Despite the increasing body of knowledge revealing the neurological bases of autism, despite the fact that people who call themselves autistic either have, or are adopting by self-diagnosis, a medical diagnosis which defines autism as a disorder, despite the severe self inflicted injuries which threaten the health and lives of some autistic persons, despite the lives lived dependent on others in various dependent residential care facilities and institutions there are those, particularly on the internet who claim that autism is not a disorder and should not be cured.
There are some in the autism anti-cure movement who acknowledge that it is a disorder, particularly when they are seeking disability accommodation from employers or the provision of government services, but who still say that autism should not be cured. Implicit in this perspective is an anti-parent theme which emerges fully when parents describe candidly and honestly the realities faced by their autistic children particularly the more severely autistic children. Speculating about whether historical figures such as Einstein or Van Gogh were autistic is fine with the anti-cure movement. Touting any autistic savant, or accomplished autistic persons like Temple Grandin is politically correct but woe to the parent who dares speak honestly on behalf of their autistic child.
An interesting example of The Autism Anti-Cure Anti-Parent Perspective which I will refer to by the acronym TAAAPP can be found at Autism is NOT a disorder that NEEDS to be CURED a blogsite operated by someone called Cathy who does not disclose her interest in autism other than her obvious admiration for Michelle Dawson. Cathy only began blogging this month and has only blogged once - "comments re Facing Autism in New Brunswick". This comment contains two of the themes which identify the TAAAPP, anti-autism cure and anti-parent and I reproduce it here in its entirety:
There are some in the autism anti-cure movement who acknowledge that it is a disorder, particularly when they are seeking disability accommodation from employers or the provision of government services, but who still say that autism should not be cured. Implicit in this perspective is an anti-parent theme which emerges fully when parents describe candidly and honestly the realities faced by their autistic children particularly the more severely autistic children. Speculating about whether historical figures such as Einstein or Van Gogh were autistic is fine with the anti-cure movement. Touting any autistic savant, or accomplished autistic persons like Temple Grandin is politically correct but woe to the parent who dares speak honestly on behalf of their autistic child.
An interesting example of The Autism Anti-Cure Anti-Parent Perspective which I will refer to by the acronym TAAAPP can be found at Autism is NOT a disorder that NEEDS to be CURED a blogsite operated by someone called Cathy who does not disclose her interest in autism other than her obvious admiration for Michelle Dawson. Cathy only began blogging this month and has only blogged once - "comments re Facing Autism in New Brunswick". This comment contains two of the themes which identify the TAAAPP, anti-autism cure and anti-parent and I reproduce it here in its entirety:
comments re Facing Autism in New Brunswick
I have read this article in which Michelle Dawson(autistic) is mentionned and Erin Anderssen (mother of autistic individual).
I guess my main frustration is that individuals such as Erin are looking to somehow modify their childs behaviour. We live in a society that unfortunately is not tolerant of individuals.
I believe that Autism is not a disease to be cured. When is society going to change their way of thinking and allow for all differences, not just acceptable ones.
As far as specialized clinic's and residential care, shame on you parents that give up and take the easy road out.
Erin maybe if you spent more time with your son, rather than trying to denounce Michelle Dawsons "Scathing remarks" as you so put it, you might be surprised at the outcome.
Apart from Cathy's anti-cure belief she also expressly articulates, in the highlighted comments the anti-parent hostility that underlies much of the TAAAPP and Neurodiversity ideology. She expressly denounces parents who seek specialized clinical care and residential living for their autistic children. I am not sure if Cathy intended to denounce Erin Andersson of the Globe and Mail, or if her comments were directed at me personally, but she again makes it clear that parents should not be weighing in on autism issues on behalf of their autistic children - unless of course they agree with anti-cure icon Michelle Dawson. Cathy's logic is, unfortunately, confused by any measure, but it is a clear and concise reflection of the confused logic of Autism's Neurodiversity and TAAAPP ideologies.
For Cathy's benefit though I will plead guilty, guilty to her charge of trying to modify my son's behavior. Guilty of trying to modify his behavior to prevent him from banging his head on the wall until he injures himself, guilty of trying to modify his behavior to prevent him from biting his hands, wrists and ankles. I plead guilty to trying to modify his behavior to prevent him from walking into automobile traffic unaware of the consequences. I plead guilty to advocating for government funded pre-school, evidence based, autism interventions for my son and other autistic children. I plead guilty to advocating for autism trained teacher aides, resource teachers and autism suitable modified learning environments for my son and other autistic children.
Cathy, I thank you for showing me how intolerant I am in imposing on my autistic son Conor my beliefs that he should enjoy as full, enriched and rewarding a life, with as much independence, as possible.
For Cathy's benefit though I will plead guilty, guilty to her charge of trying to modify my son's behavior. Guilty of trying to modify his behavior to prevent him from banging his head on the wall until he injures himself, guilty of trying to modify his behavior to prevent him from biting his hands, wrists and ankles. I plead guilty to trying to modify his behavior to prevent him from walking into automobile traffic unaware of the consequences. I plead guilty to advocating for government funded pre-school, evidence based, autism interventions for my son and other autistic children. I plead guilty to advocating for autism trained teacher aides, resource teachers and autism suitable modified learning environments for my son and other autistic children.
Cathy, I thank you for showing me how intolerant I am in imposing on my autistic son Conor my beliefs that he should enjoy as full, enriched and rewarding a life, with as much independence, as possible.
autism
When homosexuality was considered a pathology, homosexuals who did not thought of themselves as disordered also adopted the label. So I don't see the point of your first argument.
ReplyDeleteSecond, I don't see any problem with not considering autism a disorder, while claiming disability services because of it. There's no inconsistency, given that disability and disorder are not the same thing.
joseph
ReplyDeleteYour comparison is invalid. To my knowledge homosexual as a term exists independently of medical manuals such as the DSM. It is a reference to a sexual orientation. Autism exists as medical disorder diagnosis. If a person calls themself autistic it is because they have a medical disorder diagnosis of autism. For a person to say they have autism but autism is not a disorder is contradictory.
Why is autism a disability? Because as some of your TAAAPP/ND colleagues like to say autism is different wiring. It is a neurolgoical disorder because it impairs the ability to function, hence it is also called a disability.
As usual joseph you fritter away at the margins without addressing the essential points. Should a disorde which results in serious self injury in some autistic children and limits their ability to learn and live independently be cured IF a cure becomes available? Or should parents not try to cure their children for fear of offending the sensitivities of strangers who have no responsibility for their children and little in common with them?
Please try to give straight answers to these questions joseph. Usually you avoid answering the difficult questions, preferring to change the subject and then you express surprise when I don't want to continue a never ending game of verbal tag with you in which you avoid the tough questions.
Harold,
ReplyDeleteSince the whole world agrees that it would be nice if autism could be cured, you can't expect sane answers out of the crazy people who argue against helping children.
I wish to comment on Cathy's last remark as cited by you.
ReplyDeleteIf parents genuinely want to care for their disabled child but cannot cope because he has grown up strong and has violent behaviour, I think it is unfair to blame them if they leave him in residential care.
But I assure you that among parents who leave their children in residential facilities, there are legions who do deserve Cathy's harsh words.
I've mentioned before on your blog BBC's documentary "Bulgaria's Abandoned Children". There was in it a mildly autistic 18-year-old girl named Didi (Diana). She was definitely high-functioning. She was speaking well and understandably (with mild speech defects) and was hand-writing every day letters to her mother. She had no apparent motor issues. I guess, she could be OK at some not too demanding job. However, in some regions of my country there is high unemployment and nobody would hire a person with even a microscopic difference from typical. More importantly, even if you have a job, typical Bulgarian wages don't allow you to pay rent or mortgage, so you don't move out. I lived with my mother until I married, and now I am living with my mother in-law. Didi also had to live with her mother. But the mother didn't want her daughter's company and sent her to the terrible institution shown in the documentary (where younger children were just starved).
At one moment, the care home director heard that there was a vacancy at another institution near to Didy's home town. She offered Didi's mother to move the girl there, but the mother refused. She said, "My daughter has quite good orientation skills, so if she is at a care home near our city, she will escape and come home."
I nearly cried as Didi said in front of the camera, "I will return to my city one day. I can marry and have children. And I'll be a good mother to them. I will never abandon them at a place like this."
Maya
ReplyDeleteCathy was not as careful about limiting her remarks as you. I don't know if there are in fact "legions" of parents who abandon their children as you describe. I do know that there are organizations of parents across North America advocating on behalf of their autistic children, seeking to treat, cure, educate or help in any way they can their autistic children.
And I know that at some point many parents can not continue to care for their children as they both age, with the children growing stronger and the parents weaker. A a certain point time catches up to the ability of the parents to provide care. Many autistic children can not live independently and must live in a facility. That is reality for many parents as it will some day be for me.
Being Autistic myself, I see the need to change the behaviors that would be dangerous to them. At the same time I don't think that they should strive to make them "normal" either!! Self-injury is a behavior that is dangerous to oneself either autistic or not!! Everyone has there strenghth and weaknesses. Autistic or not. I do think autistic voices need to be heard!! Agree or not!!! We can offer information those who are not autistic can. We are after all the ones who are on the inside!!!
ReplyDeleteIronic that the very person(s)diagnosed with autism, are expected to "filter and edit" their opinions into paragraphs that meet with our NT approval. Some opinions are generalized, unfounded attacks aimed at parents trying to help their children. What do we expect? If they aren't 'wired' to feel for anyone other than themselves-why are we surprised?
ReplyDeleteThese autistic individuals cannot understand why they should change to fit into "our world". (Ironically, the world is expected to change for THEM). If we can't see and do things their way, in effect-they have a meltdown. This may manifest in attacks, name calling, pent-up anger etc.
This is the whole basis of intervention in early childhood. To help the child become an adult who can adapt within today's society, AND STILL BE HAPPY.
It's glaringly obvious that the autistics that attack parents all have a common thread: They are angry. Many unhappy. For varying reasons we can't understand.
Should we blame them for a behaviors they cannot control, or for that matter, even recognize?
Should we blame them for being fed-up for trying so hard to "fit in", only to be ridiculed and cast out of "our society" just for being themselves?
I used to get angry and hurt when I was verbally attacked (sometimes viciously) for trying to help my young child.
Until I realized it's a draw. For every pro-intervention belief, there is rebuff from the pro-autism group. No one wins. And we all lose once we begin attacking eachother.
My son is 'done' with intervention - He's happy and society can't distinguish him as 'autistic' anymore. (The anti-cure autistics hate this outcome most of all).
Know what? All that matters is the happy, smiling child that tells silly jokes, is loved by his friends and smothers me with love. He talks about changing the world someday and I believe him!