Edited by author 09-13-2003 04:57 PM
Post your comments on Bettelheim's Worst Crime, Autism and the Epidemic of Irresponsibility.

Hi,

This article is fantastic. I hope that many people are able to read it.

Camille - 44, AS, mother of an adult child also on the spectrum

so, how do we all act together to enforce accountability?

Edited by author 09-15-2003 08:07 PM
merlin, IMHO the first step would be (the old saw), stand up and be counted...which applies to professionals as much as it does to autistic folk...transparency would be a great help in sorting this mess...

I know little about autism but I cetanily relate to your perspective because I had polio at age 4 1/2 months and relate to the experience of everyone panicking to combat and fix the polio while simutlaneously leaving me, the indiviual with it, out in the cold. I particularly found it to be abuse by the medical profession. Please keep fighting!

Edited by author 10-21-2003 08:02 PM
I am Autistic, age 48, a successful nurse manager, and proud of it. Nearly ALL the pain and suffering I have endured has been at the hands of "normal" people, intolerant and ingorant people all. I feel as the Ugly Duckling who lived a life of abuse, only years later to discover he never was a duck at all, but something other, something good, nay, something wonderful. And I wonder what his life would have been like if he had been raised among his own kind to begin with. If autistic children could be raised among our own -- what a concept.
I don't want to be "cured". I am not ill. Try as you might, you can never turn a swan into a duck, and why should you want to? This is what autism treatment strives to do: make us something we are not, while making us ashamed of what we really are.
I well understand the reluctance to come out of the closet: in the US, ASD is classified as a mental illness, "childhood schizophrenia". But to make change, we MUST come out. I hope your message reaches far and wide.

Edited by author 02-09-2004 11:02 PM
My experience as a teacher who is autistic is that in regular schools I was accepted as a competent person able to disseminate to my students [primary and secondary] the necessary information and skills on the syllabus and teach appropriate social behaviour that met mainstream society's expectations of an NT child who has been educated for life. Children enjoyed my classes and enjoyed the tight structure I needed to cope; they felt safe as did I.

When I entered the field of special education I suddenly found out that I did not have the necessary ability/attitude to be an acceptable professional: I did not wear my heart on my sleave. I did not care in the right way. I did not show requisite public empathy! I was "hard", tactless, blunt and actually expected the "poor handicapped" children or adults to learn and become more independent. As a consequence I was subject to frequent scurrilous attacks, some covert, some quite public and defamatory, yet I have cared enough to choose [for the last 25 years] to work only with clients who exhibited the most confronting and dangerous or difficult behaviour. The people who consistently criticised, attacked and slandered me came from those professions who pride themselves on their care for others: therapists, family counselors and social workers. It appears that in the politically acceptable culture of the "caring" there is one proper way to care. It is the caring of sentiment, but rarely [in my experience] of action. The culture of sentiment or emotionalism does not seem to include action. These so-called professionals were never to be seen working with clients who smeared faeces or self-mutilated or attacked staff. Yet they claimed they cared, but I a HFA adult of great experience am considered second rate because I cannot care in the correct way! I care by doing, not by sentiment!

Another paradox which is generally not considered is that most autistics are males and the intuitive trait of empathy is largely lacking in autistics. However the majority of people, whether carers or professionals who work in the autism industry, are women and generally highly empathetic. Few, if any NTs, seem to consider the clash of "cultures" that occurs when emotional, sympathetic caring women meet head-on from the beginning in early intervention programs, schools and other agencies with "systemising" [to quote Simon Baron-Cohen] autistics, mostly male. In essence it is a form of cultural imperialism in which autistics are compelled to surrender to the "forces" of the NT and adopt the patterns and conventions of behaviour of NT society. The reverse rarely occurs: try asking an NT to leave his/her emotions out of an interaction with an autistic and the standard defence/excuse for almost any bastardry is "I care!" It seems the most severe crime an autistic can do is to hurt or ignore the precious feelings of an NT, yet it is alright for NTs to impose their noxious personal emotions on and into autistics as though it is a special favour!

A few quick comments: The reason a blind man is president of blind society and not a parent is that a blind person can speak for themselves. Most autistics unlike you and me (i am mildly autistic) cannot speak for themselves, so that parents are delegated to advocate for their children.

The reason that blind people don't have to undergo ABA and other treatments is that autism is a topic that appeals to people with a certain type of personality, so you won't get ABA type charlatans who will purport to make blind people normal the way the ABA people claim they can make an autist completely normal. Special educators and ABA therapists are the lowest of the low and they are beyond ethical reproach.

In AGRE data, 77% of autistics have "functional spontaneous daily speech" before the age of five. This is similar to numbers in a large ongoing study in Wisconsin, and in epidemiology (Chakrabarti & Fombonne, 2001). There are many ways besides speech for autistics to communicate "for themselves", and indicate needs and preferences, and contribute to society and the discourse about autism.

Parents of blind children must also speak for their children, in the sense that all children are to some degree spoken for by their parents. However, parents of blind children do not reject adults who are blind, even should some of them be somewhat "less" blind than their child, from having the leadership of organizations representing all blind people.

Hi Jon,

I actually taught physical education at a school for the blind in 1976. What troubled me was the behaviour of many sighted people toward the notionally "poor helpless" blind children. So many so-called professionals actively trained dependance in blind children and seemed unable to allow the children the dignity to learn for themselves even at the risk of the occasional bruised knee or bump on the head. Blind children frequently become trapped in a double-bind: they want to be independent, but also know they needed some help from the sighted. The type of highly empathetic persons attracted to work with blind children also tend to be personally affronted when their well-intentioned help is rejected by independent blind children. Ultimately blind children become very angry [deep down] because they fear the loss of necessary support if they assert their independence, but want that support only as they determine they need it. They are perceived as ungrateful.

The same issue keeps cropping up again and again: the need by NTs to validate themselves emotionally at the expense of other people, especially those who are different, whether autistic, blind or whatever! That is why I like Jane Meyerding's analogy of autistics being solid core and NTs being hollow core and needing to validate [fill!] themselves emotionally by communion with other NTs. Unfortunately they do not respect our difference.

[Actually there is great similarity between the congenitally totally blind and autistics in the issue of the development of an understanding of the Self in relation to Not-Self, but that is another topic.]

Just because some idiot father decides to feel sorry for himself rather than take action on behalf of his child, and just because some idiot scientists imply that autistic children are like poltergeists doesn't mean that ALL parents and ALL scientists have it in for autistics.

Also, parents MUST speak on behalf of their autistic children because children in general are not seen as capable of speaking on anyone's behalf - not just their own. Most parents will gladly discuss a child's needs and desires with them and try to act on them.

Take a severely autistic child and he can't even begin to express to the world anything about himself.

Adult autistics seem to be offended by society's attention to autistic children. I often hear "I'm not sick - why is everyone trying to cure me?"

No one is trying to cure you - you already talk, write and speak. You call yourselves autistic or some doctor called you that. I see you as absolutely ordinary human beings - and I use the term "ordinary" because I mean you are able to have jobs, pay rent and all the other day to day stuff we all do in society. Maybe you are different on some level from everyone else, but in the things that matter- you are like the rest of society.

My question to adult autistics is this:
If you had a child that did almost nothing, said almost nothing, ate almost nothing - a child who did not evolve - would you not be inclined to try to find someone to help him?

When your child turns 5 and is still unresponsive - would you not worry?

When your child is 12 and all he does all day is pace back and forth, moving his hands in an endless repeating pattern, muttering to himself but saying nothing to anyone else would you not feel that perhaps his life was wasting away and you could do nothing to help him?

If you did nothing, wouldn't THAT be irresponsible?

Autism is never an excuse to allow a child to be neglected or abused or subjected to various medical and behaviour therapies - but it's difficult to imagine any parent doing nothing.

Another good question - what is autism?
It seems to a have a pretty loose definition depending on who is labelling and who is labelled.

In my neighbourhood I know of 3 autistic individuals - one who is 7, one who is 13 and another who is about 35. They all seem to enjoy a similar "Quality of life" in that they are solitary and completely unaware of the world outside them. The child spends his time pacing and flapping his hands, the 13 year old paces in front of his house muttering, the man walks all day, wandering and muttering profanities.

Do people who identify themselves as autistic think that these three people are living fulfilled lives? Do you not think that their families would be grateful for their sons to be able to make some other form of life for themselves?

This is autism as I see it.

And wanting to cure it is not to rid the world of autistics as the writer of this article suggested to me when I wrote her. Curing autism - as I see autism - is to help people achieve quality of life, self-determination, to simply be able to look after themselves as the rest of us "ordinary" people do.

A desire to cure autism neither means that parents should subject their autistic children to a multitude of medical, psychological, behavioural and psychiatric treatments in the hopes that SOMETHING might work. I see the autism industry as caring very little for helping anyone except the specialists selling their wares.

Why can't adults who identify themselves as autistics - people who have the ability to write, read and speak - work together with parents of severely autistic children instead of vilifying them?

You are the lucky ones. For some reason, eventhough you are labelled autistic you have the power of self-determination and at the core of it all, this is all any parent hopes for her child.

Shouldn't we all be working together? People labelled "autistic" can help parents of autistics a lot in the quest for understanding their children and in finding treatments that are respectful and more importantly useful. Parents, in turn, should help in the fight against discrimination against adult autistics because a cure doesn't necessarily mean that our children will be "normal" in society's eyes. They will likely fall under the same discrimination that adult autistics do now.

I'm sorry this is so long. When I contacted the author she was put off by my desire to cure autism and cut off discussion with me. I think there is a lot to discuss between parents and autistics and I feel I've finally had a chance to say my part and to be heard.

Thank you.

Edited by author 03-15-2004 09:11 PM
Ms Burrull proposes to eradicate autism. This is the title of her website: "What's Going On ??? Dedicated to the eradication of autism."

It was not possible to communicate with Ms Burrull. She has invented her own, quasi-DAN-based theory of autism, and is not open to reality-based arguments.

I found it appropriate to respond to her politely, something she did not reciprocate, which brings me to the point.

Those being vilified and excluded are autistics.

Accurately reporting publicly-documented actions taken by groups of people claiming to represent autistics is not vilifying those groups. They speak for themselves.

Ms Burrull expects autistics to flock to the aid of people like herself, who claim to know all about us, including what we think and what we're worth. We're supposed to help those who wish we didn't exist. We're supposed to help eradicate ourselves for our own good.

No thank you, Ms Burrull.

Michelle Dawson
naacanada

Edited by author 03-16-2004 01:03 AM
Hi Ana,

For a start the word "cure" is misleading and hearkens back to the days of the medical model when all sorts of people with developmental differences were placed in institutions with a medical/sickness focus, ostensibly to proetect them from the rest of the world, hence the term "asylums". No one can "cure" [meaning change] what is fundamentally a neurological difference between NTs and autistics. However you are right that it is wrong to leave autistic children pacing, flapping, muttering, etc. when they are capable of functioning more effectively as autistics, but never NTs.

Doing nothing is unacceptable, however consideration of the actual meaning of that behaviour from an autistic perspective must be given if intervention is to be effective and relevant to the autistic child. It is always possible to construct an operational model explaining the meaning of autistic behaviour from an autistic perspective that then allows management and intervention that is ethical, though there is not space here to detail it in full. So much of the apparently meaningless learned behaviour of autistic children including those with significant intellectual deficits is actually functional to those individuals. The fact that it is learned indicates the possibilities if an objective analysis is performed. Funnily enough I am the strictest behavioural specialist, but my very strict interventions are based on knowing the meaning of the behaviour I see from the autistic perspective.

Autistic behaviour is always logical, but it is very often elliptical or round-about in message/meaning when compared to NT behaviour. Alternately it meets an intrinsic sensory need, e.g. pacing, but the form [pacing] is learned [operantly] through random trial and error in the absence of direct instruction or access to other [NT] socially acceptable or normative ways to achieve necessary sensory input. Autistic behaviour in relation to the unpredictable emotionally driven behaviour of NTs does develop in strange patterns by reflection, yet those children demonstrating such strange patterns in relation to NTs still learn to operate machines which have absolute rules of "behaving". Who has the problem? Is it the autistic child being asked to process the variable, emotion-driven communication behaviour of NTs when, by definition, he is not neurologically wired to understand such information, or is it the NT who, like an arrogant Englishman travelling through France complaining about all the ignorant Frenchmen speaking in a foreign language, asks the autistic to speak NT when he cannot ever do so?

For instance a teenage girl repeatedly asking school staff in escalating volume and tones "When is the bus coming?" was not talking about the bus schedule, but saying "I'm anxious!" By association she learned to to use the question about the bus arrival as an anxiety statement. Being at school was safe as was being at home. However being on the bus in transit, she was neither at home or at school and therefore felt unsafe, out-of-structure and became anxious. Over time the question "When is the bus coming?" became a generalised statement meaning "I am anxious!" For a number of years school staff had been punishing her for asking "stupid" questions - she always knew and would say when it ws coming, but, in doing so, they only increased her anxiety. Similarly an older autistic lady flushes her underwear down the toilet when anxious. Residential staff, focusing on the act, not the meaning, wanted a behavioural program to teach her not to take off and flush her underwear. It took very little effort to ascertain she only did this when there was a change in routine due to her day progam ending and holidays beginning and/or when new staff started in her residence and did not follow her structured management program. In simple terms she learned, when very young, that when she removed her clothing when distressed by any change, she received caring attention [reinforcement] from her mother. She was made safe. Removing/flushing her underwear also became a generalised statement meaning "I am anxious." but was not understood by her [so-called] care staff, so she too was frequently punished for her supposed misbehaviour.

The fundamental issue is this: if you do not understand and respect the logical meaning of the behaviour presented by those [very low functioning] autistic children you describe, you can and will do great damage to them by approaching treatment from a purely NT perspective. It is not the behavioural model which is at issue, it is the misuse of the model by people who do not respect the innate and normal difference of being autistic.

We higher functioning autistics face the same core issues, but our higher intelligence grants us some insight into our autism so we can self-manage to a degree in known/learned settings and with known/learned people, but at the core autism is a constant. I and my brother were systematically trained to behave correctly by our parents from birth, however there are many highly intelligent autistics who are not functional or adaptive in general life in spite of their superior intellects as they did not receive the necessary structured early intervention to allow them to learn to organise their autistic Selves in childhood.

[By the way Ana, I still self-talk, I still pace [around my farm which looks "normal"], I still wiggle my fingers and tap my foot any time I am alone, I am still obsessive [about my work - which makes me look normal], I am still pedantic [which helped me be a good English teacher and look normal], I still have heightened pain tolerance [which helps me when my more violent clients bite, kick or hit me] and so on. I am autistic. I am not cured and never will, or want to be cured!

Ana wrote: "No one is trying to cure you - you already talk, write and speak. You call yourselves autistic or some doctor called you that. I see you as absolutely ordinary human beings - and I use the term "ordinary" because I mean you are able to have jobs, pay rent and all the other day to day stuff we all do in society. Maybe you are different on some level from everyone else, but in the things that matter- you are like the rest of society."

I respond:

I often wonder what makes people in your position appear to believe that you can clairvoyantly peer into the lives of all autistic people who ask you these questions, and come to these conclusions about them.

Take me, for instance.

I write. I don't speak. I don't have a job. The government pays my rent. I don't do most of the day-to-day stuff most people do in society, and in fact receive services from my local Regional Center (which only serves developmentally disabled people, not "absolutely ordinary" people) in order to get things done that most people consider so basic they never even have to think about them.

I have been considered unaware of my surroundings when I was quite aware of them, and this still happens to me in public places -- I have in fact been taken to institutions solely for appearing unaware and uncommunicative. A person who does not show the usual body language to indicate awareness is not necessarily unaware, I remember every minute and every thing that was said about me. For that matter I have been considered aware of my surroundings when I was unaware of them. It does not inspire my confidence in the judgement of outsiders when it comes to my mental state *or* my level of happiness with myself or my life.

My life has probably not been an ordinary one in almost any respect. I fail to see why this means I need to be cured. I also fail to see why teaching someone to be aware of their surroundings (if they aren't already) or teaching someone a method of communication, or making their life better, means they are cured. If you believe that the only two options are curing a person and doing nothing, then you are more of a black and white thinker than any autistic person I have ever met. It has been my observation that a person's happiness depends more on their surroundings, their past, and their temperament than on to what "degree" (if we have to speak of such things) they are affected by autism.

These ideas, your ideas of what autistic people are and are not, seem merely like an ad hominem argument guaranteed to dismiss the views of any autistic person who can communicate in a way that is impossible to dismiss in any other way than by saying "You aren't autistic, not *really*." It's a catch-22, because as soon as an autistic person says "Hey, you're wrong!" you can say "You're not autistic," but everyone who is incapable of saying that gets your assumptions plastered all over them. I can tell you that I would not have wanted your interpretations of autism placed on me at times when I had no reliable means of communication.

Is Lucy Blackman cured? Tito Mukhopadhyay? They can both write perfectly well, so why do you assume that those of us who ask you on the Internet are any different? We might be, but we might not be. I am certainly nothing remotely near to your stereotyped assumptions about autistics who can write.

What precisely do you think of autistic people who fit your pattern by the age of 5, 13, or 25 but who found ways of communicating? Do you seriously believe they spontaneously became non-autistic? If you do, can you then answer what to do for the ones who learned to talk, at 2, 5, 10, 20, or whenever, but are unable to accomplish most daily tasks, desperately need autism-related services, but can't receive them because of people who say that if you can talk or interact you're not autistic? Can you honestly tell them that they aren't autistic just because they can finally talk and happen to hold opinions that are unpopular with you? I hope not.

Edited by author 04-26-2004 05:13 AM
[Ana Burrull 11
 
03-15-2004 01:03 PM ET (US) ]

>Just because some idiot father decides to feel sorry for himself rather than take action on behalf of his child, and just because some idiot scientists imply that autistic children are like poltergeists doesn't mean that ALL parents and ALL scientists have it in for autistics.

*True.... but the vast majority have. I can count on the fingers of one hand, or maybe both if we're lucky, the number of professionals in the world who truly have any understanding of our situation. And I mean here the non-autistic professionals. (Actually, some non-autistic ones try, and honestly try; most don't though.)

>Also, parents MUST speak on behalf of their autistic children because children in general are not seen as capable of speaking on anyone's behalf - not just their own. Most parents will gladly discuss a child's needs and desires with them and try to act on them.

*That would be a problem of a societal nature then: we tend, as societies, to be rather nasty in how they ascribe abilities and skills to children... very disempowering.

>Take a severely autistic child and he can't even begin to express to the world anything about himself.

*I couldn't do that as a kid, either. Yes, I am a psychologist, yes I am autistic and, yes, I am the father of an autistic child. What we did with our child (my wife is also autistic) was to enrol her in a very small nursery, where she would be in a position to make her own social development without being over-faced by the number of relationships she would have to handle. Nowadays, she can handle more, but she tires easily still. And she made the gains herself, under the watchful eyes of some great nursery staff who consulted with my wife and I whenever there was a difficulty that needed clearing up. My daughter has learned to start saying when something bugs her or when she needs things, although she knows exactly how to get them for herself.

>Adult autistics seem to be offended by society's attention to autistic children. I often hear "I'm not sick - why is everyone trying to cure me?"

*You hear it so often because it happens so often.

>No one is trying to cure you - you already talk, write and speak.

*That is not a sign of being cured, you know???? It is a sign of having developed. Something we're supposedly not able to do without the dubious "help" of a radical behaviourist. For a shitload of money.

*And as Amanda earlier states, the life situation is not great: I am a psychologist but I will never be able to work for anyone given that there is a lot of prejudice about the label. I am qualified at a basic but recognisable level (BA, or equivalent - my "invisible BA Hons" with at least 50% in psychology; one year's worth of work experience, supervised by a chartered psychologist; Postgraduate Certificate in Special Education: Applied Educational Psychology, as an interim award, pending: the five points needed for right to be known as a psychologist come from this lot). And I am in further training too (due to qualify as an MEd psychologist this year). But the prejudices are far reaching. Apparently, unless we become "normal" we are seen as nothings, with no competences and no expertise. So the possible employers to whom I make applications fail to appreciate my abilities. I don't know where you get the idea that we're in such a good position from! The vast majority of us are not.

> You call yourselves autistic or some doctor called you that.

*And how many autistic people do you think you might have offended with that, very likely thoughtless, comment?

> I see you as absolutely ordinary human beings - and I use the term "ordinary" because I mean you are able to have jobs, pay rent and all the other day to day stuff we all do in society.

*Hang on! Most of us, even at the so-called "higher-functioning" end of the spectrum, have some serious support needs because of how societies manage to organise themselves and how they decide on their childrens/adolescents'/adults' priorities. I am currently on a stipend from a very generous educational trust endowed by a very generous government minister (a true socialist). My wife is only able to get "työkokeilu" (work placements), and I can't even get that: I can not give my expertise away! I am essentially a trained psychologist and I cannot get listened to on my specialism, despite being the most qualified person in the town I live in. If we were seen as "ordinary" - don't you think I'd have a seriously good job now, with a really good pay cheque? From what I have been able to calculate, I am worth - with my experience and training - about €200/hour for what I do; I definitely don't get that much. Probably never will: because my expertise and training and knowledge are not respected here in Finland.

> Maybe you are different on some level from everyone else, but in the things that matter- you are like the rest of society.

*Are we? If that were so, we all would have better mental health outcomes simply because society would have accepted us as we are without our having to do all the changing. But we have to do all the changing so, no, I don't think we are like the rest of society, because - well, read Michelle's paper on the standing of autistic people in Canadian society.

>My question to adult autistics is this:
>If you had a child that did almost nothing, said almost nothing, ate almost nothing - a child who did not evolve - would you not be inclined to try to find someone to help him?

*Help, yes; but as I have said somewhere else... there's help, and there's help. Being a psychologist myself, and being and applied educational psychologist, and - further - being a specialist in autism issues generally throughout the life span, I cannot help thinking that MUCH of what is touted as help (by the ABA lot) is not very helpful: I heard somewhere that, two years after the end of their assessment, many if not all of the original Lovaas group had - despite being "indistinguishable from their peers" - found themselves having mental health problems and, basically, crashing... becoming VERY distinguishable from their peers. Once a behavioural programme to eradicate the "autistic behaviours" has done its job, the expectation on the children to keep those gains becomes to great for them without a support structure around them. Behaviourism applied in that way is doomed to fail, and it is - from MY point of view (as a professional) - very unsound practice. Some learning principles are useful: as a maths teacher (who also taught physics and electronic engineering principles in remedical teaching: not many like me, it seemed), I used to help failing students by building up, bitwise, their skills in the actually processes of "doing the sums", solveing equations and so on, and I used task breakdown and discrete trial learning in order to get them out of the habits they'd learn from what (when I investigated it for myself) turned out to be sloppy teaching.

>When your child turns 5 and is still unresponsive - would you not worry?

*Yes I would, and my first thing here is that, if my child wasn't doing anything before then, I would be worried: why does it happen that a child ends up getting into that state? Who has done what to help and why? And are there some things that have been missed? Finding out is far more involved than most behaviourists will admit.

>When your child is 12 and all he does all day is pace back and forth, moving his hands in an endless repeating pattern, muttering to himself but saying nothing to anyone else would you not feel that perhaps his life was wasting away and you could do nothing to help him?

*I would wonder how in hell a child of any description could have been allowed to stay in such a state with nobody doing anything? And here I am questioning not so much the parents but my so-called fellow professionals - some of whom, quite frankly, are less than professional.

>If you did nothing, wouldn't THAT be irresponsible?

*Ah but, you see, I would not do nothing.

>Autism is never an excuse to allow a child to be neglected or abused or subjected to various medical and behaviour therapies - but it's difficult to imagine any parent doing nothing.

*That often happens because professionals given very bad advice and information at diagnosis and often fail to follow up. Sometimes it's just the system being crap. Sometimes it's the professional being crap. Very rarely is it the parents being crap.

>Another good question - what is autism?

*Y'wha'?

>It seems to a have a pretty loose definition depending on who is labelling and who is labelled.

*Really? You mean that ICD 10 or DSM IV have weird variations according to local dialect? You see, they are where you find a definition of autism; well... a sort of definition.

>In my neighbourhood I know of 3 autistic individuals - one who is 7, one who is 13 and another who is about 35. They all seem to enjoy a similar "Quality of life" in that they are solitary and completely unaware of the world outside them. The child spends his time pacing and flapping his hands, the 13 year old paces in front of his house muttering, the man walks all day, wandering and muttering profanities.

*These are sad and extreme cases, and I have to ask why nothing is being done to secure development.

>Do people who identify themselves as autistic think that these three people are living fulfilled lives? Do you not think that their families would be grateful for their sons to be able to make some other form of life for themselves?

*Firstly, this "who identify themselves as autistic" business: stop being offensive to us and we might just be nice to people like you! Secondly, I for one do not think that these people you mention are enjoying any quality of life if they would like to do more as living beings (and, if Kelly, Maslow, Vygotsky and just about any other reasonable psychologists are to be believed, they do); and for me the problem would seem to be that - if they have had any expectations made of them - they have been too much. Even for these poeple, ABA would usually not be advised. I personally would take the cues from Vygotsky, but most psychologists outside of the profession from with I make my "living" have already forgotten about Vygotsky... "because he was about development, not disorders and treatment". But sound developmental principles, applied properly to begin with, can save a hell of a lot in dealing with "disorders and treatment" psychology in later life.

>This is autism as I see it.

No. It's one facet of it that you see. And, in my line of work (having worked in special education, further education, university/college-level education, and privately), I have seen a lot of what is autism from most parts of the spectrum.

>And wanting to cure it is not to rid the world of autistics as the writer of this article suggested to me when I wrote her.

*Actually, by definition, it IS. By "curing", it would necessarily deplete the number of autistic people in the general population, which - if all prospective autistics were "cured" - would necessarily "rid the world of autistics". Genocide by treatment, I think.

> Curing autism - as I see autism - is to help people achieve quality of life, self-determination, to simply be able to look after themselves as the rest of us "ordinary" people do.

*No, it isn't. See my last point. Autistic people can - AS AUTISTICS - gain those things without having to sacrifice who they are. Otherwise, you might as well suggest that we should cure the blind/deaf/crippled/whatever-other-disabled-group-you-(don't)-like out of society too. Why are people who have a go at us autistics like this not in possession of the cognitive ability to see the errors in their own arguments? Or is it that prejudice is just not that easy to hide, after all?!

>A desire to cure autism neither means that parents should subject their autistic children to a multitude of medical, psychological, behavioural and psychiatric treatments in the hopes that SOMETHING might work.

*A desire to cure autism is the same as a desire to cure ... well, here we go.. cure Jewishness. Ask Hitler, he was (by his own government's rules) Jewish and he tried to cure it... eventually he found his cure: he blew his own brains out.

> I see the autism industry as caring very little for helping anyone except the specialists selling their wares.

*On THIS point, I think we can agree.

>Why can't adults who identify themselves as autistics - people who have the ability to write, read and speak - work together with parents of severely autistic children instead of vilifying them?

*Actually, many of us do work with parents. And they like it that we do, as well as what we do. But when we start to question the ethics of the CAN/DAN/FEAT/ASAT medication/behaviour-therapy lot in their way of nullifying autistics as non-persons (which, to be honest, is what they do) we get people coming at our throats trying to attack our characters... happened recently to Michelle. We don't set out to vilify: they do.

>You are the lucky ones.

Oh? Why? Because I don't feel lucky. Never have. See my point earlier.

> For some reason, even though you are labelled autistic you have the power of self-determination and at the core of it all, this is all any parent hopes for her child.

*And what did we have to go through to get this far? If the psychiatrist who dealt with MY case had had his way, I would have been institutionalised and ended up the same as the three cases you mentioned earlier. Er.... no thanks.

>Shouldn't we all be working together?

*Yes. But people have to be able to see not justas they see, but also as we see. If our viewpoint is not to be respected, why the hell should we be expected to co-operate? In other situations, you wouldn't do it. And nor can we.

> People labelled "autistic" can help parents of autistics a lot in the quest for understanding their children and in finding treatments that are respectful and more importantly useful.

*Yes, we can. if only the FEAT/ASAT/CAN/DAN/etc lot would get the hell out of our faces.

>Parents, in turn, should help in the fight against discrimination against adult autistics because a cure doesn't necessarily mean that our children will be "normal" in society's eyes.

*Actually by definition, yes it does.

> They will likely fall under the same discrimination that adult autistics do now.

*No. Because they would be "cured"...not autistic any more. Please learn some logic.

>I'm sorry this is so long. When I contacted the author she was put off by my desire to cure autism and cut off discussion with me.

*Hardly surprising. Any desire for a cure is essentially a desire to rid the world of people like us. You can't possibly value our help if you want to cure the people would would be the ones to grow up into who we are.

>I think there is a lot to discuss between parents and autistics and I feel I've finally had a chance to say my part and to be heard.

*There is much to say, but I can't see it progressing if autistic opinion is always going to be rubbished by, for example, the likes of Kit Weintraub (FEAT Wisconsin) who gave a good reason as to why behaviourism is a bad idea and why Wisconsin is not a place to bring up an autistic child. You should see what she wrote about Michelle. It was disgusting and vile. I would say that a woman who could write the prose that she did could not possibly be someone who could care for an autistic child: she wants the autism gone.

David N. Andrews
BA-status, AEPiT (U B'ham)
Psycho-educational Consultant and Applied Educational Psychologist
Kotka
Finland

Associate Editor (Finland) - Good Autism Practice journal
Chairperson - Autistic People Against Neuroleptic Abuse (APANA) political pressure group
Private/Independent Practitioner

http://dna1fi.tripod.com/intropage/

>Thank you.
Okay.

<<

> >Take a severely autistic child and he can't even begin to
> >express to the world anything about himself.

*I couldn't do that as a kid, either. Yes, I am a
*psychologist, yes I am autistic and, yes, I am the father
*of an autistic child.

>>

Not only that, but I have never seen an autistic person who is truly unable to express things. Maybe unable to deliberately express certain things, but lots of things autistic people do express things about them. And I have seen a lot of autistic people in a lot of contexts.

Amanda,

"Not only that, but I have never seen an autistic person who is truly unable to express things. Maybe unable to deliberately express certain things, but lots of things autistic people do express things about them. And I have seen a lot of autistic people in a lot of contexts."

Actually, Amanda, this is true. My emotional expression is through music, and I haven't really done music for a long time. Tell me how my emotions are doing.....

In the absence of the SAR thread, I post this here.

It was my response to James Mulick.
---------------------------------------------------------

Hmmm...
  
: This Taken Seriously By The Court In Canada Is An Outrage

: Dr Mulick, is currently a Professor in the Departments of Pediatrics
: and Psychology at The Ohio State University, Columbus. Professor Mulick
: has published over 100 articles, chapters and books in the areas of
: learning, developmental psychobiology, behavior analysis, mental retardation
: and developmental disabilities, policy analysis, and curriculum development
: for advanced and postdoctoral professional education.
:

He is also on one of the councils of the APA, and - as an APA member - has certain ethical standards to abide by. He has chosen not to.

: This is a reaction [email messaged from Dawson supporters
: characterized by hate and personal attacks] that true believers of any
: persuasion are likely to do. They are outraged by logic and free debate.

No, we are not. We love logic and debate, but where is the logic and debate in the rebuttals to Michelle Dawson's essay on the ethics of ABA? I have seen the rebuttals, and I have seen neither logic nor debate. And this piece by Mulick - from whom we should be able to expect far better than this - is no different.
 
: She presented
: herself to me as an autistic journalist (an oxymoron, if taken seriously,
: because autistic people would not, by definition, be interested in a career
: in communication!) and a self-appointed expert on the autistic perspective
: on life.

Firstly, there is a number of autistic people who have gone into areas such as: poetry and other creative writing; psychology; communication; and journalism.

Secondly, she is not a self-appointed expert: she has an affiliation with a specialist clinic in Montreal, at the invitation of the Professor who runs this clinic. This Professor recognises her expertise, even if “professor” Mulick doesn’t.

: People who have had difficulties making a living are not
: considered experts in economics. People who have psychiatric disorders are
: not considered experts in psychiatry. Why is this? This is because learned
: fields are not, we should hope, be based on idiosyncratic experiences and
: personal biases alone, but rather on a demonstration of acquired knowledge
: and on experience of effectively working in the learned discipline.

Indeed, personal experience alone is not the best way to gain expertise on something; one has to learn the ins and outs of the subject, the theories and the pros and cons of the theories; one has to learn about the vast number of research methodologies that exist and their strengths and weaknesses; and one has to learn how to write in a scholarly way. But these conditions do not preclude (and never have precluded) autistic people from being able to become experts in the field of autism. I think here of Dr Theresa Jollife (whom Simon Baron-Cohen supervised for her PhD: the first autistic PhD in autism research). I think of Jim Sinclair, whom I believe to have a master's degree in developmental psychology (but I am open to correction on this matter). I can even think of myself: I am a psychologist, and am an associate editor of an international journal on autism practice. We have had training. We have completed or are completing postgraduate professional or research degrees. We are experts because of our training AND because of our experiences of being autistic.

: She showed sensitivity to my point of view and was a very
: active listener. When she spoke, she offered clarifications if I had
: questions about her meaning. She told me she wanted to enter in to a
: Canadian legal case as an expert in autism, based on her own experience as
: an affected person and on her perspective as a journalist who had
: interviewed professionals who were considered experts in autism. Do you get
: the picture?

What picture might that be, "Professor"?

: She was behaving like a well trained journalist who had decided
: to become a part of the news she was gathering.

What??????? Obviously behaviourism as a way of understanding people is of no use whatsoever then.... missed the point by many many miles, "Professor"!

: These are arguably
: characteristics of a person with a psychiatric disorder, but that disorder
: is not autism or even on the spectrum .

Actually, since the "Professor" was not asked to opine on Ms Dawson's diagnosis, this was a comment he had neither the right nor the clinical knowledge to make. On this point, he has gone outwith his ethical code. And - from my point of view - is no longer a credible professional.

: In popular terms, she impressed me
: as a person who had managed to convince someone in her government that she
: had a disability, and who lived off that status, but the disability she did
: have had perhaps been mislabeled.

Again, since he was not asked to opine… why is he opining?

: Malingering comes to mind.

And this wasn’t a malicious thing to say? And the “professor” would not know this?

: Personality disorder comes to mind.

Mulick… you are NOT the clinician who diagnosed Michelle Dawson, and you were not asked to venture an opinion. Not that your opinion, since it seems to consist of hateful and nasty epithets, is of any value here.

: In fact, there appear to be a number of individuals
: who travel with the autism community as experts based on their status as
: people who had and overcame the disorder, even as they live off that status
: in the public eye; even as they behaved in ways that a person with autism
: would never choose to do (seek public speaking opportunities, seek
: recognition, constantly communicate, etc.).

I have to ask a question here. How many of these individuals has he actually met? Or been involved in diagnosing? Or involved in helping? And – the second clause of this part is based entirely on prejudice without reference to what is actually known about autistic people.

: Remember that autism is a
: disorder that is characterized by particular ways of behaving.

And so, “professor”, is antisocial personality disorder; and – since you were competent (according to your behaviour) to diagnose Michelle – I am diagnosing you. With AsPD.

: I was mentioned in the article Dawson posted as having said that
: autistic characteristics were a hilarious accident . This bit of gratuitous
: out-of-context quoting shows her intention was merely to denigrate the
: people she interviewed, not to create a helpful debate.

She did not actually denigrate anyone. You have, though.

: This is shown by the fact that she did quote out of context. I will
: tell you the context. She asked me about the cardinal symptoms of autism,
: and about the impact of the disorder on affected people. I tried to explain
: to her in everyday language that the disorder's defining characteristics
: were still in flux.

If they are in flux, how can you say what you said earlier???? Recap: “even as they live off that status in the public eye; even as they behaved in ways that a person with autism would never choose to do (seek public speaking opportunities, seek recognition, constantly communicate, etc.).”

: To illustrate this, I suggested that the people described in Kanner's
: original paper shared characteristics he described and that he noticed, but
: that the few individuals and their prominent commonalities represented not a
: complete picture, but were grouped together by Kanner's individual
: perception and the accidental cluster that he thought Made Them All The
: Same.

So…?

: I was not saying that it was a joke to have autism or trivializing
: autism, far from it, I was emphasizing that other aspects than those first
: emphasized have come and gone as diagnostic markers, defining
: characteristics.

What is NOT a joke, Professor Mulick, is to have people in positions of prominence (such as yourself) pulling autistic people down with malicious and spiteful epithets.

: I think as well that a system of psychiatric classification
: based mostly on behavior is a poor way to classify mental illness in general
: and the PDDs in particular.



: We will make progress understanding disorders of
: learning and development when we understand and classify based on causes
: (not on effects), but unfortunately such a system is not yet a reality and
: will not be a reality for several decades (at least that's what I think).

You will learn more about developmental differences more if you approach the topic with a more open and understanding mind, instead of one which hems itself in with prejudices not worthy of someone in your position.

And you are a behaviourist: YOU DO NOT THINK!

I got to meet Michelle.

She is autistic. I'm not a professional, just a fellow autistic.

She's also a really nice person who is obviously tremendously intelligent and has the obvious respect of her peers from the clinic she works at in Canada.

Oh, I could tell all this, even though I am autistic.

No, really.


oddizm

That was a fantastic post, Gerald. Right 'on the money'. Hope you'll consider posting it again (here or anywhere).

seems like mr bourgeois has withdrawn his post.

i don't know what he wrote that was right on the money... what did he say?

i had some nasty experiences because of him the other year and am still not happy with the result (me and my now-ex being the result).

i don't trust him.

Everyone who takes the time and effort to post a relevant comment anywhere on this site is welcome and valued.

Maybe, Michelle, but I know how he goes about this. I have had (nasty) dealings with him before, where he was blowing hot and cold with everything; Heta had been talking to him about this autism stuff and he went for it with me on another site swinging from being very understanding and sympathetic to being very aggressive and nasty.

You may welcome him... your prerogative.

But I don't have to.

That would be mine. I have prior experience of him.

And so do many others to whom he caused massive amounts of offence and or distress.

Fair warning has now been given.

I have been accused of many things myself, including being dangerous, and have been banished and censored, and discussed in my absence. Many people have been warned about me.

The welcome mat (/m23) remains firmly in place, for those wishing to contribute relevant comments.

Edited by author 09-10-2004 05:45 PM
>I have been accused of many things myself, including being dangerous, and have been banished and censored, and discussed in my absence. Many people have been warned about me.

*Yes. Difference is, you're not but he is. If he feels offended by what I say he shouldn't have done what he did. Simple.

*Your* personal assessment of someone else's character is important, I'm sure, in some contexts, but I see no *relevance* to this context, that is this comment board. I don't think the discussion of an absent third party's personal life or assumed characteristics or character is what people come here to read. Again, relevance and respect for others, however difficult in some situations, have not often been a problem on these comment boards, and I suggest as I sometimes do that they not become one. There are I'm sure forums for working out personal problems among individuals, and perhaps even for tearing down an absent third party's character, but this is not one.

Edited by author 09-11-2004 07:37 AM
>*Your* personal assessment of someone else's character is important, I'm sure, in some contexts, but I see no *relevance* to this context, that is this comment board.

*Actually, if I am to feel anything like comfortable reading and posting here, it may well have a lot of relevance in this context.

I'm not trying to assassinate someone's character. I made a point that someone I do not (for me, for good reason) trust had made a post here, and I know that in other situations this person has behaved in horrible ways towards many people. What people here do in regard to that person is up to them. I don't give a shit. If it were my board, I'd be in a position to ban him, as happened to him on another forum. It's not, and to be honest I don't advocate banning him.

But I don't have to like him, or trust him, based entirely onhis behaviour towards me and many others who encountered him elsewhere.

I have good reasons for how I react to him, and I'd like those respected. Just as I would be requested to respect other people's reasons for any interaction they wished to have with him. I'm not tearing his character down. I'm stating why I don't trust him.

Can we end this here, please, and get on with the autism stuff?

David wrote: "Can we end this here, please, and get on with the autism stuff?"

Since you are the one who brought in non-autism stuff, that would be up to you.

I made a comment about someone who has been known to be nasty to an autistic, namely to me.

After that someone else took it up.

Might be up to you too.

Let's put this to bed now.

What is happening on the "Bettelheim" front?

All I did was to reiterate that *all* people willing to make a *relevant* comment are welcome here. *That* is not taking up an argument, just a statement of policy, which I'm now repeating for the third time. Since I trust Ralph's judgment, I can safely assume that the comment which set this off was indeed "on the money", and *relevant*, and it is our loss that it was deleted.

And I think I said that I don't care who posts.... but I have a right to my opinion on who posts. In a nutshell.

It would have been interesting to see what mr bourgeois said. And how things developed.

I know what my experience of him is, and so does he.


Now... Bettelheim and his worst crime....

What is happening with this?

For anyone wondering about the preference of a dead child with measles versus a live child with autism, see the first letter here http://www.spiked-online.com/Articles/00000002D41B.htm . Here is the text:

-----------------------------------------------------------

Until further research is done, please may I let my children catch measles, mumps, and rubella, rather than risk developing autism. When my eldest child developed autism, maybe after the MMR jab, I felt that it would have been better if she had caught measles and died. The grief of living with a child with autism is worse than normal grief, because autism seems at times like a living death, with no hope offered, no cure, no sympathy offered to parents, and no understanding shown by GPs generally. If my child had been brain damaged after a measles infection, it would be easier to accept, than to think that I allowed a vaccination to damage my child.

Karen Angela Richardson, UK

-----------------------------------------------------------

This parent's overwhelming concern for her own well-being speaks for itself.

i have autism all these aricles really sisturb me cause I know just how worhtless and awfull i am. I've been
unpopular and learing diabules in math all my life. I
want to be killed. I wish one of those brainaiacs would kill me. I tired to catch aids with strangers so I would die and give everyone a break.
I do not however grieve my parents. They roll off my misery. They egg me, tell me to hurt myself more and I do and that I can't do anything I can't learn, I'll never immigrate. I know I sound like a moron. Reading this stuff makes me more disgusted with myself. I don't expect or want the world to change and fall in love with me.
I can't stand being the butt of a joke and be the only one
not moving up on my homework. I can't handle adult ed with 3 people in a room. I just feel AWFULL with constant migranes from noise. I can't get used to noise.
Sorry Had to vent. I do want to be killed. I do. I know no one would care. No one will get busted. It's so easy.
Be happy you can commit a crime. I'm just waiting.
I egg people to do it. One gut wanted to break my arms first and I chickened out.

I typed too fast and made some mistakes. I mispelled
learning disabled, disturb and forgot to put in my folks tell me I can't do stuff. I believe I can and get mad
when I notice I can't.

I feel stupid posting. Damn it!!!
Things just get harder and harder. Everyone expects me to just deal with things. I really am at the end of my rope.
I'm disgusted with getting nowhere whil taking steps to
improve my life. I also have tinnitus. The screeching in my ear is so high pitched, I pull out my hair from the
sheer annoyance. I can't hold a conversation cause
everything is masked with the wailing shriek in my head. I go days without sleep. This flared up years ago and it
never gets easier. There's no cure for this either.
Be happy you don't suffer like me. I once told my sick mom
to count her f------ blessings cause she's dancing on
peanuts compared to me.
This is my last post. I hope to die before the lovely
menepause kicks in. Autism dosen't mix with hormone changes.
I fear the future. I know I'm just gonna rot and get worse.
We're left to rot. Please be happy for your health and
abilties. I envy all of you to death.
Thanks.

I am child psychiatrist and psychotherapist (in Italy) with experience in working with people with autism and their families. I read only now your articol, quoted by wikipedia. I want congratulate with you and agree with most of your writings. Particularly where you put the question of parents, i.e. family enviroment, that became a taboo, forbidden to speak about, because of the movement against Bettelheim. Working with families and children with all kinds of behaviour ang development difficulties, we see that family disfunctioning (that is not a blame, a sin, because noone of us is perfect, not even as a parent) may product suffering and disorders in all members, and of course in growing children. When family can be helped to change some disfunctioning aspect of their organization and relationships, we often see things go better. I saw that often also with families with an autistic child. All parents may have problems towars a child (not all sons, maybe only one). Often the mothers are more entangled in that, often because fathers are absent or faraway: they may be entangled in labirinths with their son (do you remember Munchausen by proxy?). Family and relations with parents are most important for all people. Also for autistic children. Often we see disfunctions in theyr relationships and family organization. We have not to avoid to adress this topic, in order to help they going on, not in order to blame them.

Please post further comments on Bettelheim's Worst Crime to the following discussion board:
http://www.quicktopic.com/27/H/vJvhV4fDnBgw7