An Autistic Perspective on Autism
Wednesday March 5, 2008
Alex Plank manages the self-advocacy site "Wrong Planet." Recently, he produced an article for the site entitled Ten Myths of Autism Debunked. The article addresses some of the most common myths of autism (people with autism are all alike, for example), and responds with information available on a number of sites including this one. But unlike me, Alex can legitimately claim to represent people with (at least high functioning) autism. And, from that perspective, he includes this statement in his article:
Myth #3: Autistics want to be cured.Alex also addresses the autistic perspective on organizations like Autism Speaks, making the point that "Autism Speaks, the largest Autism organization in terms of financial capital, has no autistic employees and no board members with the condition. They disallow autistic individuals from speaking at their conferences with the rationale that "it wouldn't be appropriate."Most autistics, in fact, do not want to be cured because they've already accepted autism as part of their personality, identity, and lifestyle. You may not understand why anyone would want to be diagnosed with a psychiatric condition, but even homosexuality was listed in the DSM as being a disorder at one point in time.
If you're interested in connecting with -- or even just learning about -- the autistic perspective on autism, Wrong Planet is a good place to start. Of course, there are other strong autistic voices out there -- and I'd be very glad to read your comments regarding blogs and sites by and for people on the autism spectrum.
Comments
I agree with Alex Plank’s statements for the most part. I understand, however, that some autistic people do want a cure, although I am not one of them. I think that articles and blogs of the opinions and perspectives of autistics are very important for people to consider.
I find it very disturbing (but not surprising) if those statements about Autism Speaks are true. These policies are very discriminatory and unfair to autistics. What is inappropriate about an autistic individual speaking at a conference? Other organizations do this all of the time!
AspieMama
~A Blog for Parents with Asperger’s~
http://aspiemama.blogspot.com/
Like many advocates involved and actively supporting Autism Speaks, it’s predecessor organization, Cure Autism Now, and other advocacy groups in the autism community, I am the parent of a child with autism. Unlike Mr. Plank, my son is unable to advocate for himself so it became my responsibility to advocate for him. Organizations like CAN formed and grew as parent-led grass roots organizations over the past decade because many like me thought that very little was being done to fund the study of autism and develop therapies to help ameliorate the serious and often debilitating and separating conditions that impact many on the autism spectrum.
Our children could not speak for themselves so it became a moral imperative for parents and caregivers raise their voices to help get the urgent needs of their children addressed.
Mr. Plank seems to lose sight of the nature of autism. It is a spectrum disorder. No two people who have autism are alike (he states) but it is being increasingly accepted in scientific literature that there are distinct sub-groups (or “autisms” as I like to say) who share many similar biological, neurological, and medical traits who would benefit greatly from new therapies and, yes, perhaps one day a cure. One subgroup’s views and needs (like Mr. Plank’s group) can and are much different than another’s in the autism community.
I agree with Mr. Plank that more should be done by AS to reach out to include the voices of the subgroup of individuals on the autism spectrum in his NeuroDiverse community. But it is a two way street. I encourage all groups to advocate for their needs (if they are able to) and I strongly supported the effort to end what I considered to be an offensive ad campaign by NYU. Accomodation and acceptance are good things and there are many areas of common interest that could be developed between subgroups in the autism community.
Where we seem to diverge is that, while he states that all autistics are different, he, like some in his community, seem to have a monolithic view of the disorder that prevents civil discussion on setting scientific goals for research leading to therapy and a cure for some autisms. He says he wants research funded but accuses AS of pursuing an agenda of eugenics (again unsupported). That doesn’t strike me as a very effective way to reach out to get his group’s research priorities funded. His sweeping statements like “Most autistics do not want to be cured” as well as many other statements in his manifesto strike me as little more than unsupported opinions that should be read and understood in the context of the politics and desires of his subgroup, rather than the whole autism community. Frankly, I don’t think he debunks much of anything in his piece. Yes, by all means learn about the “autistic perspective” but don’t mistake it for the perspective of most in the mainstream of the autism community.
Though I would love to cure my apraxia/dyspraxia many autistics don’t want a cure, a few do but
We parents have a hard time dealing with that fact that they can’t talk doesn’t mean we as parents are their voices. Yes I am going to do interventions with my daughters most autistics are for interventions but many don’t like aba.
While we do need a cure for Rett’s beau use it shortness the life span of the women who have it. Boys who have it rarely live beyond age two. I don’t believe Rett’s is autism because it has a different pathology and should be removed off of the spectrum.
I think there needs some clarification about “curing” autism and parents having their children go into various therapies to help aide their developmental milestones.
There is a huge difference between the two, although as a parent, if you stand up in public and say you don’t want your child “cured” of autism, you often are considered as a parent who is not looking out for the best interest of their child. When a lot of people go out and say that they successfully cured their child of autism, rarely do you hear what the child has to say about it…did they want it done, or was it more important to the parents to have their child “cured”.
That said, I suppose I am one of those parents who doesn’t want her son cured. I don’t want my son cured of autism, but that doesn’t mean we don’t work hard to help him become the best he can be. I don’t know my son any other way, and he doesn’t know himself any other way either, and my belief is that all of my other children are unique with their personalities and challenges, and we are not wanting to cure them of that, so why do with our one child who has autism?
Do I speak for all? Nope, I speak for my son and myself. Will I probably get hauled over the coals for this comment? Probably. However, since re-evaluating our stance on autism and developing this view and belief, our son has come farther than when we were not sure what to believe.
The only thing to truly keep in mind is that parenting does not come with an owners manual for a reason. There can’t be one. We make mistakes along the way, and regardless of what we do to raise our kids, there will be some things that they may not appreciate and will tell us when they are adults. However, if we know what we believe in is morally and ethically right, and done out of nothing but love for our kids, then we can stand firm during those future discussions and tell our kids that we did the best we could do with what was available to us and it was all done with love.
We can never ask our kids to do better than their best, and as parents, we should expect nothing less of ourselves, regardless of what our beliefs of curing/not curing autism is.
Caroline
I agree with Caroline… I wouldn’t change my children with autism; I love and accept and adore them, any way they were born. However I can see why some want autism “cured” ~ the difficulties that they face, like the social situations every day, are very hard and it breaks my heart. I want acceptance of ALL syndromes and disorders. But that is not to be.
ms.wilson67@yahoo.com
As the parent of an 18 year old son who is Autistic and believes in Santa Clause, I find the “Neurodiversity” movement, and journalists who fall for it, stupid and ludicrous.
nybody who purports to oppose a cure for Autism really ought to change somebody else’s diapers for, say, thirty years, because that’s the sort of thing that autistics frequently have to have done for them. As children, or even adults, they often have to be confined in their homes because, if they are not, they run randomly until they encounter a dangerous situation and are killed. They typically cannot find normal employment as an adult. They may never make love to anybody. Often times autistic children smear their own feces all over the walls of the homes where they live. They often can’t drive a car as adults. They often develop phobias. They often develop OCD. They are more likely to have a seizure disorder than other people. One recent study estimates the typical lifetime cost of autism to be seven million dollars a person.
Visit the Autism Speaks website (www.autismspeaks.org) nd see the video “Autism Every Day.” Much of what I have described can be verified there. Do we not have a duty to try to cure Autism? In my opionion, the answer is yes.
I agree with the views expressed by Dadvocate and MS.
Neurodiversity, in my opinion, is a harmful misrepresentation of the realities of autism disorder.
Alex Plank has no idea what my son, with Autism Disorder wants or does not want an he has no right to speak for him as his quoted comment purports to do.
I don’t think that neurodiversity is “stupid and ludicrous.” I advocate for this because I have a right to exist how I am. I am not a burden; I am married, have a family, have an advanced college degree and a good job. I live in my own house and pay my own bills. I also have Asperger’s. I like being the way I am. I do support measures to help other Aspies and Autistics achieve independence, which, I believe, many can! But with so much money being devoted to researching a “cure,” how much is left over to help educational and vocational programs?
I honestly don’t have experience with issues of “severe” autism, but it is not fair to present this as the only type of autism. Unfortunatly, this is what “Autism Every Day” does. It is not a fair or realistic portrayal of the spectrum of autism. It is a tool to raise sympathy in order to get donations. It also practically promotes the killing of a child with autism. I simply can’t support that regardness of the good the makers of the video may have been trying to do.
AspieMama
~A Blog for Parents with Asperger’s~
http://aspiemama.blogspot.com/
What one must understand when dealing with Autism, and what many autism “advocates” fail to understand is that it is a spectrum. There are many different levels as to the severity of autistic traits, and the intelligence level of of people with Autistm Spectrum Disorders can vary from severe mental retardation to geinus. I am not a psychologist, I am a young adult with Asperger’s syndrdome and an IQ of 156 (150 is geinus level). Would I want to be cured? No. Would someone who suffers severe mental retardation to the point of dehabilitation want to be cured? Maybe. Organizations such as Autism Speaks are laboring under the delusion that all autistics are unable to think for themselves, and as such, need this organization to make their decisions for them, when in reality only a fraction of them do. I neither oppose nor support the idea of a cure, but I DO oppose those who believe this ridiculous, stereotypical misconception.
My son would fall into the so-called “low-functioning” area of the so-called “spectrum”. I am interested in making sure that, to the maximum extent possible, my son is able to function as an independent person. Do I believe he had a “disease”? No. I thing Temple Grandin’s perspective, as expressed in “Animals in Translation”, makes a fair amount of sense.
As for changing his pull-up: Did I plan on having a son who still needed a pull-up at 8? Of course not. But I don’t mind. He’s my boy. If that’s what he requires right now, I’m in. Just as I would be in if my parents got to the point of requiring that type of assistance. That’s what unconditional love is all about. The joy he gives me far outweighs the inconvenience he presents to me.
As to the whole neurodiversity movement, given that I am an NT parent, I don’t see how I can have any personal opinion as to its appropriateness. I will make sure that I place my son in a position to become aware of it, and will trust him to make up his own mind. I have come to learn that just because he does not currently communicate in a verbal way that I can understand, that does not mean that he does not have a discernible point of view.
I have to admit, I get tired of listening to parents whine about how tough things are for them. Love is always about being placed in a highly vulnerable position. Unconditional love is about being fine with that.
I think Alex Plank is doing an excellent job.
I think the curebie perspective is harmful. I think that people are hateful.
Now let’s see how long it takes for someone to tell me to shut up.
(yup, I’m illustrating a point here).
I hate it when people whine and moan about how some aspies are deciding to- GASP!- state their opinions about autism. In fact, the common thing they say is “Aspies have no empathy!” and therfore,their opinion is invalid.
What is wrong with some of these cure-advocates!?
Look, this guy has a point; a lot of them DON’T want a cure. It’s wrong to presume that he means that no-one wants a cure. Many do and that’s okay for them, but personally, I think that autism is uncurable. I mean, even if it is brain damage, brain damage is irreversible. What else can they do except learn to live with it?
And who says that he means “Don’t help them”? When did “learn to accept yourself” become “Never get any treatment”?
If people are allowed to call autism a “disease” and an “Epidemic”, then why can’t these people call it a blessing?
My opinion is that people have to start building bridges because this debate is not going to get any further if people don’t respect each others opinions and work together.
I am personally sick of all this whining and emoing about autism. On the other hand, all this “Aspies are the master race” stuff has got to stop.