Autism Myths

26 Apr

Hopefully I’ve shown over the last few posts in the advocacy section that there is a lot of misinformation generated by those who wish to debunk the idea that autistics can self-advocate.

Recently a new site has sprung up that seeks once and for all to debunk the idea of self advocacy for autistics – indeed, they claim that the advocacy movement are frauds. Here’s their opening statement:

In stark contrast to the widely recognized medical opinion that autism is a debilitating neurological disease, a small, (yet noisy!) group of individuals in Canada and elsewhere has become very vocal and active in the autism public policy debates and struggles. They have become forceful advocates for the bizarre fringe notion that autism is a misunderstood “culture” rather than what science knows it to be – a very serious disease of the brain.

They back this up with a quote from their arch-nemesis, Michelle Dawson talking about autistics:

We are not a plague. We are people who have a culture: a large published literature, art, music, architecture, design, technology, science, and engineering.

Anyone seen it yet?

Michelle Dawson quite categorically says that ‘We are people who have a culture’ whereas what this site claims is that the autism advocacy movement says is that autism is a culture as oppose to a medical condition.

This very basic error lies at the heart of the misinformation peddled at this site. All through it, they make claims which are pretty much all based on their premise that the advocacy movement claim autism IS a culture. Lets be clear – they do not. None of the big websites reflecting the advocacy movement claim anything of the sort. That doesn’t stop this site though – they have misinformation to peddle and the go to it with glee:

The “autism is a culture” fringe has repeatedly sent messages to those who support autism treatment suggesting that autism treatment is symptomatic of intolerance and cruelty. Nothing could be further from the truth, yet their messages have become increasingly accusatory and offensive. Many have complained of being harassed by frequent intimidating messages from this group. They have even made public personal attacks against individual parents accusing them of being “liars.” While some consider this fringe group as truly being from another planet, others have requested that a website be created to help people unfamiliar with autism issues put them in their proper context and perspective.

Although we live in a free society where everyone, including frauds, have the right to express themselves, every opinion expressed in public, especially if presented as a fact, should be subjected to critical analysis. The misguided and misleading arguments of the “autism is a culture” fringe are most deserving of such analysis.

See what I mean – they’re wilfully building a very large strawman. Its easy to prove something when your opponent has never claimed otherwise – the argument this website puts forward is like a creationist saying that because monkey’s don’t give birth to humans evolution is false. But hey, don’t take my word for it – here’s three of the biggest advocay websites on the planet (the Yahoo one requires registration). Have a good nose around. If you can come up with a sizeable concerted group on these sites claiming that autism is a culture then I’ll concede the argument immediately.

Before I go on, you may want to have a look at this website I’m referring to. Go have a good read and bear in mind what I’ve said about who’s claiming what about culture.

Back already? OK. In the quote above, the authoress of this site says that:

messages have become increasingly accusatory and offensive. Many have complained of being harassed by frequent intimidating messages from this group. They have even made public personal attacks against individual parents accusing them of being “liars.”

Firstly, this is an easy thing to claim and should be very easy to back up – so where are all these harassed, intimidated people? They certainly don’t seem to be present on that website. Of course the bit that made me laugh out loud was the bit that said people had been accused of being liars. This on a site peddling a basic lie – that autism is being advocated as a culture. Maybe if you don’t want to be accused of being a liar you should um….stop lying?

Moving on through the site, I note the ‘Professional Opinion’ section. I click it and lo and behold – its a section about Lenny Schafer! My joy is practically unconfined!

The authoritative Schafer Autism Report is a regular internet periodical that has a circulation of approximately 20,000.

Mr Schafer must be in heaven – at last someone thinks he’s an authority! He’s not. He’s one man with an opinion. His high circulation isn’t solely made up of his supporters (I’m signed up for example) and thus his claim of authority (and authority on what exactly?) is suspect to say the least.

Actually, its not really about Schafer its more about ABA. And again, its full of assumptions and misdirection.

Firstly, not all in the advocacy movement oppose ABA. A lot oppose the Lovass style of ABA and with good reason but a lot of people in the advocacy movement are receptive to the idea of ABA in its more progressive and less abusive modern form. No mention of that seems to be made on this site and nor was it made in the articles Schafer solicited to back up his view. Again, if you disbelieve me, go browse the sites I list above. You’ll find contributions from ABA practitioners in several places.

Secondly, the attacks listed in this page are all centred on Michelle Dawson. Thats fine, she’s eminently capable of fighting her corner but Schafer (and this site) made the schoolboy error of associating everything Michelle says as being ‘the law’ for the advocacy movement. Let me assure you that she herself doesn’t feel this way. Lots of people in the advocacy movement disagree with Michelle on lots of points. Attacking her is in no way equal to attacking autism advocacy and its pretty silly to think it is.

And now we come to the very epicentre of bullshit – the centre of this site: Myths & Facts about Autism.

When I first read this page I must admit I started to snigger somewhat childishly. Its at this point that i realised how very desperate the pro-cure autism crowd had become. Its basically one giant strawman. A lot of the stuff on this page has never been claimed by the advocacy movement as a whole. Lets go through them.

They say:

MYTH: Autism is a Culture: Autism is a culture, unlike cancer which is a disease.

FACT: Autism is a Disease, not a Culture: Despite the arguments of people who have adopted autism as their affliction, autism is the most serious childhood neurological condition a child can be diagnosed with. There is clear consensus on this point.

I say: The advocacy movement has never claimed that autism is a culture. Never. Your facts aren’t wrong, they were simply never disputed. Why are you arguing with yourself?

They say:

MYTH: Autistics are Victims of Intolerance: Past intolerance toward homosexuals, blacks and women from the political and academic community indicate that our society is doing the same thing to people with autism, not accepting their ethnicity, gender or sexual orientation.

FACT: People with Autism are Victims of Ignorance and Political Correctness: The existence of political intolerance of other groups in history is irrelevant to the plight of autistic children who are denied treatment by people who do not understand the consequences of not providing treatment. Chemically lobotomizing people with autism by giving them drugs to control symptoms or strapping them to wheel-chairs so they can live in the community is unethical, yet is the misguided, politically correct alternative to ABA treatment.

Autistics and the advocacy movement have never denied that autistics need help. In fact in several papers at the authors make a clear point of requesting it. Some people may be against some forms of treatment but ascribing a unified set of beliefs to a whole subset of people is inaccurate – wilfully so. If you have MD’s who’ve suggested your only alternative is ‘chemical lobotomisation’ or ‘strapping them to wheelchairs’ then I strongly suggest a second opinion. As it is, I don’t believe for a moment you included those alternates for any other reason than to provoke emotional reactions. Again, its simply untrue to suggest these are the only alternatives to ABA. And don’t forget that the advocacy movement is not against ABA, they are against some implementations of ABA having either witnessed or received abuse thought its use.

They say:

MYTH: Parents Can’t Accept Their Children’s Autism: This is all about parents making their children conform to neurotypical people because these parents can’t come to terms with the fact that their children are different.

FACT: Parents Love their Children, Not Their Disorder: It is as absurd a notion for a parent to love the child’s autism as it is for a parent to love the child’s cancer. Autism is not part of the child, it is the disorder with which the child is afflicted.

Simply wrong. Autism is part of the child. My daughter is autistic, she doesn’t have autism. However, thats my opinion. Neither of us can be proven right. But consider this – your childs autism permeates everything that they see, hear, touch, think, dream, experience etc. It can’t be removed (which is what makes comparisons to cancer so facile) and it can’t be completely negated. Knowing all that, how can you realistically think that the way your child functions is anything other than autistic? And if so, how can you hate that? Lets not forget that homosexuality was once classed as a medical condition requiring treatment.

(The next few are about ABA specifically and I think (hope!) readers are getting why these points are unnecessary for me to cover again).

They say:

MYTH: Autistic People Need Understanding, not Treatment: Autistic people without treatment would do fine if we were just more understanding. The majority of people with autism would end up living fine lives independently if we would only understand them and change the world to accommodate them.

FACT: People with Autism Need Treatment: Those closest to their children with autism, and the medical community, understand that treatment is the only hope for children to live independently. The concept that “understanding” will cure all is cruel since understanding will not help a person suffering with autism learn to communicate, stop self-injury (among other deficits and excesses characteristic to autism). In addition, there are many self-stimulatory behaviors, such as self-mutilation and masturbation, which will not be accepted in public and will cause people with autism to end up in incarcerated, or as life-long wards of the state, in large or small institutions. Changing community standards to accommodate these sometimes dangerous behaviours is a pipe dream.

I say: The autism advocacy movement has never said that autistics don’t require treatment. Go have a look on and you will find articles detailing the sort of help autistics themselves say they need. Its really very easy to check these things – why do you continue to argue cases that no-one in the autism advocacy movement is? What the autism advocacy movement is opposed to is the idea of a cure. Treatments are both necessary and vital. No one claims otherwise.

They say:

MYTH: Autistic people are uniquely qualified to study and understand autism: Only people with autism can understand what it’s like to have autism; therefore, they are uniquely qualified to study autism and decide how all people with autism should be treated.

FACT: Academic Researchers are Qualified to Study Autism: Researchers study disease. A person need not have cancer in order to study cancer and develop a treatment or cure. Having a disease does not qualify one to be researcher or expert for that disease. It qualifies one to be studied by researchers.

I say: That assertion is entirely illogical. Firstly, autistics are the only people who can understand what its like to have autism. Thats simple common sense. Logically then this means they are indeed uniquely qualified to study autism. The advocacy movement has no strong unified position on whether they should decide on treatments. If they do, I’ve never heard it expressed. Thirdly, lots of autistics are also academics. The two thing aren’t mutually exclusive.

They say:

MYTH: People With Autism Are Eloquent Self-Advocates: The eloquent spokespeople who claim autism is a culture are not, in fact, autistic with evidence from an independent medical examination.

FACT: Autism is Characterized by Serious Communication Deficits: One of the characteristics of autism is a marked difficulty to communicate. These self-proclaimed autistics would not be diagnosed with autism by any independent medical examiner based solely on their eloquence and critical thinking capabilities.

I say: Again, simply untrue. Its very easy to claim these things as facts but not so easy to back them up and is entire supposition on your part. One of the characteristics of autism is indeed a marked difficulty in communication. But not an impossibility. A sudden ability to communicate is not indicative of a miracle cure or other sudden lack of autism. if it was every child who uses PECS would lose their diagnosis immediately. Once again, its lazy, facile thinking thats not backed up by anyone with any pretension at a medical background as far as I can see.

In fact, there have been numerous instances of world leading researchers such as Simon Baron-Cohen (Professor of Developmental Psychopathology and Director of the Autism Research Centre at Cambridge University. Fellow of Trinity College, Cambridge), Tony Attwood (Honours degree in Psychology from the University of Hull, Masters degree in Clinical Psychology from the University of Surrey, and Ph.D. from the University of London) etc communicating messages of support to the autism advocacy movement. Surely if they believed that communication entirely cancelled out autism their messages of support would be messages of denouncement?

They say:

MYTH: Adults with Autism Need to Protect Autistic Children: Adult self-proclaimed autistics have the right to make decisions for autistic children rather than their parents (their legal guardians).

FACT: Parents are Their Children’s Rightful Guardians: In western constitutional democracies, the judicial system gives parents the legal guardianship of their children, disabled or typically developing. The belief is that parents are most motivated to look out for their off springs’ best interests and have the legal right to provide care and medical treatments.

More Strawmen (what a shame I’m not planning a remake of The Wizard of Oz). Whilst its true to say that adult autistics do feel a responsibility to the younger members of their community, the advocacy movement that I know does not think that parents should be removed from the decision making process in any way. They seek to educate, not confiscate.

Overall, I’m left with an overwhelming feeling that the pro-cure camp are getting increasingly desperate. Just about every statement on that site is incorrect either factually or by omission. Its in fact so bad that I started to wonder if it was indeed misinformation as I originally thought – maybe it was just simple ignorance? I’m still undecided but I hope that if you’ve found this site (I doubt I’ll get a link back somehow!) that your eyes are open to the dangers of such wilful misleading of people in such a shabby, grubby and underhand way.

3 Responses to “Autism Myths”

  1. Helen April 28, 2005 at 18:16 #

    I agree with you. People are fiddling words.

    Autism isn’t technically a disease. It is a condition. In my mind a disease is something you get, a condition you are genetically predispostioned to get IF you are not born with it. A disease is also treatable. Autism cannot be “treated” as such and any “treatments” are not exactly treatments but mostly therapy. It is the same with a stroke, you give people physio, occupational and speech therapy and people learn – they have to relearn, you cannot recover from a stroke without relearning the basic things, it is the same with autism, you are teaching the people how to communicate and intergrate with there peers.

    Also people with autism do need understanding, as well as the interventions. It isa two way process, the medical and education professions need to work on getting in the intervation as soon after dx as possible, also, the world needs to change to make it autistic friendly. Because until they work on improving the interventions available, and making them work more effectively, as well as working out with what group they will work best on, they shall still remain patchy at best and we all know that the younger a person is the better the interventions will be. Therefore the world need to get used to seeing autistic children and realising that autism in any form is not something you will grow out off.

    Sorry for rambling on – a lot of this isn’t relevant but I am getting pissed off with Curbies getting everywhere.

  2. Noetic April 29, 2005 at 14:18 #

    “In my mind a disease is something you get” (Helen)

    A disease is defined as the pathological process of a disorder on the body or brain, hence in almost all cases, something that is called “disease” is either infectious (acquired) or if it is inherited or neurologically based, it tends to be progressive (for example Parkinson’s Disease).

    Therefore any claims that autism is a disease cannot come from anyone who knows very much about medicine. Not that it stopes them from writing about it mind you!

  3. Estee November 29, 2005 at 14:21 #

    You are wrong. Autistic people do not want to be seen as they have a disease. It is those who peddle therapies that seem to be the problem. These are the people who don’t have autism and are speaking as if they know everything about it. Every “disabled” person has a deep inner life just like the rest of us. We see this by how they speak, perceive, feel about themselves and how they feel about people who regard them as diseased and deviant. We are creating a culture that does not tolerate difference. We have become a culture that is so busy that it does not seek to listen and learn to others. We have become a culture, for its intolerance and impatience, at fault for autism, largely because we don’t set up the supports to enable identity and self-esteem. Most psychologists and ABA purporters seek to strip away human dignity by fighting autism’s symptoms instead of patiently learning about its core. The simple fact that this has become a fight to change people with autism to become more like us, states loudly that people like you think people with autism are deviant.

    It is the autistic people that we must listen to, and their are many who talk, write and produce art and music. It is our responsibility as parents, teachers, scientists and the like to step aside and make way for autistic people to speak for themselves.

    I’m tired of hearing from people like you. I’d rather listen to the real experts — those with autism.

    I am a mother of a son with autism.

    Estee Klar-Wolfond

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