
The de-institutionalization issue is something that represents some of the problems I've seen handled very poorly. I was released from an institution in the mid 1980s which was later declared to be the worst in the U.S. once they finally got an independent investigation there.
I was part of the programs that were set up for outpatients once they started closing the institutions.
At that time I qualified for services for both brain injury issues and the mental illness de-juer. Whatever it was at the time I forget but diagnosis means almost nothing to the population who end up in institutions. It's a warehouse for restraining and punishing homeless peopole not a school.
The class system drew very strict lines of whose opinions were valid and whose weren't in the disability community. Members of NAMI (and they were considered radical at the time HAHA!) were completely silenced by parents.
The disabled from institutions:
1)had no say in CIL meetings because we had no experience speaking up for our rights
2) we were discouraged to do so
3) many within the larger disability community weren't comfortable with "psych clients" although many of them also used psych meds and services.... but were afraid of the stigma (LOL sound familiar?)
Within a year of leaving institutions (a year within the time they were released) and being placed in these alternative programs I had 2 friends that died. They were both young and their death was related to the environment they were living in.
Both had opinions that were never heard by advocates. Both deaths could have been prevented. The institutions were worse mainly because the abuses were lawful. Also though, the abuse in these programs were lawful too and they had even less opportunity to see a doctor on the outside. Good solutions are bad when they are used to hide the need for the best and needed solution.
The problem I have with disability politics (which also means the community to me) is the idea that the most qualified or the loudest should be the only ones involved in decision making. The hierarchy is based on arbitrary judgments and popular criteria....and people taking charge who are afraid of stigma at the expense of stigmatizing others.
Policies and politicians need to be questioned by EVERYONE and especially those who are affected the most (which are often the ones heard from the least). That needs to stop.
There's all that and.... like you say, there are a-holes every where. :)
By
Ed, at 5:33 PM
Yes but I have been involved with local user led mental health initiatives too, and I mean user led.
There is quite an interesting dialogue that goes on there with those who are totally into Szasz and social constructionism that deny neurological difference at all, so all in all some interesting debates when neurodiversity meets psychiatric survivor movement, good debates as well.
Hearing voices network and all, whole different way of looking at things to DSM.
By
Larry Arnold PhD FRSA, at 7:26 PM
I see that Sadderbutwisergirl is basically admitting that lots of commentators shy away from mention of the most important fact that intelligence is important because they are afraid of being branded as a Nazi or a eugenicist. What a pathetic situation! So we are banned from mentioning that an autistic (or non-autistic) child's intellectual ability is a hugely important factor in predicting that child's potential for success in life in many different areas of functioning. We are censored from objecting when people casually confuse autism with intellectual disability. We are not allowed to acknowledged that high-achieving and high profile autistic people generally are intellectually gifted or at the very least, above average in intellect. We are also discouraged from advocating that an intellectually gifted autistic child needs to have their giftedness adequately dealt with by the education system, as much as or more than the child needs their autism accomodated.
Sadderbutwisergirl wrote:
"The bias towards higher intellect was actually the basis of eliminating a lot of minority groups. To be specific, scientists performed IQ tests on various members of ethnic groups and found that, statistically, people of Slavic ancestry, Asians, and blacks all statistically had lower IQs than those with Western European roots."
Oh yes, the Stephen Jay Gould version of history. Was he a historian? Wasn't he a biologist? Can you tell me, was there a eugenics-inspired holocaust of Asians? Was there a eugenics-inspired holocaust of dark-skinned people? I don't think so. But there certainly was a holocaust of Jewish people associated with eugenics and racism. Did the Nazis accuse the Jews of being genetically stupid, or were they seen as threatening and socially dominating? Last year I read a most interesting book that presented evidence that one branch of Jewry is characterized by gene-based above-average intelligence. Intellectually gifted minority groups and ethnic groups who are inconveniently living on land that is desired by a dominant ethnic group are the types of minorities that have historically been targeted by killing programs associated with eugenics. Can you identify a single large-scale killing program that has ever been perpetrated on a minority group geniunely because such group is seen as intellectually inferior?
By
Lili Marlene, at 6:02 PM
For fuck's sake are you for reals, Lili Marleen?
How can you be so ignorant about history?
Haven't you heard of Aktion T4?
And how about this:
Phillip Lenard and "Deutsche Physik" go read about how Nobel Prize winners can talk out of their ass, I hope it'll cure your intellectual snobbery and rampant disablism.
I also wrote about this phenomenon in Ban The R.Treatment, it's about an actor with Down Syndrome.
What is holding us back in society are not our cognitive abilities it's snobs like you, who totally don't even notice their privilege.
By
Kowalski, at 1:23 AM
To the antivaxxer who spammed this post with two comments linking to your website: You might have gotten away with posting just one, but you overreached. I've deleted them and will do the same with any future links to your site.
By
abfh, at 8:33 AM
@Kowalski: To say the least about what you wrote, brava to you, huns. Your response hit the nail on the head perfectly in terms of consequences of elitist snobbery. And more on the importance of intelligence, there are plenty of displays of intelligence on pro-neurodiversity blogs, such as literary references, historical comparisons, and mentions of scientific fact. Many neurodiversity blogs are intelligent enough to use these, but they use them for the good of their brethren, do an awesome job at it, and ultimately do good for the whole autistic community. And I say that that's a lot better than privileged snobbish beliefs of superiority.
By
TheWiredOne, at 9:47 PM
A counter-argument is worth responding to, but mere name-calling isn't worth my time, or anyone's for that matter.
By
Lili Marlene, at 10:12 AM
I have a question to everyone. What exactly is the meaning of intelligence and what is the correct usage to that meaning?
By
A better future for all, at 7:28 PM
Cube Angel,
I wrote a blog post in answer to your question:
"What exactly is the meaning of intelligence and what is the correct usage to that meaning?"
http://diversityrules.typepad.com/my_weblog/2010/02/smart-magic.html
By
Ed, at 8:02 PM
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