Friday, January 26, 2007

Autism, it's not what you think, it's how you do.

In 1944 Gunnar Myrdal stated in "An American dilemma, The negro problem and modern democracy"

"A handful of social and biological scientists over the last fifty years have gradually forced informed people to give up some of the more blatant of our biological errors, but there can still be countless errors of the same sort that no living man can yet detect, because of the fog in which our type Western culture envelops us. Cultural influences have set up the assumptions about the mind, the body and the universe with which we begin; pose the questions we ask; influence the facts we seek; determine the interpretation we give these facts and direct our action to these interpretations and conclusions."


I borrow this freely from Stephen Jay Gould though it is set down elsewhere, for Gould sets out in the mismeasure of man examples of how the contemporary notions of racial stereotypes and superiority directly influenced the science of the day, and from that perspective the notions of the Creationists and the Darwinists were completely in agreement. Science produced “facts” that Women and Black races had smaller brains, and more ape like features.

The statistics of such renowned scientists as Broca "proved" it, so did the observations of such medical taxonomists as John Langdon Down, and even Darwin himself was in on the act.

Gould shows how easily data is misinterpreted by prior bias, and re-interpreted to when it suits to produce the opposite argument when suddenly refuted, that being the tenacity of a scientist toward their original notion, that the will find ever more complex perversions to explain what ought in scientific terms to be a sinking ship.

Bruno Latour a philosopher and sociologist as well as a historian of science gives many examples of the way in which facts are in reality nothing but a consensus produced by complex processes of human endeavour that have little to do with pure empiricism.

Thomas Kuhn gives us the notion of paradigm shift, and if we want to see all of this sociology in practice we can observe the ding dongs of the pro and anti mercury theorists each of whom miss the practical and most important part of autism.

Never mind the bollox we are here and what is to be done? Many a good omelette is made by first breaking eggs and I would like to break the egg heads on both sides who divert themselves with arguments that have no place beyond establishing how many angels can dance on the head of a pin.

Autism is firmly located as a Sociological phenomenon within a wider discourse of disability and the very science that purports to define and reify this phenomenon is flawed because it is predicated not upon what is practical but upon the notions of autism being an affront to parenthood and the American way of life, from Kanner onwards through the perversions of both Bettelheim and Rimland in turn.

In others eyes it is more Bob the Builder “can we fix it, yes we can” than Thomas the Tank Engine. Thomas runs on rails, but that is not all that determines the course that Thomas takes, it is a complex interplay of engineering, signalling and the social function of the railways that is reified in Awdry's parables.

I would like to refer to the pragmatics of establishing autism as just part of the human condition that has to be accommodated for in the same way as dyslexia, and the other neuro diversities.

Nobody these days would contend that dyslexia can be cured by chelation or neuroleptics.

No the mainstream realises it is a developmental condition that can be ameliorated to the extent with which each individual has the innate capacity, and that perhaps different educational styles are necessary to come to terms with this very post literate phenomenon.

I have been saying the why and wherefores by which we have come to label autism in the latter half of the twentieth century and how it could not have happened before that because of the dubious cultural “advances” in society and the creation of disorders tied closely into the historical development of medicine and pedagogy. It seems that you don’t just have to take it from me any longer as Majia Nadesan has published much the same notions ahead of my conclusions.

Touché

34 comments:

Anonymous said...

Rather a brief review on amazon - could you expand a bit please? I know I should buy the book and make up my own mind, but it looks interesting and my nightstand is already groaning.
Cheers

Joseph said...

Larry: I think you see science as the problem, when the problem is the interpretation and social construction of scientific facts.

It's a fact, for example, that women have smaller brains than men, perhaps not when adjusted for weight; that's not clear. There are many other average differences, for sure. I don't think I just undid the feminist movement by stating this. Would it be better to pretend that differences don't exist? Acceptance of difference should be the goal of the social model instead in my opinion.

John Hayes said...
This comment has been removed by a blog administrator.
laurentius rex said...

I have removed the last comment which contained advertising.

For what it is worth the supposed correlation between autism and TV viewing is an example of the bad science I am attempting to illustrate.

One could just as well correlate autism or anything with the increasing prices of petrol. It would be a perfect correlation just as the TV viewing one is. If there were a cultural prerogative to connect the two then you could guarantee that some trained scientist would attempt it.

laurentius rex said...

I think that the problem is for those who believe that science is some kind of a ruler that can objectively be held up against the world.

Well arguing by the analogy. The units of measurement are decided by culture.

And arguing a priori

It is not science that describes neurology but neurology that determines that there is even a process which we call science.

laurentius rex said...

I would urge people to read Nadesan albeit I am resentful that this book has needs been written by a non autistic "colonist" of the genre.

That being said there is nothing there I much disagree with and it is a fair summary of much that I have already considered and discovered to be the case.

I regret that it does not give the position to autistic culture itself that it might, the obligatory quote from Amanda, presumably lifted from a period of lurking on Aut Advo is about as far it goes there.

Politically it is still naive.

Anonymous said...

As an nt scientist it is good to be challenged and provoked. I appreciate your very insightful post.

Jonsmum said...

I have a great deal of respect for you as a person, even though our views on autism are very different.

I have to ask you, what is your opinion on "the notions of autism being an affront to parenthood"?
Do you believe this is the case?

I know you don't always respond to comments on your blog, but will you please answer this for me?

laurentius rex said...

I don't believe the phrase is one of mine, but the context of the phrase as I understand it comes from the post war American dream where disease and war have been abolished in the popular imagination and things can only get better. A different weltanschaung to the experience of those who lived during the depression, or say the austerity years in post war UK.

Anyway it is the notion that a "perfect" child is a right and anything but, any disability causes cognitive dissonance within that world view and therefore becomes an affront to the expectations of parenthood that is deeply embedded within that culture. It is what engenders the tragedy model discourse seen in a variety of movies, where disability is portrayed as loss. Essentially Jim Sinclairs "Dont Mourn for us" is an answer to this ethic.

The belief that autism is an affront to parenthood is an affront to my affirmation of being. And no I do not believe autism is an affront to parenthood, it is merely percieved far too often as such.

Jonsmum said...

"And no I do not believe autism is an affront to parenthood, it is merely percieved far too often as such."

Do you believe it is the parents of autistic children who perceive autism as an affront to their parenthood?

laurentius rex said...

To some undoubtedly it is, there actions show it.

Joseph said...

Certainly there's a serious problem of bad science, pseudo-science and fabricated claims in the autism world. That's to some extent independent of the issue of how autism is socially constructed. There is some good science to be found amid all the garbage.

Jonsmum said...

"To some undoubtedly it is, there actions show it."

Would I be right in assuming you view me as one of those parents "whose actions show it"?

Jonsmum said...

Sorry I've put you 'on the spot' Larry.
I'll take your lack of response as a yes.

laurentius rex said...

You seem to have answered your own question. If you are a curebie with a misguided notion as to the etiology of autism and a wealth of conspiracy theories behind that supposition then I would say you are not accepting your son's autism as something that was inevitable.

As for drawing conclusions from my lack of a reply, that is plain wrong to do. I have been at Birmingham University all day, reading papers on the genetics of autism amongst other things and remained in Birmingham for my NAS befriender training for the evening, so autism has been occupying much of my time today, never mind living with it.

Sometimes I am too busy to keep a constant eye on my blog.

Jonsmum said...

I apologise for "drawing conclusions from my lack of a reply", but you have not answered my question, which was;

"Would I be right in assuming you view me as one of those parents "whose actions show it?""

laurentius rex said...

You flatter yourself in assuming I know what your actions are, you will need to remind me.

But to repeat, if you believe that science holds some "magic bullet" or some infallible intervention that can turn any autistic child into a replica NT who will stay NT throughout there lifetime experiencing no stress as a result, I think you are very wrong.

One needs to work with autism not against it to achieve results.

Jonsmum said...

I do not wish to argue or play games with you in a 'public arena'. I am trying to be diplomatic about this.

Yes I do hope there is a "magic bullet" that would cure my son's autism and alleviate his pain.
I am also a mother who has worked with autism to achieve results.
The two are not mutually exclusive.

I asked you, "Do you believe it is the parents of autistic children who perceive autism as an affront to their parenthood?"

You answered, "To some undoubtedly it is, there actions show it."

Now you know what my feelings and actions are, do I fit your criteria for believing my son's autism is an affront to my parenthood?

I am sorry to press you on this, but I thought you might have understood just why I would need you to answer this.

laurentius rex said...

Yes

But then you see I am no diplomat.

Jonsmum said...

That's all I wanted to know.

laurentius rex said...

Oh Well

"don't ask me what I think of you, I might not give the answer that you want me to"

http://www.youtube.com/watch?v=KE4HGlmtOcg

Jonsmum said...

Larry;

I didn't want to bring this up on your blog but after your last comment I think my diplomacy is wasted on you.

The mother who you think believes her autistic child is an "affront" to her parenthood, is also the mother who respected and admired you, despite having totally different views on autism.

I am a photographer myself, I can go and buy photo's from shops or galleries, but I wanted your photo's Larry.
I wanted them because I liked you, because they are good, and yes, because you are autistic like my son.
Why would I do this if my son's autism was such an affront to me. It doesn't make sense.

This is your opinion and you are entitled to it, but you are wrong, and the only affront to me is your opinion of me.

I can't look at your photographs now.
Listen for the postman, I'm returning them.

laurentius rex said...

The situation is simply this, when pushed to give an answer that I did suspect would be unpopular, but being as the question was phrased in the way it was and given what I have said before, could only be given in the negative I had no more choice to answer in that way than if I were under oath in a court of law.

That is the way I am, even had I avoided giving the answer you would have taken it as yes anyway so there was no avoiding the situation except for me to tell a lie.

I cannot even claim the offending phrase for one of my own as it comes from the general discourse on disability and stands for any situation where parents have an unrealistic belief that they have been denied the "perfect" child that no society in the world has ever been capable of delivering

For even if your child has sailed through school with straight A's and is on the threshold of a promising career as a concert violinist, sometimes the grim reaper has other plans.

One should treasure what one has, cos it is all fragile.

To repeat the point, I think it is the society we live in that drives a degree of expectation that cannot be met and the resulting cognitive dissonance is what is driving the blame culture.

Jonsmum said...

I understand what you're saying and genuinely have no wish to argue with you.

Sorry to back you into a corner. I hope you understand why I did it.

Scruffythecat said...

Jonsmom wrote:
(Yes I do hope there is a "magic bullet" that would cure my son's autism and alleviate his pain.)

Perhaps in the year 2060 you might get your wish as far as a possible rewiring of his neural network.

Until that time maybe have some empathy for those you claim to appreciate...
Larry is a magnificent human being and seeing you toy with him is really not very nice of you.

Anonymous said...

Jonsmum said...
I understand what you're saying and genuinely have no wish to argue with you.

The person you where arguing with was yourself and you will grow from it.

Miss Pink and fluffy

Jonsmum said...

scruffythecat;

"Larry is a magnificent human being and seeing you toy with him is really not very nice of you."

I am not "Toying with Larry".
You don't know what this is about.
You don't know all the details. With respect, you are not in a position to judge.

Jonsmum said...

Miss Pink and Fluffy;

See my comment to Scruffythecat.

laurentius rex said...

The problem is that it seems not possible to disagree with someone without offending them.

It all comes down to the two ways of looking at disability and how one conceptualises it.

It does not have to be one's child it can be how one conceptualises oneself or as I shall later demonstrate, ones spouse.

For example let us choose a simple situation where I would hope there can be few misunderstandings.

Let us say I have just broken my leg.

I can view that as utter catastrophe or I can simply accept it is an accident I will have to deal with.

In the first place if I am over catastrophising I am in my actions demonstrating that I am internally conceptualising that disability as an affront to my notion of personhood as concieved of as being "whole" without that disability.

In the second case I am realising that to go through life without a broken leg is just luck and that I cannot really expect not to have to deal with vicissitudes from time to time.

I think my dad, though he professed to love me, did nonetheless regard my failure to come up to his expectations as an affront to his model of what family life should be, whereas my mum on the other hand was just glad that I was alive, not that we did not have difficult times either especially as I got older.

My dad further demonstrated that was his fundemental outlook in life when he failed to take account of my mums increasing disability, all he cared about was that his routine was now upset and he might have to get his own dinner or take a share in the housework, that naturally led to the break up of the marriage and my taking on the responsibilities of personal care for my mother he could not take on. That he regarded as the ultimate betrayal by his son, who should have taken his side and left mum to go into a nursing home or whatever.

My dad is dead now, and I have no ill will towards his memory. To some extent the marriage breakdown was a result of my dads own upbringing outside of a stable family, and the dissonance between his dream of creating with his wife and children, that ideal family he never had when he was growing up.

Some arguments you can't win.

laurentius rex said...

I think scruffy the cat knows me better than anyone else here, and that is not just because she is saying nice things about me.

Scruffy is a parent to autistic children too.

Scruffythecat said...

As a parent and also someone who is dxed Aspergers myself I would say that a "curbie" is a different mind frame than a parent or person who wishes to help, teach people of differnt neurological make-up.

There is a differnce.
Curbie would mean someone who tries differnt methods on there child regardless of the consequences or dignity of their child and risking their lives.

We are not monsters who say do not treat pain or suffering. Or do not not teach. That is not the message.

Now some day there maybe like I said someway to rewire the brain mechanically or something as the scientists are already researching ways to do this for people whose limbs do not work.

I saw a program on this recently on T.V.

They also talked of the downfalls of cyber research with implants in that the govt may try to create a net to have these cyborg implanted people hooked up to a network of sorts. Very sci-fi like but the ethics and morallity is always at stake and there are high stakes...

That may seem very far fecthed right now but they are researching with this wiring that is so small so it can be threaded through the body without interfering with other things..

On another note...
My mother had epilepsy... she didn't want it... she was treated for it and then refused treatment... her epilepsy subsided for many years and then it returned.. and still she refused treatment even though all evidence was that she had it,, she wouldn't believe it and risked her life and those of others by driving.. she eventually due to circumstances was forced to come to grips with her epilepsy and take medication for it..

It is curious how people think...
I do understand and I think Larry does too that some parents rightfully seek treatments for their children that are appropriate and perhaps helpful.

But what the objection is to ..
Is unproven possibly harmful treatments with dubious claims of cures...
Now if one is believes as we do that chelation cannot reverse brain wiring, than it is a mute point all that we are trying to say... To convey to others ..
As we will be so diameterically opposed to each others ideas that perhaps there will be no middle ground.... and if that is so.. then there is no point in arguing at all. It is pointless... as both mind states are convinced that they are in the right...

Jonsmum said...

Scruffythecat;

Like I said, after reading Larry's website, which I considered the most interesting and honest site on the net, I felt he was a "lovely" man who I "respected" and "admired" regardless of the fact that our opinions on autism are different.

Because of our differing views on autism and because I wanted to tell him what a "marvellous" person I thought he was, I emailed him with this, and asked him if he did not appreciate my emails, to let me know and I would not email him again. He did not tell me not to email him, so as time went on I continued to email him with messages of support when he seemed to need it.
I didn't want to put him in an embarassing situation by commenting on his blog under the name Jonsmum, as I am known for having opposing views to Larry, and several of the Autism Hub members.
Instead, I left anonymous messages of support on his blog.

***************************

"Anonymous said...
Larry,
From someone who does care about you, but doesn't want to offend you. Would you please consider going to the doctors and getting some antidepressants.
Unless you're already on them, in which case I would advise changing them.
Not those horrible SSRI's that make people worse.
The old style Dothiepin, now called
(Dosulepin).

BTW I'm not trying to dismiss the reasons why you're so depressed.
I'm just saying, extrinsic or intrinsic depression. When you get to a point when you think or talk about suicide, even if you aren't really 'serious', (only you know how you really feel), I think you could do with a 'pick me up' to take the edge off."

*************************

"concerned about you said...
Larry,
Are you feeling any happier today?"

*************************

"Anonymous said...
Hope you get what you need.

BTW, are your photographs still availabe to buy from your site?"

**************************

"Anonymous said...
Happy christmas Larry!"

**************************

"Anonymous said...
I got your photographs this morning.
They're beautiful. Even better that they looked on your site.
Thanks."

***************************

I have considered and acted in Larry's best interests every step of the way.

Now what do you think motivated my actions towards Larry?
I remained anonymous on his blog, while I emailed him privately as Jonsmum, and I have been nothing other than complimentary towards him.


Scruffythecat said;

"As we will be so diameterically opposed to each others ideas that perhaps there will be no middle ground.... and if that is so.. then there is no point in arguing at all."

You may be so diameterically opposed to others that there is no middle ground for you, but by my actions you must see that I am not.


Scruffy also said;

"Until that time maybe have some empathy for those you claim to appreciate...
Larry is a magnificent human being and seeing you toy with him is really not very nice of you."

I said you did not know all the facts, and are in no position to judge, but you have nevertheless went on to judge me in another comment you have made.

My only disrespectful comment to Larry was added to the thread over a day after I posted it, and after I had resolved this issue with Larry via emails, when there was not longer a need to publish my comment.

I had to know his opinion on whether he believed I thought my autistic son was an affront to my parenthood, because I would not have felt happy to hang pictures in my home, by a man with such a low opinion of me.
This is a perfectly natural
emotion, and Larry was in fact the one toying with me by not answering my question.

Now tell me again who are the people on this thread who are so diameterically opposed to each others ideas that perhaps there will be no middle ground.... ?

The phrase "fools rush in where angels fear to tread" comes to mind.

laurentius rex said...

I was not toying with you by not answering your question, can't you see that the very honesty that you profess to admire could only have lead to the answer I gave, and since you already had decided what the answer was when I did not answer there was no reason not to post it and so your feelings were not spared.

I was trying to avoid offence, but then the offence is obviosly in the particular perspective I have on disability in general.

Let us leave individuals out of this.

If I did not have a care for autistic children as well as adults, would I be able to maintain my position on the NAS.

The NAS to repeat is not just a campaigning organisation, it runs schools and other services, and so in my position I have to take the joint responsibility for the care of all those who are receiving direct services from the NAS. That is a strict legal and moral responsibility

I do not know your exact situation but you put yourself on the spot aswell and invited a confrontation with my outlook (and as I say that is not my unique outlook, it is part of a wider culture I consider myself to be part of)

This is culture clash, just as a Moslem might be offended by my Christian belief that his prophet is misguided and vice versa.

Anyway I shall soon call a close to any more comments on this blog as I will I suppose move on to another one.

I am autistic and we are somewhat notorios for what is called black and white thinking what you see is what you get, hence the reference to the Fleetwood Mac song, if you are likely to be offended please don't ask.

Jonsmum said...

Larry;

I had not decided what your answer would be. I asked if I would be right in assuming you view me as one of those parents "whose actions show it"?
But that does not give me the truth. I needed to hear it from you.
How can you not understand that?
Did you read my last post?
How many times do I have to explain? I did not want to have photo's on my walls by a man with such a low opinion of me.
You say you were trying to avoid offence, but the offence to me was that you would not give me a straight answer when you knew why I needed one.

You say;

"Let us leave individuals out of this."

Your friends have addressed me, and made several incorrect and insulting presumptions about me, so surely I should be given the courtesy of replying back?
Or does it only work one way?

You also say;

"The NAS to repeat is not just a campaigning organisation, it runs schools and other services, and so in my position I have to take the joint responsibility for the care of all those who are receiving direct services from the NAS. That is a strict legal and moral responsibility"

Well that means me Larry. Don't you have a moral responsibility to allow me to respond to comments that are insulting to one your clients?

Scruffythecat said;

"As a parent and also someone who is dxed Aspergers myself I would say that a "curbie" is a different mind frame than a parent or person who wishes to help, teach people of differnt neurological make-up."

As a parent of an autistic child, I am apalled at this twised assumption.

How dare you infer that people who wish for a cure for autism have a different mind frame and do not wish to help, or "teach people of differnt neurological make-up."

Let me tell you that I have fought tooth and nail to get the right special needs school placement for my son. They are very scarce in the UK and the inclusion policy here is crippling mainstream schools that are buckling under the strain of the volume of autistic children they are illequipped to educate or cope with.
Children who would better educated in a autism specific class are being forced into mainstream education, where they are segregated, alienated and bullied.
I stood my ground, dug my heels in and got the appropriate educational placement that my son has a right to.
He attends a special need school and is in an autism specific class who use the TEACH and SPELL approach.
I also got my son into a special needs preschool nursery placement, a special needs community disability nurse, occupational therapy, speech and language therapy, used the PECS communication sytem, attended Hannen training courses and More than words.
That's 100% coventional intervention, and 0% biomedical.

Believe me, my son would have none of these services if it had not been for his "curbie" mother "who wishes to help, teach people of differnt neurological make-up."

I don't want a "perfect child" and I don't care about academic qualifications. I just want my son to live a happy and fullfilled life without his crippling disability.

Scruffythecat also said;

"There is a differnce.
Curbie would mean someone who tries differnt methods on there child regardless of the consequences or dignity of their child and risking their lives.

We are not monsters who say do not treat pain or suffering. Or do not not teach. That is not the message."

If you believe the first part of your statement, then you are a monster.

My fault as I see it now, is that I am a very poor judge of character.