Autism Cure? It's About Functioning Not Conformity

One of the blog posts on this site received a number of visits from the Mother of Shrek Site, where Casdok, the author, and mother of a non verbal autistic young man articulated her views on autism acceptance in the context of what she described as a hypothetical autism cure.

In the course of that commentary Caskok asked what is meant by curing autism but she asked the question using the language of the Neurodiversity ideology to which she subscribes, which views autism not as a medical disorder but simply as a "difference". I posted a comment on that site although I don't know, as I  post this comment, whether it will pass moderation so I have reproduced it below in italics following the question asked by the author which I have also posted and  highlighted in blue.

The wording of the question posed by the site's author obviously provides its own answer. The concept of cure as providing the person cured with the ability to understand the world, to communicate better in the world, to function and even function independently in the world is not part of the question as framed by the Neurodiversity embracing Casdok.

Cure is not defined by Casdok in the medical sense of curing the disorder in question, of helping an autistic child or adult overcome the serious cognitive, behavioral and communication deficits that restrict the lives of so many with autistic disorder.  Instead Casdok, consistent with Neurodiversity ideology, asks the question from the perspective of  a social model of disability, as conformity to societal norms:

"""" So what do we really mean by cure? To make someone conform? To be socially acceptable? Assimilated into the collective?! Why can’t society accept everyone is different?"

You have just provided your definition of cure by rhetorical questions framed in the language of those who do not view autism disorders as disorders.

I don't know why you obtained an autism disorder diagnosis for your child. We sought medical attention for our son without knowing anything about autism at that time. We sought attention because he wasn't developing any communication or other functioning skills anywhere near the level of his older brother or any other child we had known.

Cure? Cure would mean providing our son with the same, or similar, ability to understand, function in, even participate in the world that you and I take for granted. Are you, and those who agree with you in the comment section unaware of the autistic Nova Scotia boy who wandered off to be lost forever in a snow storm? Do none of you ever read of the other autistic persons who are lost in traffic or wander away as did Keith Kennedy to be lost in the woods for a week? Are none of you aware of issues of serious, even deadly self injury that affect the severely autistic?

I have been involved with autism advocacy in our home jurisdiction for a decade now. I have visited institutions where severely autistic persons live dependent on the care of others. I have helped some persons with Aspergers in the legal system. I have advocated with other parents, successfully, for pre-school government funded autism interventions and for accommodation of autistic students in our neighborhood schools.

Of course I want my son's disability to be accommodated and I have used  all my abilities to ensure that happens for him and others where I live. But he, and many others with Autistic Disorder, will live their lives within a facility dependent on others with limited understanding of the world.

All cures are hypothetical, until sufficient research is done to find one.

If I could snap my fingers and cure my son, resulting in him having the ability to understand the world more fully, to communicate more fully, to function and survive independently would I do that?

You're darn right I would."

I am not sure how a mother of a non verbal autistic adult comes to subscribe to the social model of disability,  I wish her son well but I hope, for the many parents who continue to try and help their autistic children live the fullest, most rewarding lives possible, and especially for the children themselves, that the research to find cures for autism disorders continues.  If the day that cures, or even significantly beneficial treatments, are found that improve the lives of autistic children and adults then real choices can be made, even if  some would choose not to provide their autistic loved ones with the benefits of such treatments and cures.

Curing autism is not about conformity. It is about giving people disabled by  autism disorders the ability to function more fully and independently in the real world. It is about giving them the same opportunities to experience life that the rest of us, the alleged Neurotypicals, enjoy.

For this parent curing autism is about helping our autistic children enjoy life to the fullest. 

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Stephanie Lynn Keil on Curing Autism

I most definitely want a cure for those most profoundly disabled; I want a cure for my most disabling aspects. Autism has ruined my life, like it has ruined many others: I can't lie.

And no, I don't believe the self-diagnosed have any right to speak for the most profoundly disabled or really for anyone with autism.

Stephanie Lynn Keil, Curing Autism, A Grand Illusion, November 30, 2009

Stephanie Lynn Keil is a person with an autism disorder who speaks honestly and from a very personal, non ideological perspective. Like Jonathan Mitchell and Jake Crosby she wants to be cured of her autism. Like them she will not likely be interviewed by the New Yorker, CBC, Time, Newsweek or CNN which will likely continue to feature the views of anti autism cure proponents. Fortunately the internet provides a means for Stephanie, Jonathan and Jake to advance their positions to counter, to some extent, the dangerous positions of the anti autism cure "self" advocates over whom the mainstream media fawns unrelentingly.

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Neurodiversity's Extremist Autism Cure Opponents - By What Right Do They Object?

The declaration has been made by celebrity "autists"or "autistics" like Michelle Dawson, Amanda Baggs, Ari Ne'eman and various Neurodiversity bloggers that ""We", persons with autism spectrum disorders, do not want to be cured".

These persons with mild autism spectrum disorders, including Aspergers, routinely declare that "autistics" do not want to be cured, should not be cured, and in fact can never be cured. Their implied claim to omniscience aside, by what right do these people purport to speak on behalf of other people's children, on behalf of people much more severely affected by autism disorders than they with whom they have little in common, and even on behalf of higher functioning autistic persons who oppose their ideological opposition to curing autism?

The same people who object to Autism Speaks, who turn out in massive droves of 5, 6 and even 7 people to protest at large Autism Speaks rallies of thousands of parents and autistic people, and who dwell in the lavish attention of CNN, the NYT, CBC, the New Yorker and other mainstream media outlets, demand the right to impose their ideological opposition to autism cure on my severely autistic son and the children of other people with autistic children. On what grounds do they claim this right?

Do I have the right to demand that Ari Ne'eman seek a cure for his very high functioning Aspergers? Do I have the right to tell Michelle Dawson who excelled in the challenging work environment at Canada Post, appeared as an "autistic" in the Supreme Court of Canada and before a Canadian Senate committee to oppose ABA for autistic children in Canada that she must seek a cure for her unspecified autism spectrum disorder? Do I have the right to tell Amanda Baggs, the author of many very sophisticated disability essays on autism and other medical conditions and the producer of videos depicting what she considers autistic stimming, that she must seek a cure for her autism spectrum disorder?

The answer, of course, is NO. And Ari, Michelle, Amanda and other ideological opponents of curing autism have no right to oppose or interfere with attempts by families, governments and society to cure their own autistic children or to cure those autistic adults like Jake Crosby and Jonathan Mitchell who seek cures for themselves.

I have a message for Ari, Amanda and Michelle: I do not seek to cure you of your Aspergers or high functioning autism disorders. Do not claim the right to speak on behalf of my severely autistic son. You have no right to interfere with efforts by me, or other parents, seeking to help or cure our autistic children. None at all.

Someday, hopefully, even if you do not, the dilettante autism journalists at the NYT, the CBC and other MSM outlets will come to understand that you are interfering with the basic rights of families and parents to help their own children.

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Autism Can't Be Cured Dr. Mottron Takes Autism Speaks Cash For Research

In Why would autism speaks give Laurent Mottron half a million dollars? Autism's Gadfly, Jonathan Mitchell, has highlighted the award by Autism Speaks of almost half a million dollars in autism research funding to Dr. Laurent Mottron. Jonathan has some serious questions about the grant to Dr. Mottron by Autism Speaks, an organization that states on its web site that:

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism;

Dr. Mottron is an autism expert who does not believe that autism can be cured. He is referred to as Dr. M by the Canadian Human Rights Tribunal that heard the discrimination complaints of his colleague and mentor Michelle Dawson in Dawson v CPC. In that case the CHRT described Dr. Mottron's expertise:

b) The testimony of Dr. M

[99] At the beginning of his testimony, Dr. M., who is a psychiatrist, was qualified by the Tribunal as an expert in autism. Dr. M. filed a report as well as three letters pertaining to Ms.Dawson’s condition.

[100] Dr. M. testified on the nature of autism, autistic individuals as well as on Ms. Dawson’scondition. The credibility of Dr. M. as well as the accuracy of his statements and opinions was not challenged by the Respondent. The Tribunal finds Dr. M.’s testimony highly credible even ifthe evidence shows that in recent years, Ms. Dawson has worked with him and has co-authored scientific articles with Dr. M.

The Tribunal did not mention that in addition to cooperating with Ms Dawson on scientific articles he has also assisted her with her "autism" activism. In the Auton case Dr. Mottron supplied an affidavit in support of her application for intervention in the course of which she opposed funding of ABA treatment for autistic children. The good Dr. Mottron has also appeared with Ms Dawson on numerous CBC features from En Jeux to Quirks and Quarks to the feature "Positively Autistic". In the last feature in particular some very high functioning autistic persons and persons with Aspergers declared made it known that "we" don't want to be cured of our autism.

Dr. Mottron was very clear about his views on curing autism in his expert testimony before the CHRT:

[86] Ms. Dawson testified that autism is a neurological disability and that people generally do not have a good understanding of this reality. Ms. Dawson stated repeatedly that autism was not a mental illness. For her, a mental illness has an onset, various treatments, and there is a return to the previous state to a greater or lesser degree. Both Ms. Dawson and Dr. M., as will be seen, pointed out that the notion of curing autism was nonsensical. Still many people want to cure autism.

Despite his expert opinion that curing autism is a nonsensical notion Dr. Mottron still held out his hand for research dollars from Autism Speaks, an organization that seeks to cure autism. Apparently money, like politics, makes strange bedfellows. But why did Autism Speaks fund research by Dr. Mottron the outcome which will likely be more of the same stuff he has been doing for years; documenting the superior intellectual gifts of high functioning persons with autism spectrum disorders?

In the past Dr. Mottron's study subjects have been persons with HFA, Aspergers and some savants. I have not seen any of his works which focused on those "other autistics" the low functioning autistic persons, including many with Intellectual Disabilities. His studies are unlikely to be of assistance to the most seriously challenged autistic persons. Obviously, given his views about the "nonsense" of curing autism the good Doctor's research will be of no assistance in achieving a cure for autism either.

Money well spent by Autism Speaks?

Personally I don't think so. Of course Dr. Mottron probably has a different "notion".

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Time To Take Autism Seriously - Utah Man With Severe Autism Found

Even the cases of two young men with severe autism implicated in homicides, one involving his mother, are not enough to shake some "joy of autism" Neurodiversity followers from misrepresenting the realities of autism. Even some well intentioned, polite people just don't get it. They just refuse to see the harsher realities faced by some autistic persons.

In Utah another event highlighting the serious realities facing some with autism and their families has developed since Sunday evening when severely autistic 20 year old Justin Bailey went missing. It is now being reported on ParkRecord.com that Mr. Bailey has been found and appears to be OK.

Autistic children and adults go missing with some frequency. My own severely autistic son went missing while I was occupied on a business phone call several years ago. He crossed a busy commercial street near our home before a Good Samaritan stopped his vehicle and took him to an adjacent convenience store where the police were contacted and where I was able to retrieve him after calling 911.

Last year we were all relieved to learn that an autistic man, Keith Kennedy, was found alive in the woods and was OK almost a week after he wandered away from the camp at which he was staying in Wisconsin. It does not always end as well as it did for Keith Kennedy and Conor Doherty and as it apparently has for Justin Bailey.

Wandering, and the dangers of every day life that some severely autistic persons do not understand, are very real challenges that should not be ignored in an effort to present a "posautive" view of medical disorders, of autism disorders. We must continue to provide ABA to help autistic children develop to their fullest potential. We must seek even more effective treatments ..... and cures ..... for autism disorders.

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