An Autistic Perspective on Autism

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.

To dadvocate

I want to simply say that as an Autistic Mother of Autistic Children it is alarming to me to meet any parent that feels the need to “cure” their child of a part of who they are. This reeks of the foundations of a pattern of thought that allowed parents in Reich controlled Germany to hand over their autistic children to the government to be put to death since they were incurable. Eugenics is the result of people wanting to change that which cannot be changed and when faced with that reality they eliminate instead. The leadership of Autism Speaks stood beside Hillary Clinton when she made her remark that we need to cure and eliminate anything along the autism spectrum. I am along the Autism Spectrum. 6 of my children are along the autism spectrum. 2 of my grandchildren are along the autism spectrum. (I am only including the ones with official diagnoses. I have two more children and three grandchildren that are at this moment not yet diagnosed but squarely on the spectrum) I do not wish to be cured or eliminated. I do not want my children or grandchildren cured. I would like to cure the world and many of the parents of Autistic kids but I do not want or need to be cured. I have found in my advocacy work that the only Autistic people that want to be “cured” are those that have been severely persecuted by friends, family, and educators. They usually say that it would be easier to “find a cure” for Autism than to get all of the bigots to stop acting the way they do. Of course it does not help when the parents of Autistic children fight us as we try to advocate for acceptance and understanding. Instead of being our allies and standing with us to fight for your child’s right to be the best Autistic person he/she can be you choose to bemoan your condition as the parent of an Autistic child. You think because the child can’t do what other non-autistic children do that the child is suffering when in reality the only person who is suffering is you.

I am an Aspie. I am very “high functioning” but I am also the parent of a nine year old child that has only begun speaking to us in full sentences in the past year. he still only speaks when it suits him and he still cannot always communicate that he has to go to the bathroom when we are out in public. Of the six diagnosed children I have three that are diagnosed with some degree of Classic Kanner’s Autism. The other three are diagnosed with Asperger’s Syndrome. Two of those three have ADHD in addition to the AS. All of them have digestive tract problems caused by their co-morbidity of hypotonia except one whose digestive tract problems stems from his hypertonia. Most of them have proprioceptive issues also. Trust me I know Autism. It is a Spectrum and between me and my Autistic Husband and all the kids we have somebody strategically positioned all along it.

Someone else made a comment that all the Aspies are the “master race” stuff needed to stop. In theory I agree. However, that would be like asking a cat to stop defining itself if you constantly described it as being a disabled dog. It is not that we want to recognized as a “master race” we simply want to be recognized as a race. Actually a subspecies would be a more precise definition of what we are. If we were frogs then we would have been recognized as a subspecies but because we are Homo Sapiens we are relegated to being broken or disabled Homo Sapiens Sapiens rather than being Homo Sapiens Autisticus. Scientists divide frogs out into subspecies if the bumps on their backs are different in what is otherwise two identical frogs. Explain to me then why they will not divide us out into a subspecies? Arrogance, is the answer. The very same arrogance that most parents of Autistic children express when they say they are advocating for their child in one sentence and use the word cure in the next. Your child is not sick, your child is not broken, your child is not a burden. Your child IS Autistic.

Having an Autistic child only means that you need to learn a new language, stand on your head, and discover our perspective of the world in order to understand your child. It also means that you should be advocating for your child to be respected as an Autistic person. You should be advocating to make it illegal for any organization including religious ones to dismiss a child from a cheerleading squad because the child is Autistic. You should be advocating that the tax funded school systems remove fluorescent lighting from all buildings because they create sensory overloads in a huge number of Kanner Autistics. You should be lobbying for ABA to be banned because it is psychologically abusive to Autistic Children. Autism is a difference in the wiring of the Homo Sapien brain. SUch a wiring difference in any other species would create a subspecies label. The arrogance of Homo Sapiens Sapiens is that the “Doubly Wise” man is the only one in existance. If any deviation from the “norm” is found it is labeled. After labeling comes the attempt to assimilate the individual by eradicating the cause of the label. If this fails then Homo Sapiens Sapiens segregates the deviant and last but not least if an epidemic of this deviation exists Homo Sapiens Sapiens eradicates all who are affected. Arrogance!

Now don’t get me wrong, I think that nay help that can be given to aid any person to function in our world is good regardless of whether they are Autistic or Neurologically Typical (NT). I am not opposed to education for any child. Autistic childre require a different level and style of education but they deserve to be educated. When children come into this world they cannot do many things for themselves. they can’t feed themselves or use the toilet or talk. All those activities are learned behaviors. What is different about teaching those activities to my Autistic Child compared to teaching those skills to an NT child is merely the methodology used to do the teaching and the age at which the child will grasp the material. In a huge number of cases the cognitive abilities of the child equal or supersede their NT peers when given non-verbal IQ tests. It is not our goal to be superior to NTs. Most Aspies would loathe attention like that. A large percentage of Kanner Autistics would agree with that position also. We do not seek fame and often if fame comes to us we are very uncomfortable with it. Therefore, the last thing we would have as a motivation is the glory of being part of some “master race.”

With that being said, do allow me to point out that the rate of Autism id higher among the “geeky bookworms” kids than in the population of the world as a whole. In fact one of the most prestigious universities has a huge Autism rate among its graduates that intermarry. Many of the traits that lead these “geeky bookworms” or “tech geeks” to become successful in their area of expertise are autistic traits. Read about Vernon Smith, the Nobel prize Winning Economist and Aspie for example.

The thing that always amazes me is that Autistics are said to have problems with “Theory of Mind” when in reality it is NTs that have this problem. I have no problem understanding that you see the world differently from me. I simply choose to see it my way in spite of all of your attempts to change me into you. Why do you feel the need to do that? Well, from my perspective it is because you have a problem accepting that there is any other way to see the world. Harry Chapin did a song called “Flowers are Red” (google it) The song tells the story of a little boy who goes to school. During the narrative you find the boy interacting with two different teachers. Harry did not write this song about Autistic people and NT people but it fits. From my perspective, the actions of the first teacher leads on to believe she is an NT and the actions of the second teacher indicates that she is an Aspie.

I hate the divide that exists between the parents of our Aspie and Autie brothers and sisters and the greater Autism community. However, there is little that we can do to resolve that gap so long as the word “CURE” keeps rolling off your lips. Stop trying to find a cure and accept who we are. Educate our children in ways that we can learn and understand that we do not acquire skills in the same order as others. Piaget defined the development stages of NT children. Autistic children develop at a different pace. That does not make us broken or in need of a cure. We only need an educational system designed to educate us in our native language in a non-hostile environment. The non-hostile environment must start at home!

The very name “Autism Speaks” is presumptuous, implying that those involved with this organization “Speak” for anyone with autism. That they’d actually forbid the autists themselves to speak at the conventions just makes this group that much more transparent. As if that weren’t pathetic enough, the “Autism Speaks” lawyers threatened a teen autist
with a $90,000 lawsuit for creating a parody website called “NT Speaks” (using the same collective noun form, NT here would stand for “NeuroTypicality”–non-autists,
in other words).
Last year, another teen autist named Kenton Weaver, who desperately wants to be a pilot, took his dad’s car, drove himself to the airport without incident, boarded a plane alone & was flown across the country, where he visited other members of his family.
In one of the original reports on autism, Hans Asperger defined it as “an extreme variant of male intelligence”. This would seem to lead to the conclusion that autism (or perhaps, more to the point, the stigmatization of it) involves varying degrees of combinations of misandry (hatred of men or masculinity) &, perhaps, conformity, as possible causes or elements that aggravate the situation. It would also seem that subversive, psychological, ongoing child abuse is partly to blame as well. Many people simply seem to be in denial about so many things (including topics that are unrelated or only indirectly related to autism). If misandry is a factor, then it would follow that autist females might be what used to be referred to as “tomboys”.
Those who question conventional wisdom regarding autism & prioritize individuality over following dismissive “cure-bies” are helping make social progress possible. Even keeping in mind that the autistic spectrum is a pretty wide umbrella (making it even more suspiciously vague), anyone who continues advocating cures (especially without considering another perspective or without accepting the idea that there might be something seriously wrong with your attitude or your parenting) isn’t helping anyone (except maybe himself/herself/themselves). If you think people should all be taught to communicate the same way, consider how many languages there are in the world & how many different dialects there are in just the U.S.!! If someone doesn’t want to communicate at all, there might be a different reason than you think. If you can confirm that someone wants to be cured, ask yourself (& him/her) why. The following sites may be helpful in clarifying some things or in expressing other viewpoints: incorrectpleasures.blogspot.com & autistics.org