Monday, August 24, 2009

Orac and his neurodiversity followers get it wrong

I have been reading the latest blog entry of "Orac", a cancer surgeon who occasionally writes about autism and the anti-vaccination movement and seems to have a neurodiversity following. I could not resist making a comment there when I felt that he was trivializing the hardships that persons with mild autism like myself have endured in their life. I won't post my comment here but I guess anyone interested can read it on the respectful insolence blog.

Orac writes: it is disturbing that she views autism as so frightening. The main reason it's frightening is because that's the message in the media and the anti-vaccine movement: that autism is terrifying, that it "steals the child's soul" (that's what Jenny McCarthy's co-author has said); that it is beyond hope. While there's no doubt that raising a child with severe autism is an incredible challenge, the image of autism many parents have is that it is all like the most severe cases, when it is not. As the term "autism spectrum disorders" implies, it's a spectrum, from the very mild to the very severe.

So, it would appear that Orac would believe that a mild case of autism such as I have is nothing to be frightened of. He does not understand what it is like not to have romantic relationships, not to be able to make a living, having had to attend special education schools, having been fired from multiple jobs, having phobias, having an uncontrollable addiction to self-stimulatory behaviors and having a perceptual motor impairment that prevents people from being able to handwrite very well or do other activities. He seems to believe that the prognosis for those with autism, particularly the mild cases, is not hopeless, but I must disagree. Aside from the severe cases, people are afraid of autism because it is a problem, it makes lives of those and their loved ones quite difficult. I agree that it is a noble goal that he disputes the anti-vaccine crowd and speaks out against the biomed quackery and I commend him for it. As far as I can tell, Orac has no personal experience with autism whatsoever. He seems to have some unrealistic ideas about autism that come from having listened to the mistruths of so many members of the ND movement who read and comment on his blog. But there is another side to this story and I believe that Orac should listen to persons on the spectrum who are not neurodiverse. I hope that he will read my comments and at least think about them.

Of course, various neurodiversity spinmeisters who read his blog tried to refute what I said. One person named Pablo did not understand how I would complain about ND on one hand and also complain about being in special ed on the other. He has the false belief that ND is in favor of equal rights for persons with autism and want them to be educated with mainstream students. Pablo obviously does not know about Ari Ne'eman's and ASAN's activities in lobbying for full federal funding of the horrible IDEA law. This law helps parents pay for special education schools. So exactly the opposite is true. ND tries to lobby for special ed, at least some of them.

Another response from someone called Clare:

Ummm... since many of the self-same advocates are themselves mildly autistic, I think they are very well aware of the hardships... That said, I think you misinterpret Orac's point, which is that blanket characterizations of autism as a "frightening" condition are likely to dissuade parents from seeking realistic and effective medical advice (and interventions as and where appropriate), and instead drive them towards "therapies" that are ineffective and frankly dangerous

My dear Clare: I am very skeptical of the autism of many of those in the ND movement. Most of them allegedly have Asperger's and did not have the speech delay I had as a toddler. Even the one's claiming Asperger's I question whether they really are on the spectrum and I know many of them never went to special ed schools, were able to get married and in some cases make a good living. I don't believe most of them have had experiences like mine. If research could go ahead unimpeded then perhaps we could find real effective treatments or even a cure. But the ND's that Clare defends don't want this. They want to stop science research that will find the genetic and neurologic etiologies of autism that will lead to real treatments. Unless it is Laurent Mottron's research just done on high functioning autistics that just tries to prove how smart or how great autistics are. Until real answers are found many parents will become desperate and try quick fixes that might be dangerous and are of dubious value. The ND movement just helps propagate this by preventing legitimate treatments and cures from being found.

One person calling themselves Calli Arcale challenged me to tell Temple Grandin what I said, even though my problems are more severe than Grandin's. She (or he) also goes on to state that if certain people engage in fear mongering against autism, then people will spend money on chelation and other ineffective biomed treatments. They state that autism is manageable so, they can just do these manageable treatments rather than the biomed/DAN type treatments. I do not agree that autism is manageable. I do not believe there are any effective treatments and the prognosis for most persons with autism, even mild autism, is poor.

She goes on to state:

People get the idea that autistic people are monsters, and then they don't want to spend money to help them. They want to lock them away where they will not hurt the general public. That's what was done with autistic people a century ago. People were so afraid that they decided that these people were not really people, and that it would be okay to take away their rights to life, liberty, property, and self-determination.

jonathan, I think making "neurodiversity" a movement a la feminism has some of the same dangers that feminism itself has -- that is, it runs the risk of becoming a parody of its goal. That doesn't mean it's always wrong, nor does it mean that the basic idea isn't sound. Feminists are definitely known to go overboard; but women do deserve equal rights to men. Neurodiversity could eventually go too far as well; but that doesn't mean autistic people (and depressed people, and addicted people, and so on) aren't every bit as worthy as "normal" people.

You say that neurodiversity has had the opposite effect, that it has increased stigma -- could you elaborate, please? I'm not aware of any instances of this happening, especially since very people in the general public are even aware of the movement. (They're more aware of Age of Autism and such.)

Needless to say there are persons with autism who hit babies and commit crimes and even kill people as a direct result of their autism. That is not to say the majority of persons with autism are like that. But autism being a dangerous condition in at least some cases is certainly a reality. If anyone makes autistics look like absolute monsters it is those in the neurodiversity movement. From being sweared at by David Andrews, from having Clay Adams and Phil Gluyas insult my mother and write insulting name calling comments which I never post on here, and going to other blogs and ridiculing me and from the abusive and condescending remarks I had to endure from Alyric before she passed away. Not to mention the fact they teach teenage kids like sadder but wiser girl that people like me are like Jews who help Nazis murder other Jews and Ari Ne'eman claiming autism speaks is morally complicit with murder and the autism bitch from hell saying that persons like myself should be strangled to death and turned into cat food. This is the stigma that is created towards autistic people. This is one reason why I blog critical posts of neurodiversity. I feel they make us all look like monsters when most of us are not like that at all. With increased media coverage, particularly of Ari Ne'eman, there has been much greater awareness of neurodiversity and this will probably continue.

Comparing the woman's lib movement to ND is absurd. ND is not about equal rights. It is about denying persons the right to treatment and cures that might exist. It is about spreading propaganda like the autism no myths video staring Ari Ne'eman who claims that the prognosis for persons with autism is just fine when nothing is further from the truth.

So Orac and his ND followers get it wrong.


farmwifetwo said...

Looks at youngest son who right now is happy and playing. Looks at youngest son who gets upset when he can't go and do things that older bro can like going to "camp". Looks at youngest son and remembers conversation with ex-VP and parental fears over new-VP this year and how comforting it is to know you will have the same EA (Ed assist) person you have had the last few years. Yet, knows youngest son will not be able to do the work, the reading, the math, the playing... that his friends are going to do.... Not to mention the fact we're now on the "big kids" side and there's no fence. Not to mention on the big kids side he can't play on the equipment every day and how are you going to explain that to him?? How is he going to "hang out" the other days??

Looks at youngest son and remembers the wet and stinky underwear of a still only 75% toilet trained nearly 8yr old sitting beside the machine waiting for the next load tomorrow.

Autism is not "glorious".... when one is at the mercy of the system. Autism is not "glorious".... when we know about children and want to play with them and don't know how.

Autism.... sucks.

Does is mean I don't love him... not a chance. Does it mean I won't fight for every service I can get... damned right...

But don't tell me living trapped in the land of autism is "wonderful"... Those people have no idea what it means to be trapped in your own brain and watch the world go by from the inside.... looking out.

Ian MacGregor said...

I posted this on Orac's site. Feel free to delete it.

About two weeks ago the truth about autism hit home. I received a call from my daughter's teacher about one of my daughter's classmates whom I'll call S. S didn't look like my daughter, K, but her mannerisms were almost identical. S was two years younger than K and both were severely autistic. The phone call was to inform me that S had drowned in the family pool. S was 10 years, her parents were away and left her with a 19 year-old who had sat S for about 3 years.

The parents and sitter are heartbroken. Anyone with a severely autistic child knows how fortunate one has been not to have had something similar happen. Just yesterday, my wife took her eyes off of K for an instant at Target. She vanished and would not come when called. The store called a code yellow and it took about 15 minutes to find her in another section of the store. She could of just as easily wandered out of it.

So please do tell the parents of S that autism is nothing to be frightened of. Autism killed their daughter.

K returns to school tomorrow. I doubt she'll notice S's absence even though they sat next to each other. About 3 months ago, we had to have the family dog put down due to a brain tumor, and now her classmate has drowned. We didn't spend much time explaining these to K, Death is something of which she has no concept. So perhaps one can add as a benefit of autism the lack of grief over losing a pet and a schoolmate.

There are those who profit from the wishes and prayers parents have for their children to lead a normal life, many them fully believing in the unproven and disproved hypothesis and tonics they sell. There are also those who seem to want to make light of the condition. S is beyond help, but we need sound research to help those like my daughter, and if that research were to help people like Jonathan instead, it would be money well spent.

navywifeandmom said...

I posted a comment yesterday; I don't know why it didn't go through (if I said something rude or offensive I am sorry), but basically I have to wonder at a medical blogger who does not even have children of his own who says "vaccines do not cause autism, but we need to spend money to find the real cause and cure" and has a huge ND following on his blog in the comments section, especially because ND says it shouldn't be cured and instead celebrated.

Autism is frightening for the same reasons Ian McGregor just said - the lack of awareness of danger (the drowned child could easily be my kid; she is fascinated with water). It isn't frightening because "Jenny McCarthy says it is". Give me a break.

navywifeandmom said...

Ian, I forgot to add,

"So please do tell the parents of S that autism is nothing to be frightened of. Autism killed their daughter."

Oh the NDs have a pat answer for that one, they will say that "neurotypical children drown all the time"@@. Well, like you I have a severely autistic daughter and can understand how easily they can wander and get into trouble and how much easier it is for a child with the condition to die an accidental death. Every time my eyes are off her for even two seconds I am taking a risk.

Orac is completely clueless, I am sorry. He has no children of his own, let alone any with severe autism. You really have to live with it to have any kind of an understanding of the seriousness of it.

jonathan said...

Navywife: I have no idea what happened to your comment. So far, I have had no reason to reject any comment you have written. I do moderate comments, but I publish most of them. I sometimes have to delete comments that are abusive to me or people who have been so abusive or threatening to me in the past that I don't allow them to comment here.

navywifeandmom said...

Okay, I thought it just must not have gone through because I didn't say anything offensive (or I didn't THINK I did). I've had comments just not make it through on blogs before for technical reasons.

I have also found comments sitting unmoderated on my own blog that are not rude or offensive and they are weeks old and said to myself "now how did I miss THAT one"? LOL!

Anonymous said...

"So, it would appear that Orac would believe that a mild case of autism such as I have is nothing to be frightened of."

Not nothing to be frightened of.

Just not something to be *more* frightened of than you are frightened of measles, mumps, rubella, etc.

Orac's way more against the anti-vaccination crowd than against acknowledging autism, and some of the anti-vaxers veer off into the "better to be dead of measles than to have any autism!!!!" direction.

Anonymous said...

Yeah, Orac's PRO-VACCINATION, not pro-autism - it's not all about you and your condition.