A “Crusade Against Autism”—-To What End?
October 30, 2008 by Kristina Chew, PhD
Filed under Health
Do we really need a “crusade against autism”? Autism Speaks co-founder Bob Wright, grandfather of an autistic child, spoke of just such a “crusade” in the inaugural Annual TreeHouse Lecture. Dr. Michael Fitzpatrick (who’s the parent of an autistic child) writes about how such a “crusade” does more harm than good in the October 29th Spiked. Here’s his conclusion:
Many families affected by autism welcome the higher public profile of autism, as reflected in the US election campaign. If this leads to greater resources to enable children with autism to get appropriate schooling and for affected families to get the support that they need, then that will be progress. If, however, resources are diverted into the pursuit of phantom environmental causes – such as vaccines – or the promotion of quack treatments or fad therapies, this is likely to have damaging consequences for all concerned. What we need is not a crusade but to move beyond discourses of blame based on irrational views about autism.
“To move beyond discourses of blame based on irrational views about autism”—-I can’t agree more. I’ll go a step further and suggest that we need to move beyond discourses of blame, period. Of parents and mothers in particular being blame for causing their children to become autistic due to being emotionally withdrawn, “refrigerator parents. Of endless efforts to pin this or that “environmental agent” as The Cause of Autism.” Of blaming vaccines or something in vaccines and then blaming doctors, scientists, and science itself.
I think—my husband Jim and I think—-that our son Charlie is autistic because he’s our son. We love him beyond what words can say and consider ourselves lucky to spend every day with him. I’m with Virginia Bovell, whose 15 year old son Danny is autistic and who says in an interview with the Daily Mail:
There are many things I find uncomfortable about the notion of ‘curing’ autism.
To cure my amazing son Danny would be to suggest that there is something dreadfully wrong with him, perhaps even something we, as parents, couldn’t live with – but nothing could be further from the truth.
If someone took away Danny’s autism, it would also take away so much of who he is. And I am certain that many parents of autistic children would agree, because how can I ever tire of watching my son’s face light up with joy as he kicks leaves in the park on his way to school?
To me, the notion of “curing autism” misses the point about what autism is (a lifelong disability). It’s not a helpful notion in my daily efforts to help my son: If one keeps thinking that there’s some “magic pill” for autism out there, and that one just has to find that elixir to make it all right, one’s determination and devotion are unquestionable. And because of that determination and devotion—-because, if you will, of love—it’s natural to want that magic pill. But autism and Charlie, and Charlie and autism: These are intertwined entities. Again quoting Bovell:
My son doesn’t have a ‘disease’. He is unique, special and happy. So why do I need to cure him?
Like “vaccines,” “cure” is one of those topics that come up in relation to autism, but that shift the focus too much away from helping autistic children and adults here, today, and now. Crusading against autism has a grandiloquent sound, but what I’m in search of is so much mundane reality. A job, a place to call home, other needs—of food, clothing, drink—all met at least adequately and, preferably, very well—these are real things that real individuals will need. Rather than mourning that a child did not get started in Early Intervention “early enough” (a point that Wright raises regarding his grandson in his TreeHouse Lecture), what about starting wherever a child is at and building an individualized education and individualized services—building a good life—around them?
It can be a huge and absorbing task to figure out how to do this. While it can seem scary to think about the future, for myself, the fear is more manageable when I look into things and deal with what’s in front of me—-this would be many more days of us walking the long road with Charlie, every step of the way.
Yes to what end.
I hardley ever use the word autism anymore. My son C is just C and to my mind there is nothing to cure. Help him yes, but cure him of being himself – no.
Well said.
Do you realise that the more people who blog here about the Wrights and the treehouse lecture, the more people here about there relatively low profile visit (inspite of the news items they did get placed)
Yes we are carrying the enemy’s news for them
Kristina, as always, I applaud your eloquence. Well said, indeed.
I do think research in to being able to identify autism early is valid and profitable. I think a better understanding of the root causes of autism may have the effect of helping the majority of parents make better choices for their children, including vaccinating them – that is my hope at least.
@laurentius-rex: I don’t know that I see the pro-vaccine contingent as “the enemy”. I disagree with them obviously on many levels. But the only way to really to “combat” their message is for those of us who feel differently to stand up and demand to be given equal exposure, to let the world know that not everyone believes their child was damaged, that autism is not to be feared, that there are far worst things that my child and family could face.
Do people really think that Bob Wright would choose to crusade against autism on a lark, as the #1 choice for his retirement years? Clearly his passion is derived from a motivation to help his impaired grandson.
I know that he and his wife Suzanne have given significant time and donations to the renovation and renewal of the Westport Country Playhouse, supporting the late Paul Newman and Joanne Woodward. What a perfect world we would enjoy, if our only plight would be to improve landmark theaters!
Instead, the Wrights have been dealt a powerful blow with the pain of autism….and yes, autism does bring pain to many families.
Try explaining to any parents whose children spread their feces on the walls, or tantrum in screeching pain, that they should not want to crusade against autism.
I will not qualify what motivates me or any family that wants to fight for a cure. Awareness is the conduit for research; that’s where contributions are conceived.
Okay, what benefit has autism bestowed on my daughter. What harm would a cure bring to her.
I don’t see a cure as causing a great change in her, but greatly expanding her opportunities and the ability to stake her place in the world.
I still think “cure” is an inaccurate word to use—–I’ll focus, as always, on educating, teaching, and what our kids can learn. I’m not sure that thinking of autism as “curable” is helpful, or, at least, it hasn’t been for us in thinking of ways to help Charlie, but that’s us.
Making much of not so much—-perhaps that’s a hazard of blogs!
I agree Kristina…the “making much of not so much” is often a hazard of semantics and blogs present a broad reading base, so arguments ensue.
Perhaps dreaming for a “cure” is a fantasy that parents indulge. One of the definitions for cure is “successful remedial treatment”. Doesn’t that fall into the description for educating or teaching?
Regards,
Robin
@Robin H. Morris: “cure” isn’t how you would describe education or teaching of a *nonautistic* person, is it?
@Kristina: “Crusade” is a particularly repugnant term, for those who share my cultural history. The First Crusade in 1096 CE unleashed terrible violence against the Jews of Europe.
These emotionally disturbed parents saying they don’t want their disabled autistic children cured, by saying they don’t want to imply there’s anything wrong with their children, and that they don’t want to change them, seem to me to be suppressing other feelings. They don’t want to acknowledge there’s anything wrong with their children as they don’t want to admit anything is wrong with themselves, due to perceptions of how children reflect on their parents. I don’t think they want to deal with the awful feelings that come with knowing their child is mentally disabled.
I listen to the way those parents talk and it’s just not reasonable, considerate, or emotionally stable. And it seems quite selfish sometimes. Not wanting to cure the mental disability of autism is not a respectable or acceptable idea, and I think it is very oppressive. Talking about curing such disability as if curing meant changing their child’s identity or personality is not sensible at all, and I detest how that notion trivializes the terrible nature of mental disability.
Also, hypothetically, a choice by parents to reject a cure if it were available, should not be made available to them, because I think it’s the child’s right to a decent life that is more important, not the parents’ pointless ideas. But if a cure were really out there, I doubt there would be such anti-cure attitudes from a handful of parents, as there are now while a cure is out of reach. The misguided stuff parents say in disliking cure, shouldn’t be trusted to be what is in the best interests of their children, who will grow up and want to have dignity and self-sufficiency.
Thank God for lurkers, who manage to fit all their wrongheadedness into a couple of paragraphs. Alternatively, I’ve been in enough pain this week to relish taking someone apart if only with an electronic pen.
This lurker wrote:
“These emotionally disturbed parents saying they don’t want their disabled autistic children cured, by saying they don’t want to imply there’s anything wrong with their children, and that they don’t want to change them, seem to me to be suppressing other feelings. They don’t want to acknowledge there’s anything wrong with their children as they don’t want to admit anything is wrong with themselves, due to perceptions of how children reflect on their parents.”
Don’t you just love the diagnostic tone – emotionally disturbed, does not want to admit, suppresses feelings and so on. Lord it’s nauseating and it gets better, or worse. All this diagnosing from a far and loftier vantage point is in support of the non existent, the quintessential stuff of fairy tales come to save me from having to deal with a harsh reality. Just a little reverse diagnosis there:)
“I listen to the way those parents talk and it’s just not reasonable, considerate, or emotionally stable. And it seems quite selfish sometimes. Not wanting to cure the mental disability of autism is not a respectable or acceptable idea, ”
According to this the reasonable and acceptable is to act as if magic were real and this is somehow less ’selfish’. The woman’s deranged. We don’t have a cure for autism.. Many respectable thinkers have been empasisng that point and for good reason. Cures are for selling things to gullible parents. Perhaps this is an altie shill with a multi thousand dollar ‘cure’ lurking up her sleeve. At least, that’s consistent with the moniker.
Worse, much worse, the lady’s attitude towards autistics becomes clear -no cure equals no self-sufficiency and no dignity. So now the purveyor of magical thinking makes broad generalisations without one shred of supporting evidence. Not, mind you that one should expect much from such as this.
Yes, it is a bit of an odd arguement.
Saying that your child is autistic, that they have a right to be autistic, and that people with autism are not intrinsically defective – is somehow, in some unmentioned undefined way, denying that they are autistic and is somehow denying them the dignity of being allowed to be who they are without devaluing them as defective.
It’s amazing how people who claim that there is actually ‘a normal child underneath all that autism’ are seen as being in less denial than those that recognise that their child doesn’t just ‘have autism’ but is ‘an autistic person’.
It’s amazing that tolerating and accomodating your childs individuality and trying to give them a decent standard of daily living that respects thier status as a person with autism, rather than trying to change them into a ‘normal’ child, is seen as the selfish option.
Most amazing, however, is the complete lack of recognition for the idea that therapy can be helpful for people with autism*, but it doesn’t mean that any and all ‘autistic’ behaviour requires therapy.
This person-centred approach of looking past the label at the person seems to sail over the heads of people like lurker.
Yes, lurker, mental disability is a terrible thing. Please stop devaluing us and those who can’t function enough to be here to have their say – it just adds to the disability.
*as an aside, I’m a newcomer to the whole autism community, yet I’ve physically met many pro-neurodiverse people with autism who also provide or argue for therapy and services for people with autism. Yet such people – easily a tangible presence in the autism community – fail to get any recognition for the anti-neurodiverse at all.
It makes me wonder whether many of the pro-cure people are capable of seeing anything in less than polar opposites.
Phil Schwarz,
I am responding to your comments:
@Robin H. Morris: “cure” isn’t how you would
describe education or teaching of a *nonautistic* person, is it?
@Kristina: “Crusade” is a particularly repugnant term, for those who share my cultural history. The First Crusade in 1096 CE unleashed terrible violence against the Jews of Europe.
You are right. Perhaps the words cure or curative do not apply to typical education, but it works for me in a way. Remedial intervention incites progress which for me is curative. I do not subscribe to cure or recovery the way Jenny McCarthy does (roughly re-stated) “it’s like being hit by a bus, you always have boo boos”
The word crusade doe work for me. Would a crusade against breast cancer be poorly worded? Nevertheless, when it is used as a crusade against Jews it is definitely repugnant.
It is about semantics.
“Yes, lurker, mental disability is a terrible thing. Please stop devaluing us and those who can’t function enough to be here to have their say – it just adds to the disability.” Then stop sticking up for the people who are trying to keep mental disability in place or who have lost the will to support looking for a cure for it.
I’m not devaluing you. Think about all of the phony devaluing anti-cure rhetoric. Some of those who talk about autistics barely talk about them as if they were persons with wants like anyone else, but as characters that are just supposed to bring happiness to others around them. Corny and sugarcoated phrases aren’t person centered. Why don’t you stop antagonizing those who push for a way out of disability instead of supporting those trying to keep it in place.
I’m not supporting anyone who wants to keep mental disability in place, such a thing would be very odd for someone who works in an autism service*. Neurodiversity is about creating a supportive environment so that the ‘impairments’ are better understood and accomodated.
If you had bothered to read properly before assuming things about my view, I’ve already mentioned that I’ve met several pro-neurodiverse diagnosed autistic adults who have designed or deliver autism therapies. Just because they help people with autism to cope with being autistic , without trying to stop them from being autistic , doesn’t mean they’re happy for autism to be viewed as nothing more than ‘mental disability’ as doom-mongers like you do.
It’s rather odd that you’d side against a approach that recognises all needs and wants, regardless of whether they derive from autism of not, but you’d happily side with an arguement that delegitimises autistic needs and wants regardless of the personal meaning to the individual involved.
You need a severe reality-check if you think dismissing autistics as nothing but wall-to-wall mentally disabled is actually helping. There’s real people here, not just a label. Dismissing our lived experiences as inherentally inferior and constantly negative is as bad as the people you slate.
Neurodiversity is supportive of a wide range of person centred interventions, not least of which involves social skils training, sensory therapies, and life skills. It is also supportive of wide ranging attitudinal changes and societal accomodations.
It’s not equivilant to doing nothing and that’s something you will just have to put up with. Questioning the view of autism, and trying to find the positives in your childs life, is not the same as denying that any problems exist, and I doubt you will ever be able to show that it is so.
*although I’ve seen it happen – and always from people who view autism as an illness to be ‘cured’. Until you’ve witnessed it, you’ve no idea how much anxiety and stress a person can cause with ‘the best of intentions’.
Neurodiversity propaganda rarely advocates reversing impairments. They don’t like such weakness to be complained about. I think that is too clear because they believe in the “social model” of disability. How are they not downplaying the problem of impairment when they blame society for the disability? What treatments have neurodiversity autistics designed? Existing treatments don’t go far enough and don’t help enough of those on the spectrum.
“It’s rather odd that you’d side against a approach that recognises all needs and wants” Your side doesn’t recognize even half of the needs or wants. ND doesn’t acknowledge that people hate being impaired, and want to be as competent as others, and they rarely talk about those on the spectrum who are severely impaired. I’ve seen too many brilliant non- disabled autistics talking mostly about their own circumstances, and I am tired of them being out of touch with the low functioning.
“You need a severe reality-check if you think dismissing autistics as nothing but wall-to-wall mentally disabled” Of course it isn’t like that because the amount of impairment varies so much from one autistic to another. Such as the genius aspies who don’t seem to want to share their ability. If all on the spectrum could have what they have, there wouldn’t be anything to complain about.
@lurker, regarding what you note about “existing treatments don’t go far enough”—–what are you defining as “far enough”?
Impairment and disability are not the same thing under the social model, thus it’s entirely possible to blame society for the disability (lack of accomodation of the impairment, or rigid demand for shared habituation) without denying that the impairment (reduction in one or more skills) can affect everyday living. Pointing out that you can only fail to meet a demand for a certain skill and style when that demand is made, and that the informal ‘penalties’ are determined partly by culture and consensus, is not the same as denying the existance of that skill.
I’m sorry that you cannot understand this distinction.
You are correct that treatments don’t go far enough. They don’t go far enough in recognising the learning styles of people with autism, instead promoting presentation over imparting of understanding.
ND certainly acknowledges feelings of impairment – it’s recognised as a major cause of depression and low self-esteem in people with autism. Countering this cultural idea of autistic=defective is also a primary motivator for autistic-pride. I’m not sure why you’ve not picked up on all this.
I’m struggling to think of a single need or want that is not covered under ND philosophy. Work? Covered. Relationships? Done. Transport? Yup. Medical care? Same. Socialising? The only organisation I know of that cover that properly are all ND. Legislation? Gee whizz, looks like it’s ND again.
I’m also tired of people talking from only their own experience, but I’m able to consider the context as well as the content of peoples statements. Of course some people are going to talk only from their own experience – it’s a well known artifact of autism! Recognising that some people seem to be out of touch with low functioning autistics because of thier own autism may be helpful for you here. You’re dangerously close to denying their impairments whilst moaning about their denial of impairments in others.
The skills required for advocacy (or rather the skills required to present well enough to be taken seriously as an advocate) is going to ensure that most of the advocates you come across will be towards the ‘HFA’ end. Complaining about the ‘top heavy’ nature of autism advocacy without wanting to tackle the social systems (of autistic=defective) that overlook the ‘LFA’ end and make it so, seems to be a rather odd posistion.
“Crusade” also has deep religious overtones, of course—and the deep “faith” and “belief” of proponents of theories that vaccines or something in vaccines causes autism seems to be a theme on and off pointed out. In some ways, “crusade” seems more closely allied with more martial words and outlooks than might be first apparent.
In writing out my son, I’ve struggled to figure out how best to write about “impairments” or “deficits,” while being honest about (in particular) my son’s very real struggles, while also being positive and hopeful and indicating his strengths. It’s a work in progress to figure out how best to do this, for me.
For a treatment to go far enough, it should significantly decrease the magnitude of an impairment or eliminate it. Also if a treatment only works well for some individuals, then another treatment should be sought that has the same level of effectiveness for others.
Dedj, accommodations can’t remedy most impairments. It just can’t make up for a lot of tasks. “I’m struggling to think of a single need or want that is not covered under ND philosophy. Work? Covered. Relationships? Done. Transport? Yup. Medical care? Same. Socialising? The only organisation I know of that cover that properly are all ND. Legislation? Gee whizz, looks like it’s ND again.”
ND doesn’t really cover a lot. I don’t consider work covered enough when for many autistics, it will mean sheltered workshops and simple jobs that will have to be set up for them instead of them getting a job on their own. What kind of relationships do ND cover? I don’t think transport is covered in every way, because many won’t be able to drive. I don’t know what helpful legislation ND supports.
I don’t think that help in those areas should just be about guaranteeing subsistence, but also about bringing independence and equality, because people don’t want to lack any of those things.
“Recognising that some people seem to be out of touch with low functioning autistics because of thier own autism may be helpful for you here. You’re dangerously close to denying their impairments whilst moaning about their denial of impairments in others.”
I don’t know if it’s only because of their autism that they’re out of touch. I’ve kinda thought it was because fortunate people tend to not be in touch with or considerate of the unfortunate. Sometimes I can’t tell how many impairments those HFA ND proponents have. It has seemed to me that many of them don’t really have any significant impairments, especially when many of them evidently have all basic abilities, and they don’t usually mention impairments they may have. I’ve only heard about a few of their impairments.
Oh. My God. Talk about impaired.
I really like the use of the word “wrong” here. “What is WRONG” with, oh, you know, THOSE people. So WRONG.
“Simple jobs”? Patronize much?
Life, liberty, the pursuit of happiness. That’s it. We all have our own perceptions and definitions of what this means to us. And it’s no one’s business to define the parameters of those rights for any given individual. If an autistic person find and feels life, liberty, and happiness from their “simple job,” in spite of their “wrongness,” then that’s a life fulfilled. No one, thank God, must box their sense of personal fulfillment into someone else’s idiotic, constrained, socially derived ideas of it.
Go here to read about some of the public policy positions put out by the Autistic Self-Advocacy Network.
Handicapism, aka Disablism
Originally coined by,
Bogdan, R., & Biklen, D. (1977). Handicapism. Social Policy, 7(5), 14-19
From abstract:“Defines handicapism “as a set of assumptions and practices that promote the differential and unequal treatment of people because of apparent or assumed physical, mental, or behavioral differences…”
‘Disablism’: A Closer Look
Ragged Edge Online
Mary Johnson, May 1, 2006
“…When it comes to disabled people, though, liberals’ views are similar to those who have traditionally opposed rights: They believe disabled people face essentially private, medical problems rather than problems of discrimination. What a disabled person needs, they feel, is medical intervention — a cure. Lacking that, they should be given help, through private charity or government benefits programs….
The conventional wisdom offers up the scapegoat of the medical model — that is, a disabled person “suffers” because of the disability — the disease or condition. Disabled people do indeed “suffer” — but the vast majority of it is caused by discriminatory policies and outright denials of access…”
Let’s get this clear, Neurodiversity is not something which has 39 articles of faith, it is not something you pledge allegiance to whilst saluting a flag, it is not something governed by the Academie Francaise or a examining board.
It is not one organisation, or cabal of individuals, it is a broad movement and the term itself does not signify a belief in anything rather than an alternative explanation of phenomena without invoking medicalisation of everything.
One does not have to be autistic to subscribe to the notion of neurodiversity, or disabled even, it is not an ism, it is not a political party, it is just a school of opinion.
Those who think otherwise tend to be conspiracy therists who want to see a small group of individuals, mostly bloggers as ringleaders in some sort of freemasonry of anti curism, when nothing could be further from the truth, for actually this autism hub and the people here are a very small part of something much bigger and more diverse in its shadings, I certainly would not wish to align with some of the people whose blogs I read, even though way back nearly a decade ago I was using the term neurodiversity to describe a way of being.
“I don’t consider work covered enough when for many autistics, it will mean sheltered workshops and simple jobs……”
This is where we differ. Whereas we both consider independant living the ideal (it is, after all, my profession and my job) I’m still able to recognise the value ’simple jobs’ can have to the individual.
By the way, it might be helpful to spend some time looking at the systems of work in an office, or factory. Good places set up thier work systems to be as streamlined for the worker as possible.
“What kind of relationships do ND cover?”
Er, all of them, by the nature of ND. Projects such as Social Eyes are a good example of ND thinking being applied to a social skills setting, although I’m sure some people believe otherwise.
“I don’t think transport is covered in every way, because many won’t be able to drive.”
Which just shows how much of the arguement you’re missing by focusing on typicality as the ideal. Let’s help those that can’t, and will never be able to drive. Help by looking at transport systems and where we can improve them to make them more autistic friendly.
“I don’t know what helpful legislation ND supports.”
It’s hard to say what legislation is being supported in the US, but here in the UK we have ND proponents looking into NHS services (including provision for people who are entirely non-verbal), Disability Discrimination (now called Equal Rights Act), the regulation of care homes/with nursing through CSCI, and all the way down to people working with thier local services.
Still, Larry is correct. ND is not a collection of individuals, but a shade of ideas and interpretations. It has the power to recognise that people with autism are (drumroll please)…….. autistic, and that there’s not necessarily anything wrong with that just because society says so.
I get the feeling that you need concrete statements from people who clearly identify as ND, before you are able to identify ND thinking. This may be why you seem to be missing out on the scope of ND.
You can be pro-medical model all you want, but please stop confusing your disagreement with ND thinking as evidence that there isn’t any.
From Mr Rex:
“Let’s get this clear, Neurodiversity is not something which has 39 articles of faith, it is not something you pledge allegiance to whilst saluting a flag, it is not something governed by the Academie Francaise or a examining board.”
Well said, compared to the antics of this soi disant sophisticate:
“ND doesn’t acknowledge that people hate being impaired, and want to be as competent as others, and they rarely talk about those on the spectrum who are severely impaired. I’ve seen too many brilliant non- disabled autistics talking mostly about their own circumstances, and I am tired of them being out of touch with the low functioning.”
Naturally there are no examples of this cited and why would there be, I’ve never seen this anywhere but in what passes for the mind among lurkers and their acolytes.
Honestly, the lurker represents precisely that species incapable of grappling with any broad concept of neurodiversity and claims to know all about it – hubris magnified.
I don’t think it’s fair to say that people don’t talk from their own experiences, but the cases that I have seen are always appropriate to context. That is, the person has been asked about thier own experiences, or the conversation occurs in a space that is personal to them.
Just because a person doesn’t explicitly mention people with ‘LFA’, doesn’t mean that what they say doesn’t also apply, or that they’re not aware of peope with ‘LFA’.
The nature of advocacy will mean that most autism advocates will be ‘HFA’. We need to help more people with ‘LFA’ to get their opinions across, rather than standing about pissing and moaning when people stand up and challenge the stereotypes that exist about people with autism.
“Which just shows how much of the arguement you’re missing by focusing on typicality as the ideal” It isn’t about typicality. I want it to be about independence and self-sufficiency that people naturally want, rather than just dependence on the charitable actions and attitudes of others in order to get by.
I’ve seen that when people are able to do a task, especially a basic one, other people really want to have that ability themselves. But with all the avoidance of dealing with those concepts, I mostly see the overall problems pointlessly talked about in terms of typicality, normality, variety, etc.
“ND is not a collection of individuals, but a shade of ideas and interpretations.” If ND can’t be defined and expressed explicitly, then I think that makes it more inadvisable to condone it. How can someone approve of an ideology that would be implemented by people who won’t clearly state what they believe in, what they intend to do, and how they expect to achieve helpful results, and when intentions among the proponents vary so much and it is not known who among them would be more involved in making changes if the ideology were accepted?
“It has the power to recognise that people with autism are (drumroll please)…….. autistic, and that there’s not necessarily anything wrong with that just because society says so.” This isn’t all about what society thinks of autism. But what about the resistance of non-impaired HFA ND people to sharing their abilities with the autistics who have less abilities?
alyric, I’m tired of those of you pretending ND promoters don’t imply the things they imply in their words. It doesn’t matter if you all don’t explicitly say the things you mean. You can’t expect listeners of the propaganda to be naive and not see the patterns in the innuendos and discern what the real intentions of ND are. You can’t fool everybody. It’s not that difficult to see what ND promoters are like if you just look at their blogs.
My how the lurker has fallen:
“alyric, I’m tired of those of you pretending ND promoters don’t imply the things they imply in their words. It doesn’t matter if you all don’t explicitly say the things you mean. You can’t expect listeners of the propaganda to be naive and not see the patterns in the innuendos and discern what the real intentions of ND are. You can’t fool everybody. It’s not that difficult to see what ND promoters are like if you just look at their blogs.”
Look. there is no ideology, except in your mind, there is no propaganda except what you’re concocting. There is just nothing all that tangible about an attitude. Sorry to bust you balloon, but if you want conspiracy theories, just keep inventing ‘em. We’ve seen this idiocy before. In some insane moments of sympathy, we’ve even tried to explain the epistemological mess that’s practically guaranteed when one tries for rigid definitions of the ‘big idea’. Heck, it’s the only point of agreement I’ve had with Larry in ages and that’s saying something.
alyric, then what is there? What are all of you doing when you say the things you say? What are the tenets of what you push for? What would the practical effects of your control actually be? How can any of it be taken seriously if you won’t even accept that people think about the things that are being said by you?
Why should someone with such arrogance and rejection of accountability be granted any say over what policies should be chosen to affect people?
I see nothing in lurkers last post that actually deals with anything I’ve said. But let’s see what we can salvage.
It appears lurker can’t deal with the concept of ND existing as an attitude. Lurker wants clear, concise, concrete statements that are explicitly ND. It’s pretty clear that lurker cannot and will not comprehend that it is not a seperate movement, but an attitude that can be adopted by organisations and people that are already making the clear statements that s/he asks for.
Non-impaired ‘HFA’ people don’t exist. A non-impaired person cannot gain an official diagnosis of HFA except by accident (misdiagnosed) or by fraud (theirs or the clinicians). Talking about ‘non-impaired’ HFA’s is niave, silly and foolish, and ignorant of the problems “HFA’s” face.
“I want it to be about independence and self-sufficiency that people naturally want”
Which it is, it’s just that ND goes further and questions whether or not those are useful ideas, or even attainable, and wheter or not they should be.
Just because people don’t want to do things your way, doesn’t mean they don’t want to do anything at all. Things aren’t as black and white as you see them. Impairments can be tough to live with but that doesn’t mean we accept the idea that impaired living is inherently of no value.
Again, I’ll have to repeat, if you think devaluing people with autism for having autism is helping, then you need a reality check, and soon.
Alyric – this reminds me of a similar poster over at Kev Lietch’s place. That poster was challenged to provide a single reference to thier accusations. They failed to do so despite several opportunities.
Llurker, where does my sinister power lie? am I perhaps a worm or a virus who has infiltrated the upper echelons of the autism establishment in this country? Yes I am part of the establishment for all my humble and impaired origins.
Does that scare you? it ought to.
Seriously do you think I would be part of that autism establishment if I were pursuing a monoglot agenda, I got where I am because of what I have been involved in way beyond this little world of autism, in the wider world of disability.
Before the Internet was I am. Get that clear, I have history, Neurodiversity is just an offshoot of that, and nothing that I have seen in the curebie arguments have I not seen before with respect to other conditions.
I look at the bigger picture, because I can see further, you know how Newton put it, by standing on giants shoulders.
Being on the board of the NAS I have responsibilities that go beyond any narrow definitions of the autistic spectrum or any HFA self interest. I had to earn that position the hard way against all manner of prejudice, by demonstrating my commitment. You have no idea of what I stand up for and defend and how I constantly remind people in the movement that people like myself are only one part of it, and that resources need to be developed to include so called lower funtioning people in consultation.
You know what the NAS gets this, but being on the outside, just a critic, it is easy for you to snipe, to set up straw men, you just do not know at all what contribution we are making to research, to education, to care and welfare, the real pragmatics not just the thery.
Oh good grief, I’ve just seen lurkers recent post.
Lurker – what are the tenets of ‘Fast-food culture’?
What are the tenets of Generation-X?
What are the tenets of ‘The Cult of Celebrity’?
Who decided to implement the changes of feminism?
None of these have any tenets, at least none set by deliberate consensus, yet few people would disagree that they exist as definable social phenomenon.
Can you comprehend this? Can you comprehend that something can exist as a tangible conceptual description of a general shared attitude, one not governed by a set body of people or bound to mission statements, and also exist as a social entity that people can identify with?
Your impairments may be ‘responsible’ for your failure to see this, but at least do yourself a favour and admit to yourself that you have them. Then you can work around them.
Well, ND doesn’t seem to be a nice attitude. The impairments of the ND HFAs are nowhere near as severe and debilitating as the ones that the LFA are burdened with. I think about that because of the tremendous gap in abilities, including basic skills, between the LFA and many of the HFA/aspies.
““I want it to be about independence and self-sufficiency that people naturally want”
Which it is, it’s just that ND goes further and questions whether or not those are useful ideas, or even attainable, and wheter or not they should be.” I’m glad you admit that ND does this. I think that questioning those ideas the way ND does is oppressive. I think the conclusions that ND proponents have come to from such questioning are just plain terrible because of them being supportive of a status quo of inequality of mental aptitude.
“Impairments can be tough to live with but that doesn’t mean we accept the idea that impaired living is inherently of no value.” I’m glad that you also admit that about impairments. So why not cure impairments to make living equally enjoyable for everyone?
“Again, I’ll have to repeat, if you think devaluing people with autism for having autism is helping, then you need a reality check, and soon.” What is considered devaluing of those with autism? How is it not devaluing to describe autistics in flowery and corny expressions, as them being “gifts” and “joys” to those around them for others to treasure, and as existing as abstract instances of “diversity” and “uniqueness”, with no regard for the basic will and wants of those being described?
I’m tired of all of this framing the argument as a conflict between autism and neurotypicals. I want it to be seen as a problem and a struggle within autism about gaining sufficient ability, which currently is held only by a fortunate few with autism.
laurentius, I am scared because you are part of that establishment and I fear the other people in that establishment also.
Again, I see nothing that indicates you are dealing with anything that is being written in response to you. It’s like you’re reading from a script that you’re not letting anyone else see.
You talk about impairments and ‘inequaility of mental aptitude’ as if ND proponents somehow don’t, when it’s a major motivator and major focus.
It’s as if the concept of dealing with impairments from both sides , by also trying to change the impairing system is utterly beyond you to understand.
You have your set beliefs about ND and it looks like you’re darn well going to stick to them.
Oh yes, I’m also a member of the same organisation as Larry.
Surprisingly, despite it’s ND leanings, it helps to provide education and treatment for people with autism, including people who are entirely non-verbal. Much of this is focused around alleviating impairments, and providing autistic friendly spaces, with an eye on independance.
A classic example of how one can be ND and do all the things you claim ND’s outrightly deny.
Dedj, nobody would try to influence any kind of public policy or choices claiming Gen-X as their cause. I don’t get the comparison. Social phenomenona like that can be made up of many individuals with diverse circumstances and views who still are part of some trend, but nobody in such phenomenona tries to influence choices that affect society by talking to a large audience about it. Even in the few cases someone would try to have influence that way without tenets as a basis, I think they would actually talk about what they advocate, and how it would work, which may set them apart from some others in the phenomenon.
I guess I can comprehend it. But ND doesn’t seem to be just a phenomenon or something that will stay only as that. With all of this organization I see from them, especially in their efforts to influence the decisions of the public and policy making officials, actions that are another part of what they do, I can’t see them as just an attitude or phenomenon. Attitudes themselves don’t cause change in such ways.
And I’ve seen enough consensus among the ND to see them as more than an attitude. Most of the differences I see them arguing over are basically ones of tactics. It seems to me a lot of them rely on sophistry to promote their contentions.
“It’s as if the concept of dealing with impairments from both sides , by also trying to change the impairing system is utterly beyond you to understand.” I don’t think what ND considers the impairing system makes any sense, and they haven’t elaborated on it sufficiently.
I think about an impairing system also. I think that system is the current way of appropriating ability, where ability is determined by inheritance through genes and the various components of the environment, both of which are out of the control of the individual. Another determinant I think that is involved is sometimes the methods of early learning that are chosen to bring ability.
I think such a system is becoming outdated and will become obsolete eventually because of the kind of awareness and knowledge there is and will be, about how ability works and how to change it, so it may become possible for the factors that determine ability to be controlled by people, and for the things that cause ability to be shared by people.
I don’t think the concessions to the LFA that ND seems to want to stick to are enough to make things overall better.
“I don’t think what ND considers the impairing system makes any sense, and they haven’t elaborated on it sufficiently. ”
Yet it’s well studied by sociologists, psychologists, occupational scientists, anthropologists etc. You’re falling into your old trap of only accepting things that are exclusively and clearly labelled ND as having relevance to ND. A brief read of basic sociology would be advisable here.
The next bit is quite odd. You basically agree with the interpretation of ability that is currently prominent amongst ND proponents, yet you seem to miss out completely the socio-cultural environment, which also makes demands for specific abilities and sets values to them.
The next bit is odd in the extreme. You basically agree with ND proponents that we actually can change the ability system – something you’ve indicated that you believe ND proponents do not want to do and cannot achieve, but you seem to miss out on the idea that the desire for, and value given to, certain abilities is partially determined by the norms and values of the time.
This is getting bizarre. It’s like having a discussion with someone who believes that bees can’t fly but only because he has no concept of wings.
ND doesn’t have a realistic approach to tackling problems. When they say education should be provided, they don’t mention it with any regard to the intellectual impairments of many of those on the spectrum, which would preclude the effectiveness of such education. I can’t trust that they will help because of their attempts to undermine the motivation to end impairments.
I think the values of abilities are determined by how complicated they are, and how necessary they are in producing necessities and things that are wanted. I wonder what you want to happen to the socio-cultural environment.
That’s just nonsense. Many many people with “intellectual impairments” receive quite effective education. Do you live somewhere near the Earth’s core?
“ND” is simply a philosophy, a perspective, an outlook. It doesn’t “have” approaches. It just is. It is acceptance and an arguing for acceptance. No bylaws or platform or party planks or “approaches” broadly disseminated for the blind followers. Some people are wise enough to know what can or cannot (or should not) be changed and are wise enough to be accepting and embracing. Some people aren’t. Some people like to use labels and terms like “impairments” because they can’t see beyond the walls of the box society built for them.
The values of abilities are not determined by their level of complexity in all contexts, not by any means. The socio-cultural environment is not wildly different from the natural environment in that respect, and nature does not choose based on a hierarchy of complexity but based on what is the best fit for the given environment. Why would a “socio-cultural” environment be any different? The niches one can occupy “socioculturally” are almost infinite.
As for “how necessary” an ability is…there’s nothing terribly complex about jumping off of the garbage truck and emptying the trash can, but it’s unquestionably as necessary as the detritivores in an ecosystem.
Emily, when someone has a low IQ, there’s only so much education that can be attained. How is capability to learn not a concern? Education can’t happen a lot if the neurological means for the learning isn’t there. There is no way of denying this.
Whatever ND is, questions deserve to be asked of its intentions, because some of their adherents are trying to influence policy that will affect those on the spectrum. Who really wants your “acceptance”? What makes you think people don’t detest being dependent on others due to lack of basic skills?
Think of how ridiculous it is to think that people don’t care about having competence and independence, and would be content with being impaired. Reality doesn’t support such thinking. What if people just want to be as competent as other people, regardless of whether they’re “accepted” or not? I’m so sick of this phony avoidance of acknowledging impairments in favor of attempting to prop up self-esteem while there isn’t anything to feel great about.
I don’t think those like you are always going to be considered wise for your thoughts that certain things can’t and shouldn’t be changed.
lurker
40 years ago, my parents generation, people (some of whom I know) who are the age my parents would be if they were alive formed the NAS.
They formed it because the authorities at the time said that there children were ineducable, and proved that was wrong, catalysing the provision of services for autistics everywhere.
You seem to be going back to the old position that autistics are write off’s.
Yes I believe in an education that is informed by neuroscience but your position seems to be the most abusive of “low funtioning” individuals there is, you have allowed yourself to be led astray by all the bad science, and then you dare to accuse “ND” of caring not for “LFA” !!!!!
As for the dependency argument, how independent are you, you depend on a vast industrial and commercial structure to survive.
Can you spin and weave your own clothes, grow your own food, and mend your own broken bones?
laurentius, then why are there still so many autistics who can’t read or write? How can they be taught how? The interdependence of the division of labor doesn’t make independence unimportant. People are responsible for making and running industry. Independence under those conditions is achieved by contributing necessities and wants for others, in an amount of the same value or greater than that of the necessities received by others. Having to depend on others for costs of necessities and basic tasks, because of not being able to do enough, isn’t the same.
Lurker you obviously have little knowlege of education, you are confusing the outcomes of education with the processes of education.
Sure everyone has a limit to what they can learn as you are amply demonstrating, nobody says the autist with the PhD is the norm,
However there certainly are skills that can be and are taught, for heaven sakes all too many neurotypical kids leave school illiterate, and they do not have reading disabilities or retardation, they have been educated badly in an environment that mitigates against there aquiring those skills.
This is the irony, you are accusing something you typify as neurodiversity as abandoning autistic children to a state of nature, but what on earth are you saying here, are you saying it is not worth educating autistic kids, that they should be automatically institutionalised, or worse
Where is your concern for this group of people, You contradict yourself by your own arguments, better surely that people like me do care about the welfare of all autistics regardless of intellectual funtion, and that I lobby alongside parents for better services so that no autistic kid is left behind.
I am situated at the University of Birmingham in the school of education, with qualifications specialising in the education of autistics.
My colleagues are and have been involved in pragmatic research into interventions.
It is everyones right to an appropriate education so that they achieve the maximum that is within there potential. The attitude that sees autistics as train wrecks is one of the most harmful to progress that I can see. There are no magic medical cures, we have to work with what we have, this is the same accross the entire field of intellectual disability which is as complex a field of study as autism.
laurentius, don’t blame me because I address problems that you don’t want discussed. I’m not contradicting myself. I want education available and guaranteed to be possible for all. If you aren’t coming up with a way for them to learn, then you aren’t helping. What is your research producing to help autistics be able to learn? I also think ways should be devised to increase the potentials of individuals.
I’m confused as to what lurker’s point actually is. The points supposedly not discussed are exactly the points raised by ND approaches such as SPELL.
ND is a philiosophy, autism as neurological condition or a behavioural condition would be a framework, TEACCH or SPELL would be approaches.
“When they say education should be provided..”
Er, how about we have a big WTF? Autism education focuses on exactly those ‘impairments’ and how we can get round them.
Lurker appears to be saying that ND is somehow wrong because s/he doesn’t know enough about it. ND is somehow wrong because it doesn’t provide enough detail, when the detail being asked for is highly dependant on the selected approach, the service setting, the skill being worked on, and the broader social context.
This is all coming across as if lurker views things in black and white. It’s as if lurker believes not doing things to perfection is like not doing things at all.
Lurker – who exactly are your examples of ND?
Dedj, I hope autism education is successful in getting around those impairments for all receiving the education. I wanted to point out that someone should be taking care of that. I basically have my impression of ND from their blogs and the websites they have. I’ve looked at what a lot of those individuals have said. And they haven’t been addressing the issues as much as you have. ND should at least be clear on what their overall goals are.
Excuse me lurker, the school of Ed at Birmingham, is one of those few University departments who are actually training professionals to work with autistic people. The NAS is an organisation that provides education, accreditation, social care and advocacy.
The outcome of my research is intended to provide more effective ways of using video in teaching autistic adults a variety of skills and self awareness. My aim is to become a teacher of those future professionals, imparting the fruits of mine and others research.
Perhaps the most important thing that any of us can do is to pass on our skills to another generation.
“Emily, when someone has a low IQ, there’s only so much education that can be attained. How is capability to learn not a concern?”
This comment alone says enough about the ignorance underlying it. There’s no point in arguing these things if someone doesn’t have a basic grasp of the fundamentals.