Trained? Cured?
[OK, I started this several days ago with the intention of extending, polishing, eventually having a point to make and being coherent but it doesn't look like that is going to occur. Perhaps in a later post I will do all that and more. (Perhaps monkeys will also fly out of my butt, but I digress.) Anyway, here was my inital yawp in this general direction… And, I'll work on more posts.]
I have been gnawing on the notion that those of us who have (somehow) reached an independent adulthood and are holding down a job and raising our own children, have ‘trained’ ourselves to mask our autism and thus become able exist in the NT world. Or, perhaps even been ‘cured’ as Kamran Nazeer discusses in Send in the Idiots, or How We Grew to Understand the World, his former school director Ira and one of the teachers, Rebecca, no longer considers him to be autistic.
[first tangent: "mask our autism and thus become able exist in the NT world" makes me think of Jerzy Kosinski's first novel, The Painted Bird. Above all, learn to blend in lest they discover you and make of you a messy end. If you are familiar with Kosinski, I think running silent among the NTs feels like the boy did, at least in my adolescence and early adulthood.]
The notion of being trained raises images familiar to my formal anthropological training, since we all must become indoctrinated with the our group norms and culture. I submit, however, that it never becomes instinctive with we autistics like I observe it to be in the NTs around me. We (which is to say, *I*) never seem to achieve that graceful social dance. But, to get along as well as I do, have I been ‘cured’ as Nazeer’s teachers would say or merely trained?
Currently, I vote ‘trained’, which, frankly, kind of stings to admit…
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September 6th, 2006 at 3:17 am
Trained you might be, I am derailed, you see my wheels are set to a different guage.
“In the shuffling madess
of the locomotive breath,
runs the all-time loser,
headlong to his death.
He feels the piston scraping –
steam breaking on his brow –
old Charlie stole the handle and
the train won’t stop going –
no way to slow down.
He sees his children jumping off
at the stations — one by one.
His woman and his best friend –
in bed and having fun.
He’s crawling down the corridor
on his hands and knees –
old Charlie stole the handle and
the train won’t stop going –
no way to slow down.
He hears the silence howling –
catches angels as they fall.
And the all-time winner
has got him by the balls.
He picks up Gideons Bible –
open at page one –
old Charlie stole the handle and
the train won’t stop going –
no way to slow down.
Anyway my rituals are the rails of my own making and the engine of autism lights my fire. I expect Nazeers teachers would find me totally bonkers, it was interesting from an anthropological viewpoint I suppose that at a recent NAS meeting I was the only man not wearing a suit or tie
September 6th, 2006 at 4:56 am
Cured? No.
Trained? Somewhat, in your anthropological sense.
That I have to fight for every last crumb of “executive functioning” and manage to do all I do doesn’t make me any less ADHD. I can’t sit still in meetings or in class or through movies fidgit-fidgit-fidgit, am still prone to accidentally interrupting people, and I still forget stuff to the point where I’m constantly carrying a crumb of worry about that.
I’ll opt for a third option: matured. Granted the social maturing process is slower, but it still happens and continues to happen, hence some adult authors saying they feel that they’ve overcome their autism, because they don’t have the same problems as when they were children or teens.
But I would posit that a lot of us will have days when we feel that we’ve pretty much “licked” this Asperger’s/autism thing, and then have Yet Another Klunk-Klunk-Thud moment, or yet another almost-totally overwhelmed moment and realise that no, one’s abilities improve with maturity, but in the end
you’re still the essential you.
September 6th, 2006 at 5:36 am
“Or, perhaps even been ‘cured’ as Kamran Nazeer discusses in Send in the Idiots, or How We Grew to Understand the World, his former school director Ira and one of the teachers, Rebecca, no longer considers him to be autistic.”
That I find disturbing.
Since when do school directors and teachers get to diagnose or revoke diagnoses, except through having had specialist training in educational, clinical or school psychology?
Without the say-so of a properly trained professional (e.g., a medical or psychological practitioner), diagnoses do not either come about or go away. Somebody should inform this Ira and that Rebecca of this…
I wonder how many more of those there are in the world.
I should like to sound my own barbaric yawp across the rooftops of the world, too.
September 6th, 2006 at 6:15 am
Depending on one’s view of education and socialization in a community or society, we’re all trained to some extent……and hopefully also to break the norms we are taught.
September 6th, 2006 at 7:41 am
When Kamran Nazeer says he’s “cured” he is sending a message (which is uintended) that he’s ashamed to be autistic. It’s no different to a black person who has happened to go outside of black stereotypes who claims to no longer be black. Kamran Nazeer, in that sense, may be an Uncle Tom autistic. To me it’s silly to think that because you do something that is considered uncommon for autistics (like get married, hold a job and so forth) that this somehow automatically makes you non-autistic. And for someone to claim to be non-autistic when this happens just reinforces existing stereotypes. Is Vernon Smith non-autistic because he’s got a Nobel prize? No more than Oprah is non-black because she’s rich.
September 6th, 2006 at 1:20 pm
David with the bollox after his name. I don’t think as I have said before we should be too quick to condemn Nazeer for being an Uncle Tom, Coconut or Banana (we don’t yet have our own term for this it seems)
He is not of our company and not aware of the political nuances of our thinking, I would say in Marxist terms (not that I am a Marxist) he has false consciosness and that is a product of his education and social mileu, he has been taught effectively not to think of himself as autistic.
It is all very curios though, and unless I met him I can’t judge.
There ought to be some study done on all of this, to compare those who come to late dx, with those who have had interventions from erly on to see if really there is that much difference or how much of it is looking through stereotypical “spectacles”
It’s curios really, Nazeers teachers belong to a different era to us. If one is at a party and is introduced to the guests as being autistic they will see you differently than if you simply make a fool of yourself when they will assume other explanations. Having lived most of my life without a DX bI know this effect.
Nazeer through his career progress has achieved social parity with his former teachers and this makes a difference to how they relate to him. This is more complex than his teachers judgement of what autism is, this is social pyscology at work.
September 6th, 2006 at 4:05 pm
Agree with you Larry. Nazeer isn’t really an UT Autie-coconut/banana or whatever. He doesn’t know enough. At the same time it’s crystal that he’s managed quite nicely to get around his world. Hence, if the label autistic implies by definition demonstrable disability, social or otherwise, then it becomes clear (only by that definition mind you) that he is in fact no longer autistic. So, what exactly do we mean by the label autistic???? I don’t find that to ever have been satisfactorily answered. The inextricably linked question is also: what is this thing called ‘Cure”? and that has never been defined either.
Ths is interesting from my personal point of view:
“Nazeer through his career progress has achieved social parity with his former teachers and this makes a difference to how they relate to him.”
Social parity indeed. I remember all too clearly the change from having none to being treated as an equal. Very interesting point At that time I didn’t have aclue what was going on - just enjoyed it. Now, oddly enough, having more than a clue what is going on, I seem to have reverted somewhat to social inequality simply because I have no facility for pretence. I played the social game when it dawned on me that this was a seemingly universal ritual because that’s what people did and there seemed to be no reason not to go along with it, now I can’t go along with it because I no longer believe in it - or something like that:) Maybe my monkey -see monkey -do neurons are stuffed.
September 7th, 2006 at 1:19 am
I am reminded of the time, shortly before her death, when my mum applied for a position on the board of the local helth trust. I helped her write the CV and she was duly interviewed. It did say on her CV that she was disabled, however when she was interviewed on of the interviewers said to her, that it was shock to see how disabled she was (an electric wheelchair user with limited use of her hands) because she would not have believed that someone as disabled as her could have achieved all those things set down on her CV.
She got the post, however the irony is that before she could take it up, she died in the care of the same hospital she had been appointed a non exectutive director of.
September 23rd, 2006 at 6:30 pm
I was talking about the school staff, though… not Nazeer.
September 28th, 2006 at 4:58 am
I don’t think it’s completely correct to call this adaptation “maturing”. I’ve done it, too… enough to have a nice job, or what passes for a nice job in my world. But I find that many people who -to an outside observer- would seem “much more autistic” than me, have a lot more maturity in terms of their thought-processes and … well, other things that really matter.
I have to go teach a class now, so I can’t stay editing until I think of more examples. But I just wanted to mention that. Hope it makes sense, anyway.
December 2nd, 2006 at 5:14 pm
From time to time, I succumb to the temptation of typing my name into ‘Google’ and seeing what happens. I hadn’t done it for a while but I was glad to do it just now.
You discuss here the issue that I have found the hardest to come to terms with in thinking about (my) autism. I have, in fact, become more and more reluctant to describe myself as autistic. This is not because of shame - not at all - as I say in the book, I think that my autism or my autistic characteristics, how ever you wish to call them, are central to how I think, how I feel, how I approach new experiences and so feeling shame about these characteristics would mean feeling shame about almost all of myself and what I do. Luckily, I’m not in that situation!
The primary reason why I have become uncomfortable in using the tag of autism is that I have met, both whilst researching the book and since then, people with autism for whom autism is a very significant barrier to what they may wish to do. For example, I’ve met autistic people who are my age and cannot speak - at all. So much of my enjoyment of the world and other people comes through words and so meeting such people engages all of my empathy. I don’t feel sorry for them in any insulting way. I realise that there are other forms of expression and I argue quite extensively, in my book, that, for example, autistic people are not emotionally damaged, as some experts assume, but are capable of having and do have an emotional life.
Having met people, including my former classmates, whose autism is so much more pronounced than mine, makes me hesitate then before using the tag for myself. It feels like I’m asking for special attention and yet I’m not the one who needs it - they are. It also tends to confuse people. If I am autistic and someone who can’t speak at all is autistic - then what on earth is autism? I want to engage in the enterprise of explaining autism better to people and sometimes I feel that focussing on my own autism, at the expense of that of other people, makes that enterprise more difficult.
What do you think?
December 2nd, 2006 at 7:23 pm
[...] Today Kamran Nazeer replied to my September Trained? Cured? post. He concludes with some really good observations. Having met people, including my former classmates, whose autism is so much more pronounced than mine, makes me hesitate then before using the tag for myself. It feels like I’m asking for special attention and yet I’m not the one who needs it - they are. It also tends to confuse people. If I am autistic and someone who can’t speak at all is autistic - then what on earth is autism? I want to engage in the enterprise of explaining autism better to people and sometimes I feel that focussing on my own autism, at the expense of that of other people, makes that enterprise more difficult. [...]
December 3rd, 2006 at 4:13 am
My main comment on this is on t’other blog however in case Mr Nazeer is curious enough to check back for responses I will ask. Did Birmingham Uni School of Ed. get in touch with you as they were looking for you to do a speaking gig for them in March?
December 3rd, 2006 at 1:33 pm
Laurentius - in answer to your question, no. Also, where is your main comment? I found the discussion on this site really insightful and so I’d like to follow your views.
December 3rd, 2006 at 6:08 pm
I suppose then that the School of Ed, did not know where to find you. I myself would like to see you at the next study weekend as I think the world needs to know that there is more to autism than the usual “self narrating zoo exhibits” to use Sinclairs phrase.
I will repeat my main comment here.
“Ah the perils of googling on ones name, well I usually end up at the top of the google page so I must be famous.
Nazeers book has not turned up on the shelves at Birmingham yet inspite of my having ordered it so I can’t comment on the book. Nadesans social construction of Autism has and that is a not a very good book because it is an outsiders book not an insiders. That is why I am more interested in reading Nazeers book.
As to what he should think. Well I would suggest of course that he read more and become politicised and realise how he is both psychologically and culturally embedded in this phenomenon called autism, which is experienced largely through the media for most. The way you construct your own way of being is not independant of the media unless one happens to be one of Levi Strausses Nambikwara, or Malinovsky’s Trobriand Islanders and I am willing to bet they are much more sophisticated than they used to be in Marshall Mcluhans global village. “
December 6th, 2006 at 3:11 pm
Ah, social construction of identity. Now we’re talking! I wrote a thesis on Foucault not too long ago and so I’m aware of the perils and pitfalls, I hope.
But, look, I do think that we can pick and choose, to some extent, between the identities that are available to us. I am British, Pakistani, Muslim, secularist, tall, I wear glasses, I like clothes by Dries Van Noten. I’m being slightly flippant here but I do feel threatened by your talk of being ‘psychologically and culturally embedded in this phenomenon called autism’. No doubt I am, and I’m not unhappy about that, but I also have some room to wriggle, don’t I?
If, for example, there are elements of ‘autistic identity’ that I take issue with, I am able to say so without negating myself. And hence I do think that the neurodiversity vs neurotypicality debate is pushed too hard sometimes by autistic people. I can’t help but observe that most neurodiversity advocates do not have symptoms towards the severe end of the range. Neurodiversity is fine but we shouldn’t let it get in the way of research and intervention that helps severely autistic people get ‘closer to normal’.
Similarly, I think there must be a point ‘closer to normal’ beyond which it’s neither fair nor illuminating to use the term ‘autistic’ as either a self-description or a description of someone else. That’s my personal dilemma.
Though I certainly think that the broader, policy dilemma stated in the antepneultimate paragraph is more significant.
December 7th, 2006 at 11:33 am
You are reminding me a little of Tom Shakespeare now, or perhaps a little of Temple Grandin. Not all autistic advocates come within the traditional pigeonholing of high functioning, if you at the Getting the Truth out website for instance.
Do we have room to wriggle? I hope so, but sometimes I can be a terrible predestinationalist because I don’t seem to have a lot of room right now in so far the multiple impacts of difference, class, employment status have put me a long way downmarket from where I would like to be.
I don’t agree with normal, it is a construct which ever way you look at it, and whatever way I were differenced, autistic or otherwise within the multiple societal cleavages you have already pointed out with regard to identity I would always be some way off normal.
I look at things the way I do, partly because of my cognitive infrastructure, but also because of the various intersections I have had in the past with different groups trying to establish an identity and a positive and valued place for that identity.