Sunday, December 03, 2006

Notes on self-injury

Below are a few pieces (not very organized) of my informal and personal writing about autism and self-injury. I wrote these pieces for various reasons and various people, and they go back a ways. The last piece, which I wrote a long time ago on the TMoB board, was also included as part of my Statement of Particulars in my Canadian Human Rights Tribunal case.

The science in this area is extremely poor (as was testified at the Tribunal). When I wrote the below, Keen (2005) and Keen et al. (2005) had not yet been published. Both these papers support my informal observations in the area of autistic communication, as does the success of interventions designed to train parents to respond to their autistic children's communication (e.g., Aldred et al., 2004). Gernsbacher (2006) is an excellent review of this area. I also strongly recommend this, re the origins of so-called "challenging" behaviours from an autistic viewpoint.


Self-injury doesn't happen out of the blue, though it's often reported this way, and doesn't result from "autism". I've written a bit about self-injury (my self-injury has been an issue in many legal cases). It might help to remember that privacy is an issue (meaning, it bugs me to write about self-injury, even though it's probably important that autistics write about this), and also that a lot of autistics don't have or can't reliably achieve privacy, and this has consequences. Two things essential to a lot of autistics: privacy (being able to hide) and freedom(being able to leave), and we're extremely likely to be deprived of both.


I disagree strongly with the kinds of functional analyses of behaviour I see all the time in ABA programs, where the behaviour analyst makes all kinds of assumptions about the autistic, based on their ignorance of how autistics perceive the world and learn from it, and their total dismissal of our communication. This results in "last straw" behaviours. Your child communicates accurately to you a basic need, over and over, maybe ten or twelve (almost always this number) times. This is ignored, both because his kind of communication is considered "wrong", and because what he needs, which is different from what you need, is also "wrong". Then, having been honest and conscientious in his communication, and having been crushed by repeated failure, the kid bangs his head or hits someone or breaks something.

This is then the ONE behaviour that is noticed and analyzed. Then the child is taught how to communicate (he communicated perfectly in the first place, so really he is taught his own communication is wrong), and what he is allowed to communicate--not his real need (and this is almost always "need to know something", "need this small piece of information", or "need many, many pieces of information" when it is not "I am in pain and must deal with this") but the need everyone else has decided he was expressing when his behaviour became unacceptable. This happens to autistics who can talk, and talk very well, and are even called articulate, so speech (and speech is different from language or communication) is not the issue.

One of the hardest things that happens to some autistics is that after a great struggle to produce speech, we find it doesn't work either, it just continues to be exhausting. This is because our needs are different from non-autistic needs and our needs are called "wrong". And I mean what we need in order to learn, to achieve, to interact, to develop--our needs in all these areas are different.


I was asked in a documentary why I hurt myself. This was some years ago; I was just at the point where I was starting to realize I was not totally appalling because I was autistic. I was in an "environment" where no other conclusion was available.

Anyway, what I said when I was asked was that it (hurting myself) was my vocabulary. I have to add at this point that the fact that I hurt myself is obvious, even though I hurt myself in private. I have scars.

Then I said that I'd worked hard all my life to learn language. This was very, very difficult and took pretty much all my resources. But I learned, and I learned two languages. Then I found out this language thing didn't work; I was not good enough at it; I somehow did it wrong. My very accurate words weren't heard. I was and am frequently told I've said things I've never said, and haven't said things I have.

I hurt myself to re-establish some form of accuracy. I establish something I've absolutely done. This is a way of regaining accuracy. So while it may seem that I'm frustrated, that isn't the case. Confusion, yes to some degree. But there is an essential need to re-establish, after repeated failed communication, the existence of accuracy, or at least the possibility of accuracy, in order to continue to function at all.



Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: pilot randomised controlled treatment study suggesting effectiveness. Journal of Child Psychology and Psychiatry, 45, 1420-1430.

Gernsbacher, M.A. (2006). Towards a behavior of reciprocity. Journal of Developmental Processes, 1, 138-152.

Keen, D. (2005). The use of non-verbal repair strategies by children with autism. Research in Developmental Disabilities, 26, 243-254.

Keen, D., Sigafoos, J. & Woodyatt, G. (2005). Teacher responses to the communicative attempts of children with autism. Journal of Developmental and Physical Disabilities, 17, 19-33.


Unknown said...

Ms. Dawson

You keep describing yourself as an "autistic" and purporting to speak for autistic persons. Your autism, whatever your diagnosis might be, is much different than my son's classic Autism Disorder. His abilities and understanding of language are very limited whereas you appear before political committees and make representations to journals and courts.

Since you purport to speak for autistic persons what is your precise diagnosis on the Autism Spectrum of Disorders?

Anonymous said...

I particularly relate to the difficulty that carers and parents have in correctly understanding, interpreting and perceiving what the child [autistic] is trying to convey [communicate] I suspect that all too often it is our [the adults] mis-interpretation and mis- understanding that contributes to the frustration of the child who is attempting to communicate. best wishes

Anonymous said...

Ms Dawson has been diagnosed "autistic disorder," and it's been confirmed by several professionals, she's explained this in various places on the Internet. Her diagnosis was accepted as a fact when she spoke before the Supreme Court of Canada, was it not? I would think that you would know that. You are a lawyer aren't you, sir?

This was an interesting comment from Dr. Laurent Mottron about Michelle, apparently he knows her well enough to say the following:
"A precision: Michelle Dawson does not work as a research assistant in
my lab, but as a researcher. The work of re-reading of our papers she
also acomplishes is not one of editing or proof reading, but of
raising incorrect assumptions, imprecisions or normocentrisms. She is also involved in most research projects runing here, and is now
incorporated in the authorship of papers coming from our group. Papers
with her as first author will follow in a close future. I consider her
as a world-class specialist of at least three fields, human rights
issue re. autism, ABA issues, and cognition in autism.

L.Mottron, M.D., Ph.D.

Posted by: L. Mottron at January 23, 2005 01:40 PM"

He also says she's autistic. I've heard him say at IMFAR 2004 to the assembled audience that she's "autistic." I have met Michelle, and I can tell you that she's autistic. Her diagnosis is not PDD, nos or "atypical autism" or Asperger's. I didn't know Michelle when she was 3 years old, but I think she was echolalic and didn't speak normally. As you can tell from this blog entry she says it took her a lot of energy to get speech to the point of being reliable.

How nice of you to drop by and interrogate her about her diagnosis, though. Such a nice man.

In case you decide that you are rude enough to check with her father, you might be able to track down his contact information and demand to know what she was like as a child.

His letter about her autism is here

Michelle's father, here.

Michelle and Mottron were interviewed on CBC's Quirks and Quarks, did you listen to the interview? She's been interviewed in a few Canadian newpaper articles, too.
It's probably a really bad idea to be rude to him or Michelle's mother, though. But you're the one with all the social skills, I guess you'd know.

And she doesn't "purport to speak for autistic persons." If you can find a place where she has said she does, let us know. OK? Thanks.

Anonymous said...

"It's probably a really bad idea to be rude to him or Michelle's mother, though. But you're the one with all the social skills, I guess you'd know."

This paragraph should have followed the link to the info about Michelle's father.

Excuse the bad editing skills, please.

Josh said...

NB, ignoring for now exactly how rude it is to disbelieve a reasonable viewpoint claim, and request intimate details of an individual's entire lifespan for your armchair diagnostics; Mrs. Dawson's symptoms have been stated to show autism as a matter of fact in a court case. The DSM and ICD only require some degree of developmental difficulty (with the DSM specifying language).
The fact that she was able to deal with neurologically average methods of speaking and life is a fact worthy of celebration, not a reason to completely ignore her viewpoint.

I don't believe I've seen her state she speaks for the entire autism spectrum, and a quick google search provides nothing but her condemnation of groups which attempt to speak for autistics.

She does, on the other hand, provide a viewpoint, and AFAIK, she's the single most experienced individual on any range of the autism spectrum on the matter of autistic human rights.

Alyric said...


Are you trying to compare a ten year old to a 40+ woman in terms of development? Are you also implying that a ten year old autistic does not develop and if so, I'd like the references for that one.

I could ask just what are your qualifications in terms of the practice of law, simply because I disagree with your thinking on some point? It's not a compelling strategy in my view.

I am being just a tad facetious, but seriously, do you honestly think that an autism researcher would claim to be autistic and not know what that means? Or, if you like to cling to the straw of Michelle being somehow deluded, that Dr Laurent Mottron could be similarly deluded?

Wake up to some reality here. On any measure of civility, you are simply being rude.

Thought for the week: The way some parents have so many problems with an adult autistic viewpoint seems to lend some point to an old idea of mine that a limited theory of mind is not the sole province of autistics.

Michelle Dawson said...

Hi Mr Doherty,

You've never met me, and I never see you or any other autism advocates around when people decide I'm too "low-functioning" to be at large. My abilities in many areas are very limited or absent. There are contexts in which I can't function at all.

I'm extremely fortunate in my choice of parents [grin]. I've been less fortunate in other areas and at other times in my life. I was brought up in an era where "devastating" and "tragedy" meant a child almost dying of tuberculosis (as happened in my family), not a child who was extremely delayed in some areas, while being advanced in others.

A disproportionate facility with written language, with decoding preceding comprehension, is strongly associated with autism, and was identified in the first description of autism as a condition (Kanner, 1943; Grigorenko et al., 2001).

An extreme scatter of abilities compared to a typical baseline is characteristic of autism. Autistic adults with normal-level Wechsler IQs (impossible to achieve without good language abilities) have, by typical standards, the measured social adaptive abilities of four-year-olds (Klin et al., 2003).

My diagnosis is autism. It is not Asperger's or PDD-NOS or Rett syndrome or Childhood Disintegrative Disorder. I've been diagnosed by scientists in three different major universities. I've had to prove my diagnosis in multiple legal and quasi-legal proceedings. My difficulties in communication were agreed to by everyone in the current Tribunal case (on both sides). It was for these difficulties that I asked accommodation (a cost- and trouble-free accommodation).

I don't "purport to speak for autistic persons", a common lie spread by autism advocates, except in a situation where individual autistics have explicitly given me that kind of support of their own free will (which has happened). I do argue science and ethics, and am never responded to at that level by autism advocates.

Finally, while this is not accepted by autism advocates, disabled people do accomplish things, as disabled people. Accomplishing something does not mean we are not disabled. A successful deaf lawyer is no less deaf than an uneducated deaf person who has never worked, and deafness, like autism, involves atypical communication. Not so long ago, it was assumed that deaf people were also intellectually disabled. Fortunately, the poor status and outcomes of deaf people were recognized as products of gross biases in the science (something rampant in autism research; Gernsbacher et al., 2006), as well as gross prejudices in society (ditto, re being rampant in autism). And things changed, for deaf people.

Larry Arnold PhD FRSA said...

What really annoys me when some poster speaks about there child having "classic autism" is that it would appear from my reading of Kanner, that his patients must have had something else, particularly considering that his very first patient was hyperlexic and not speech delayed and went on to University.

Anyway it is pointless arguing because the reality of autism I have discovered is that the reality is solely in the eye of the beholder, who constructs autism according to whichever way they want to see it.

There are two basic autisms, that is to say, the label of autism which is a social phenomenon in that the way it is used is in the domain of sociology, and the underlying condition that gives rise to the social phenomenon.

All this arguing that so and so says whoever is autistic is silly in the extreme and does not win any arguments when it is clear that neither side will shift.

I say potayto and you say potahto

kristina said...

Thank you for this; it confirms much that I had speculated to be the case regarding our son.

notmercury said...

Thanks for that Michelle,

Any suggestions on ways parents can try to understand what a child is attempting to communicate when the message isn't immediately apparent?

One of the hardest things can be trying to figure out the source of pain or frustration when it feels like random guesswork at times.

Unknown said...

Ms Dawson

Your supporters seem to take great offense in my simply asking what your specific autism diagnosis is. Since you speak from personal experience in your posts and purport to interpret autistic experiences then that is a reasonable, and necessary, question to ask. If you say your diagnosis is "Autism Disorder" then I accept that statement as fact. Hopefully that will address some of the animosity expressed by your regular posters to this forum.

Since you speak about self injurious behavior can you offer, regardless of diagnosis, the perspective of a person with Autism Disorder who does not have your intellectual and communication abilities?

Unknown said...

Alyric I disagree with your description of my remarks as rude. Ms Dawson speaks from a personal perspective on autism issues. As you know there are a number of autism spectrum disorders. I simply asked here to state what hers is. I accept her answer to that question.

As for the difference between a 10 year old and a 40 year old I will tell you from direct observation that simply aging does not necessarily improve an autistic persons skills and abilities. As a former provincial Autism Society president and an autism advocate I have visited with autistic adults in a mental health facility in New Brunswick. I can tell you from direct observation that they are not more advanced because of the aging process. And the conditions under which they live are frightening.

Why don't some of you on this forum talk about how rough life is for some of these severly disabled autistic adults living in mental health facilities when you talk about autism issues?

jypsy said...

"Autism Reality NB said...
Ms Dawson
Your supporters"

Definition of Michelle's supporters in this instance please?

I've seen the term many times. Are those of us who support Michelle on any given issue or point "Michelle supporters"? Or is the use of this term always specific to the discussion?

Anonymous said...

Autism Realty NB: Why don't some of you on this forum talk about how rough life is for some of these severly disabled autistic adults living in mental health facilities when you talk about autism issues?

Is the problem that too rosy of a picture is being painted for your taste? Would you prefer to read a blog that focuses on more of the negative aspects of disabilities? I'm sure you can find one with little effort.

I don't know you, your work, or your positions concerning autism but I read your comments as more than simple and innocent inquiries.
I don't see your suggestions here as constructive advice so much as criticism of anything falling outside your preconceptions.

If you prefer to interpret the replies from "Ms. Dawson's supporters" as animosity, perhaps you can find a few key phrases in your own comments that might appear to be offensive and rude to an objective third party.

jypsy said...

Why don't some of you on this forum talk about how rough life is for some of these severly disabled autistic adults living in mental health facilities when you talk about autism issues?

We have been and continue to. And we do more than just talk about it.

20 May 2005

Some of us here know each other from other lists, boards, forums and personally and are no doubt involved in, and talking about, many issues that you are unaware of. Amanda has had a lot to say about it, having lived it, have you chosen to listen? Have you read Getting The Truth Out? Would you care to offer an opinion on it?

Anonymous said...

As far as I'm aware, Michelle rarely ever speaks about Autism from her own perspective; it's nearly all stuff that's in published science. If an example of constant references to personal experience is needed, look no further than the many Autism advocates that justify horrifying claims about Autism/Autistics on their own personal ancedotes.

I believe the reasons why others took offense to Mr Doherty's question is the same as mine with exception to those who stated otherwise: that very same question is often prologue to a fallacy. It's one that doesn't have a specific name because it's a mix of many fallacies.

Mr Doherty claims Michelle is using a personal view of Autism. She isn't.

Mr Doherty has been trying to highlight the differences between Michelle and his son, so it is fairly obvious the answer he was hoping for was that Michelle's diagnosis would be different to his son's. It isn't.

Mr Doherty is certain that his son's Autism is different from Michelle's Autism. There's no answer for this because whilst Autistic people are not uniform, there is no clear line showing 'different Autism'.

We had another ancedote arguing that age does not cause development, in response to the comment that he was comparing an adult to a pre-adolescent. The adults he spoke of were not exactly in a neutral enviroment however. He disregards the effect the facility they were in.

And we do actually talk about adults in institutions. Over on the NAA main site we've had many discussions about institutions destroying Autistic functioning and ABA proponents in Canada insist this is the only option if an Autistic is not having never-ending ABA. Of course they have to; if they don't make this self-fulfilling prophecy that every Autistic without ABA must be locked away work: they no longer have destroyed Autistics created as a consequence of being put in an institution to be portrayed falsely as an example of what happens to an Autistic without ABA.

There are plenty of Autistic people that do not have Michelle's intellectual and communication ability, but that does not mean they can't speak for themselves by far. Would you dismiss what they said purely on the grounds that they were able to say it at all?

There is no such thing as an Autistic that doesn't communicate, at least not because of Autism. No ancedote no matter how emotive or angry will prove different, only the science will and Canada's advocates from what we've all seen are in deficit with that.

Anonymous said...

Second anonymous(obviously a different person to the first anonymous)said:

"When we offer Michelle constructive advice, she deletes it. We might as well just criticize her warped views."

Should we assume that this is a representative sample of 'constructive advice'?

Anonymous said...

"When we offer Michelle constructive advice, she deletes it. We might as well just criticize her warped views."

That's almost certainly John Best Jr. purporting to provide constructive advise, when in fact he knows all his comments are deleted by Michelle because he's the biggest troll the autism community has ever seen. I believe the only comments Michelle deletes are his.

It should give NB pause to see what sort of person is supporting him here.

Josh said...

"As a former provincial Autism Society president and an autism advocate I have visited with autistic adults in a mental health facility in New Brunswick. I can tell you from direct observation that they are not more advanced because of the aging process. And the conditions under which they live are frightening."

I've seen 40-year-old individuals with Down Syndrome who were institutionalized or otherwise put in situations which did not provide adequate support, all of whom were believed to have no chance of ever learning to use the toilet on their own, never mind having a normal life. The original name for the condition was "Mongolian Idiocy".

Now, of course, the vast majority of those with trisomy 21 are able to graduate high school - a notable portion are capable of going to college - and live decent lives.

We're talking about a group defined by communication difficulties. That they live in frightening conditions only reinforces non-communicative behavior. I'll admit I can't talk from personal experience: all I know about is the higher functioning end of the Asperger's cycle. But when people are trying to teach by yelling words you don't understand, it's not an easy route to take.

Michelle Dawson said...

I don't have much time today, and I wanted to answer the genuine question (NM's) rather than have to tell Mr Doherty again that if he does not read my work, he should not pretend to be an authority on it.

Mr Doherty doesn't know anything about my work. He hasn't, e.g., read my Auton written argument, or any of the writing I did around the Auton case. Or any other writing I've done, including The Misbehaviour of Behaviourists. If he'd read any of my work, he'd find plenty about institutionalization. Same if he bothered to read any of the links I've provided.

I looked extremely "low-functioning" when I was locked up. What did you expect, Mr Doherty? That autistics would flourish in institutions?

Institutions destroy people. Autistics have been saying, in public, over and over, DON'T put us in institutions.

I provided for Mr Doherty many links that deal with institutionalization. Stuff written by those autistics in institutions who Mr Doherty so casually writes off.

That's autism advocacy all right.

Here's Mr Doherty and other prominent autism advocates, out there saying that autistics who have not had the one treatment they promote, starting as young children, must be institutionalized. That's now in our jurisprudence. Don't forget the eminent autism advocate who states we have to live in institutions, live in restraints, and have our teeth pulled. Do I see any autism advocates protesting against this? Nope, just applause. Well done, FEAT, making the world totally unsafe for autistic people.

More and more of us are at risk of being institutionalized, and autistics who are institutionalized are much more likely to stay there and be doomed. Because institutionalization is doom. And institutionalization is what all autism advocates demand for all autistics who have not had ABA/IBI from an early age.

I don't use the word "hypocrisy" lightly, but it's astounding to me that autism advocates, who have done such a tremendous job of publicly insisting that autistics must be institutionalized (and abused, once we're there--Mr Doherty, have you ever been in restraints? I have, and it's torture, no other way to put it), then tell autistic people who have lost their freedom because of this that we don't give a damn about autistics in institutions.

I can't remember when I've been angrier.

And now Mr Doherty goes to the institutions he promotes as the proper home for all autistics who haven't had the one treatment he promotes, and wonders why these autistics are doing poorly.

Unreal. Beyond hypocrisy.

Let's say that Mr Doherty will never, ever read any of the information we provide to him, any of our writing about institutionalization and what it does to us, and our own demand that NO autistic (or anyone else) belongs in an institution.

There's always the science, and I've written about that in one of the publicly available articles Mr Doherty will never read, and also in an encyclopedia entry that's under review.

There's excellent descriptive work and pretty good data showing that institutions destroy autistics. That's if Mr Doherty doesn't want to take our word for it.

But autism advocates not only refuse to read the work of autistics, they refuse to read the science. And they insist they're right about everything, about our own lives, about our own cognitive processes, about our own work, about the science they never read, etc.

Meantime, autistics everywhere suffer because important people like Mr Doherty have widely disseminated the view that we're write-offs who have to be institutionalized.

Oh, and autism advocates also spread the word that unless autistics have been in ABA/IBI from an early age, we can't communicate or learn or understand. Mr Doherty, do you know what it does to autistics (or anyone else) to be treated as though we can't communicate, learn, understand, etc? And to be there in the room when they decide to lock you up, and they talk about you like you're non-sentient, because they just know--thanks to autism advocacy--that autistics are write-offs?

And then Mr Doherty comes along and tells us that we don't give a hey about institutionalized autistics.

Nope, I don't think I've ever been angrier.

Michelle Dawson said...

By the way, when I'm a bit less angry, and have a bit more time (later today I hope), I'll be back to address a few other things that have been raised here, including NM's constructive (and relevant) question.

Michelle Dawson said...

Forgot to provide another piece of writing Mr Doherty will never bother to read, a recent entry about institutionalization. That's on this blog. And it has "institutionalization" in its title. Here it is.

Anonymous said...

I'd be willing to bet outcome studies are substantially skewed by institutionalization (and many other self-fulfilling prophecies).

Anonymous said...

Mr Lawyer from NB and proud autism advocate,

The reason I took your words asking for Michelle's diagnosis as those of a troll looking to aggravate Michelle, or otherwise cause trouble, is that it just seemed so very likely that you would already know what she says her diagnosis is.

It seems like you wanted her to say, "well, really I just think I'm autistic," so you could jump on that and say, "Aha! I knew it!!!" or maybe you wanted her to say, "I'm autistic," just to waste her time. Sick minded people do things like that. Ask people to answer obvious questions just to mess with their minds.

Maybe lawyers are even trained in that kind of sick twisted word-play, I don't know, but I imagine they are.

I'm really sorry to be using the words "sick and twisted" so often in relation to your comments here, Mr. Lawyer. No offense intended. Of course.

One more thing mister possibly sick and twisted word twister, some of us might have PDD,nos or Asperger's diagnosis but might still have been locked up for our weird behavior (I haven't but Asperger's people do get locked up, and given diagnoses like "schizophrenic" often enough). Some of us might seem really high functioning and so forth so you could spit on our opinions on what kids like your son *might* want or need, but then again some of us are also parents of kids like your son.

Usually being the parent of an obviously disabled autistic child grants one unlimited credibility to speak for autistics everywhere, but that credibility evaporates if the parent of an autistic child is also on the spectrum AND has the unmitigated temerity to question the status quo coming from atuism "adcovates" like Mr. NB lawyer.

Anonymous said...

Lawyers are indeed trained to ask obvious questions in the courtroom, so as to anticipate the witness's answers and arrive at the desired result.

That's the first rule of cross-examination: never ask a question if you don't already know the answer (or have a very good guess as to what it will be).

Anne said...

As I lawyer, I would add that if *I* were representing the family of an Asperger's teen in an education case, I wouldn't be making the kind of public statements that Harold is making here. But that's just me; I can't speak for all lawyers, of course.

Anne said...

a lawyer

Michelle Dawson said...

Both Ms Clark (re the great variety of diagnostic labels under which autistics have been institutionalized and abused--see the AS people who were in secure facilities in the UK, for years and years, including an AS woman who was, after being institutionalized, was described as being a "bloated, twitching wreck"), and Anne (re Mr Doherty's public statements) have already covered a few things I wanted to add. Thanks.

I'm not sure it's worth pointing out that my writing is rarely personal. While there've been a lot of reasons why I've had to write about self-injury from a personal viewpoint, the obvious reason is that it's been publicly (e.g., in the media) stated so many times by autism advocates that I don't have any experience with self-injury.

Like many autistics, behaviours I have (and skills I lack) are used to horrify the public about autistic people, while autism advocates write publicly that I don't have any experience with these behaviours or difficulties and therefore don't know anything about "real" autism.

On the other hand, Mr Doherty has no trouble accepting and promoting an autistic adult who has multiple university degrees (I've never attended university as a student), because this autistic agrees with Mr Doherty.

Another thing I want to comment on is Gatt Suru's invocation of the higher functioning end of something or other.

It's become nearly impossible to use the word "spctrum" because it's so commonly and falsely assumed that the spectrum is a hierarchy. It isn't.

Should it be claimed that autistics reside on some "higher" end of the spectrum than PDD-NOS and AS people, because autistics are dramatically less likely than these two other groups to have additional diagnosable conditions?

I hope not. I work in a group where AS and autism are differentiated, but this has to do with differences in developmental trajectories and measureable differences in cognitive processes. There are areas where autistics have measurable advantages over AS people. So is one "higher" than the other? No, not unless you prejudicially place a high value on certain traits and abilities, while devaluing others. And my own work and lots of other work shows that assigning a level of functioning in autism (in the strict and correct sense of measured intelligence) is extremely problematic even at any given point in time.

Michelle Dawson said...

Finally, for NM...

One thing no one has been very interested in the science is what kinds of information and materials young autistic kids have access to.

That's even though there are loud hints that access to information and materials plays a dramatic role in the development, well-being, and outcomes of autistics (Miller, 1989).

Another thing no one has considered much in a practical sense is the need to figure out what aspects of an autistics' "preferred" materials or activities is responsible for these things being preferred. Not knowing this may mean that information is provided or removed in arbitrary ways. Arbitrariness is a big problem for autistics.

So there's this huge (measurable) contrast between how autistics and non-autistics analyze information, and therefore, in the kinds of information we need (in order to learn, develop, function, etc), and no one has much considered the consequences of this.

It's hard to explain how resistant some non-autistics can be to providing the kinds of information autistics need in order to function in a particular context. This information may be considered outlandish or it may be assumed that no one would need information that basic (or that much of it, or in those arrangements, etc).

At the Tribunal, I made a simple request for accommodation, which was that when I asked a question, it should be answered, even if the answer is "there is no answer to that question" or "I'm not allowed to answer that question" or whatever.

To put it in legal terms, everyone else attending the hearing thought I was nuts, and I didn't get that simple accommodation. This in turn has cost enormously in time and effort. But in this and another case, it was simply not believed that this was a kind of information that anyone would need. And this is the kind of information I need in order to function. I need much less in the way of accommodation at the Tribunal than the two other parties (who, e.g., require simultaneous translation, which costs a fortune), but because my minimal needs are considered outlandish, what little I need has been refused.

I think this is a completely typical autistic experience, for children and adults. You can imagine this might have consequences.

I also think that when autistic children are successful in receiving the kinds of information they need, they also become more successful in other kinds of communication. The goal of parent-training programs that teach how to respond to autistic children is to get parents to be less directive ("controlling and intrusive"), and more responsive.

In my view, it's also important to have a good knowledge of why autistics are different from non-autistics at the level where it counts--which is cognitive processes--and also to know a bit about the very atypical ways autistics acquire information. Some caregivers and teachers achieve this knowledge via observation of a specific child, but this is more the exception than the rule (and with all the false info about autism out there, it gets less and less likely that autistics will be observed and responded to accurately).

My favourite and highly recommended popular exploration of the importance of cognitive science in figuring out autistic kids is here.

Anonymous said...

Miss Clark, Alleged autistics who are anti-cure have proven their own insanity and should be locked away and silenced.

Anonymous said...

Mr Best again?

May I also note that whilst many Autism advocates take issue with people that disagree with them, they do nothing to distance themselves from comments made by some like John Best. I've never on all of the many forums on the net I've visited witnessed anti-Autistic advocates take issue with statements akin to that.

I am however noticing online Auties and Aspies challenging each other when one decides to make alarmist or derogatory remarks. I think that's a trend that started among the circle of contributers to No Autistics Allowed. I hope it continues because being rational and polite really infuriates those advocates to no end.

Michelle Dawson said...

I'm going to leave the comment from "Reasonable" in place, as being representative of some or many varieties of autism advocacy.

Anonymous said...

yes, Reasonable's comment:
"Miss Clark, Alleged autistics who are anti-cure have proven their own insanity and should be locked away and silenced.

8:40 PM "

Should be left in it's place.

I want to know if the lawyer from NB agrees with it. I wonder if "silenced" means that they should be, um, deceased-ified? Just wondering. John Best Jr. autism advocate has been known to wish death on, or make death threats to people he disagrees with or who come between him and his dreamed for lawsuit payoff.

Anonymous said...

And you think that goal can feasibly be achieved by not actually being involved in any reasonable discussion but by posting emotive and fact-free comments to blogs?

Anonymous said...

You post purely to provoke an equally aggressive reaction. If we were unreasonable we would fall for it. You haven't backed up any facts except with the insistence that they are facts.

Michelle Dawson said...

If I ever have time, I might post some day about the standards we (a bunch of autistics and non-autistics, who do not necessarily agree with each other) set re respectful discourse over on the TMoB board over the course of several years, and how this contrasts with the standards of autism advocacy, and in general about the nature and quality of the public discourse about autism.

In the meantime, I expect people who post here to have something to contribute. Those who have nothing to contribute can write what they wish elsewhere.

notmercury said...

Thank you so much for the thoughtful reply.

Concerned Mom said...

Should we be allowing our autistic 13 year old son to leave situations when he is unwilling to do what his parents or caregivers ask?

Are we to let him do what he wants whenever he wants?

How do we teach him that parents have rules?---when he doesn't get his way he escalates into self-injury

Should we let him self-injure?
Thank-you from a concerned mom.

Michelle Dawson said...

Hi Concerned Mom,

If you read the post you are commenting on, you might consider that autistics are routinely and persistently put in situations in which nonautistics would behave in unacceptable ways.

I suggest that autistics should not be put in these situations.

When autistics' communication is consistently responded to, and when we have a lot of access to situations (including the availability of information and materials) in which we are likely to do well, we become more competent at dealing with situations that are very difficult for us.

Many autistics can deal with difficult situations (situations in which we are likely to function poorly, to be scared, confused, in pain and/or immobilized, etc.) for short periods of time and/or sporadically. This is the case for me. Asking me to constantly deal with some situations is like asking a typical person to go to the dentist every day to have a lot of serious work done. Most typical people can deal with some dental work now and then. Dealing with a lot of it every day is another thing.

Assuming that autistics are wilfully misbehaving in order to get our own way, and that we are oblivious, is not a good place to start in providing us with situations (including the availability of information and materials) in which we are likely to do well. Nor does it help us deal with situations that are difficult for us.

Ettina said...

"Should we be allowing our autistic 13 year old son to leave situations when he is unwilling to do what his parents or caregivers ask?"

Depends on the situation. If he's upset to the point of self-injuring about it, you should seriously consider how important it really is that he do as you say. Don't make the mistake of persisting in a demand you know isn't worth it just so he won't learn that self-injury gets what he wants. Of course, sometimes it is worth it, in which case your goal is to get him to be as calm as possible while doing it.

"Are we to let him do what he wants whenever he wants?"

Not necessarily. If it's something you'd like him to do, but not really essential, and he gets upset about it, don't push it. But if it is essential, that's different. For example, whether he stims or does 'appropriate' play with you is not an issue worth provoking him to self-injury over. Whether he stays by your side or runs out into traffic is.

"How do we teach him that parents have rules?---when he doesn't get his way he escalates into self-injury"

Firstly, I've worked with several self-injurious kids, and self injure myself, and if anyone likes self-injuring, it's very rare. In every case I've seen, it's a last resort. The child doesn't like acting that way, and if they had a better option they'd take it. I suspect your son knows you have rules, but for some reason he can't follow them. Becoming more aware of his communication, helping him learn more ways of communicating, and revising your expectations (not abandoning them, but lessening them until he can deal with them better) will probably do a lot to help. When he actively is self-injuring, your focus should be on a) calming him down and b) keeping him safe.

Anonymous said...

Ms Dawson, just a quick question, if you will.
As an autistic adult, what sort of treatment do you recieve, if any?
Or do higher-functioning autistic persons not need as much treatment?
I'm a student trying to do research for my highschool psychology class, and I cannot seem to find any answers on the web.

Michelle Dawson said...

I've just seen the message from Anonymous.

No, I'm not going to answer that question here, for lots of reasons. Sorry.

Anonymous said...

Look, unless you live with a severely autistic person who exhibits chronic and pervasive self injurious behavior you should be very careful to speak about a behavioral in which is not the same for other autistics. The reality I face with my autistic son is extreme and should not be ignored by others in the autism community. In fact, if researchers were smarter, they would see that by learning more about severe autism, they would learn more about autism, as the worst cases are always the most telling. Self-injury among autistics comes in different forms. A kid who pinches himself without causing tissue damage is a whole lot different than my child who slams his fists into his head so hard he can cause a hematoma within 100 hits, if they aren't controlled by physical restraint. Also, you claim sib is a form of communication. Only sometimes. For example, my son awakens from a sound sleep and IMMEDIATELY goes into a self abusive frenzy as you can see on You Tube under autism and self injurious behavior. I'm getting real, real tired of people forgetting about the severely autistic population and the hardships associated with this. Good for all you high functioning folks, I'm glad you're blessed with a voice to express yourself, but don't you dare try and ignore the realities or action needed to protect and serve the severely autistic populations out here that are increasingly being abused and isolated and ignored by these freaks of nature who hijack the autism label and really have ADHD kids.....thousands of kids with adhd are mislabled autistic, that's why they "grow out of it."

Michelle Dawson said...

I've been required to write and speak about self-injury, due to my severe self-injury having become a legal issue.

I disagree that only nonautistics who have specific non-science-based views about autism should be allowed to speak and write about self-injury in autism.

Anonymous said...

Go to you tube and type in autism and self injury to see a very complex case of autism and self injurious behaviors.

Michelle Dawson said...

I've had my own self-injury used as a spectacle, or at least, that was the intention.

This was an attempt by autism advocates to exploit the terrible, insupportable situation I was in. Autism advocates did not do this to help me in any way. Instead their goal was to further their own agenda of spreading fear and dread of autistic people.

Autism advocates had no concern whatsoever that I was in a terrible situation, except that this could be exploited as a way of showing how appalling autism is.

I don't think this is okay. I think it's totally wrong.

To repeat myself: "autistics are routinely and persistently put in situations in which nonautistics would behave in unacceptable ways."

And: "I suggest that autistics should not be put in these situations."

Anonymous said...

While I respect the comment on people with autism are trying to communicate thru sib and aggression, this behavior SHOULd be discoraged. I have a 11 yo with sib and aggression. I realize that you feel that behavior should not be changed as ppl with autism communicate this way, however this is EXTREMLY dangerous and MUST be stooped and be provided with appropriate mean of communicating. This does NOT change the person but gives them ways to tell what is being communicated so the issue at hand can be resolved instead of hurting themselves. There are other ways that are positive forms of expression. I say yes to being yourself but a HUGE NO to communicate to hurt! It must be stopped in order to cause continued injury In some cases can causE much damage!!