Monday, August 17, 2009

A quick resolution, but now what?

I see that the neurodiversity movement is once again patting themselves on the back for a victory in their latest cause celebre'. A blogger known as Club 166 has written about it
Apparently, there was a billboard on a sign in Pennsylvania put out by one of the chapters of the autism society there that read: If 1/150 children were kidnapped, we would have an emergency, we do autism. Predictably, club 166, and other members of ND took umbrage to this sign and wrote a letter protesting the sign to the autism chapter's president. Other members of the ND movement lead by no less than the August Ari Ne'eman, president of the autistic self-advocacy network, followed suit and also wrote protesting the sign. Previously about two years ago (or maybe a year and a half ago) Ne'eman and others lead a protest to have the famous ransom notes campaign ended. They were successful in this end. Interestingly, well-known ND blogger autism bitch from hell joined in the fray. This is a woman who apparently finds humor in saying that autistic persons such as myself who desire a cure should be strangled to death and turned into cat food, yet somehow finds a sign saying that autism is as bad as being kidnapped offensive, go figure.

The issue was quickly resolved, as Amy Wallace, the president of the chapter, wrote an apology letter to club 166 and the sign was removed. ND rejoiced in this great victory.

This sign was not even exactly like the ransom notes campaign which stated that autistic children were being held hostage. The sign just said if children were kidnapped it would be an emergency but did not say the autistic children were being kidnapped.

A victory for ND? Yes, I agree, it was. However, more importantly was this a victory for autistic persons and their families? I do not believe it was. If I remember correctly club 166's son is 9 years old-still not old enough to have faced all of the challenges that autism will impose when the person on the spectrum reaches adolescence and adulthood. What does club 166 really know about the adolescence angst of rejection? What does he know of being fired from multiple jobs and not being able to make a living. These scenarios for his son "buddy boy" when he is older are certainly not implausible. How will having get rid of this billboard help "buddy boy" to have a decent life, with friends, a decent education, a job. How will it make a difference in his life. Will he be able to function in society properly? Will he be able to have hobbies and do the things he wants?

I will admit, I don't know anything about buddy boy's clinical picture, so I will talk about something more generic. What of even relatively high functioning (mildly) autistic children, who can't even get through kindergarten and get in trouble for breaking crayons and not being able to pay attention to the teacher, only to have to repeat kindergarten? I know of one case of this, as the mother of a boy who had this recently happen to her son had written me and my mother about this. I met this boy. He is 6, has mild problems compared to many autistic children. I wonder though about his self-esteem at having to repeat kindergarten. How will this help high functioning people who have trouble managing their affairs, paying their bills, having independent living skills. How will it help them behaviorally if they can't keep quiet in a movie theatre and disturb other patrons? I know of one autistic child who did this. How will it help one person who was kicked out of our autism group because he could not control untoward sexual advances towards persons who came to the meeting?

These are all relatively mild cases of autism that I have talked about above. What of the severely autistic persons, those who can't speak, and pound their heads into cement. How will removing this billboard help them?

If neurodiversity is really about human rights and dignity, if it is about helping autistics achieve their full potential and this is the best they can do I believe it is rather pathetic.

Is this a victory for autistic people. I believe not. We have had a quick resolution to the problem of the sign, but now what?

21 comments:

Stephanie said...

I thought the same thing when I read this.

Ironically, one the best definitions of Neurodiversity that I have ever read is from John Best/Foresam:

"Neurodiversity is a concept that began as a positive approach to equalizing treatment for people with disabilities. It was intended to raise consciousness, promote positive self-images and to change public opinion about the way disabled people are viewed. When it started, this included high functioning people who allegedly had autism and Asperger's. It was quickly perverted into a massive propaganda campaign to abuse autistic children by preventing them from being cured."

Of course, John's whole idea about the propaganda of ND is different from my own (and yours) but I still find the definition applies.

Anonymous said...

Not only is Club166 a family doctor, his son was diagnosed with PDD-NOS which he himself says "is a type of Autism Spectrum Disorder". It is not Autism.

When this doctor got the diagnosis, he said,"AT LEASE HE DOESN'T HAVE AUTISM" so he knows that there's a big difference between what his son has and Autistic Disorder.

He wrote on his blog that his son was "affectionate with his family" and had "an explosion of language from 28-36 months".

So WTF does he know about autism or what other parents are dealing with?

~ Watson

Adrianna Joanna said...

Hi, all,

I actually consider myself a moderate member of the neurodiversity movement, and I'm really glad I found this blog, even though I don't necessarily agree with everything on it.

I believe that, if you are an autistic adult, it should be your choice whether or not to be cured or treated (unless your likelihood of hurting yourself or others necessitates that others make that decision for you.) If you are a child, then the adults in your life need to make that choice based on the best available information from all sides.

The idea that autism is not a real disability, and that autistics can do anything nonautistics can do, is preposterous. Even members of the ND community recognize that, often at their peril.

As for the Autistic Bitch From Hell, I have no respect for her. I hadn't like her writing much to begin with, but I finally lost it once she wrote a post that demeaned autistc people who use psychotropic medication as weak-minded pill poppers.

What does she know about debilitating mental illnesses and autism? Does she not know that mental illness is often a comorbidity of autism? Way to stand by the fair treatment of fellow autistics.

Any acknowledgement from autistics that certain things are harder for autistics in general than for nonautistics is treated with the utmost contempt. This is especially prevalent in discussions of marriage and parenting. Yes, parenting and marriage is next to impossible for most autistics, even mildly autistic people. But make that accusation and you are accused of bigotry and eugenics. They are accused of being traitors.

Never mind what happens to a nonautistic person that makes this statement. What does it matter? The truth of a statement is not affected whatsoever by the messenger from whom it came.

I don't agree with the ransom letter campaign or with the idea that autism is a national emergency, but we need to stop pretending that it's nothing but a natural diversity. Some even claim that autism is the next step in human evolution, the creation of a being superior to the neurotypical.

Stephanie said...

Adrianna,

I also consider myself a "moderate" in the Neurodiversity movement. Of course I think that people with autism deserve equal rights and I find nothing wrong with promoting a positive self-image and changing the public's opinion on disability (e.g. removing the "ransom notes" campaign).

I find Neurodiversity to be helpful to very high-functioning successful people with ASDs, but that is about it.

But when these people start saying that "we" don't want a cure, that autism is a difference rather than a disability (although most NDs now admit that it is a disability), telling other people how to raise their children, that it is a "natural" diversity, pretending to speak for everyone and harassing others that disagree with their viewpoints than I find that it is damaging.

I do know that some parents of children with autism support ND but they are typically young children with higher functioning ASDs and so they have yet to discover what happens when they become adults.

I know Casdok's son is profoundly autistic and has been put in a group home, as well as another autistic child of an ND mother. Quite frankly, I don't understand these actions and why they didn't just keep that at home and integrate them into the community rather than send them to group homes.

Isn't this against the whole ND philosophy of "inclusion?"

John Best said...

Neuroinsanity does not have a philosophy of inclusion for autistics. They only want to blur the distinction between autism and asperger's so that aspies gain inclusion while autistics are stepped on by them.

Eric said...

I have recently stumbled upon this blog, and I find the debate over Neurodiversity to be very interesting.

I have to say I agree with the idea of Neurodiversity on some level. But the real question for this blog is not whether it exists, but whether autism falls with its sphere. The belief of the blog is that it does not.

Since I first posted on this site a few weeks ago, I have come to the conclusion that I would never diagnose myself as having aspergers out of respect for those who really do. Before finding this blog, I thought about it. While I have some characteristics, I can function mostly well in society. If anything, I have an anxiety disorder.

Lastly, I don't understand why/how the idea of Neurodiversity would/should stand in the way of research toward finding a way to cure/end autism. Can't they co-exist? An answer to this question would go along way toward helping me understand the issue.



I still think you misunderstand Tyler Cowen's latest book. And his website has nothing to do with autism. He is an economist.

Thank you and good night.

jonathan said...

Eric, Ari Ne'eman ND's leading spokesman has lobbied congress to put on moratorium on all genetic research which is one promising lead of curing autism. ND has constantly stated that they don't want a cure and have campaigned against a cure. The Mottron group, ND's leading scientific group has received half a million dollars, 2.5% of autism speaks' money for research and they have consistently opposed a cure for autism and will spend the money just to do studies showing how smart and gifted autistic people are saying this is why they don't need a cure. Ergo, for these reasons ND and finding a cure for autism can never be mutually exclusive.

I read Tyler Cowen's book, he is either quite confused about autism or intentionally lying (I suspect a combination of both) to say that Michelle Dawson is severely autistic and to compare Sue Rubin (whom I have met) to a zen bhuddist and all of the other assinine things he has said. Eric, it is you, who are terribly confused about his book and it seems you have never even read it based on your statements.

Adrianna Joanna said...

I recall a post that you wrote about "teaching your children young" and how most neurodiversists are younger people, and it got me thinking.

Just because someone is younger does not automatically make them less experienced, and it certainly does not guarantee that they are less intelligent or knowledgeable.

However, there is no disputing that the overwhelming majority of the time, those who are younger simply have not been alive long enough, met enough people and done enough things to know what someone older would know. So the post about "teaching your children young" really resonates with me.

I am about to be 20, and, allegedly, I should be a prime candidate for neurodiversity. I am neruodiversist to some degree, too. However, I have been in special education, I have had a job, and I've been involved in school activities. I lived in a family and in a town where I was seen as normal, even though I was clearly different, and was expected to act normally. They didn't want to pathologize me in any way. They kept my health issues and my special education history a secret.

And I failed miserably to be accepted. People would ask my parents behind my back whether I was retarded, brain injured, etc. It didn't work, and I suffered from it, especially in school and in the workforce.

I am capable of holding down a job, although I've only had one, but it's very difficult. This is why I am seeking a job on the graveyard shift, to be in a quiet environment and to be away from people. It's also much easier to be hired on the graveyard shift because no one wants those jobs.

According to Wrong Planet, a lot of autistics seek jobs on the night shift for similar reasons.

Anyway, I have frequented neurodiversity websites, and what immediately struck me is their obsessive focus on what other people think of them. What does the media think, what does the public think, what does Autism Speaks think, and so on. What happened to having the confidence to accept yourself, i.e. accept yourself without the approval of others?

It is especially frustrating to hear them talk about media portrayals of autistics. It seems that neurodiversity, or any other form of identity politics, for that matter, has this weird fetish with finding reasons to be offended. For example, a movie that, very obviously, is sympathetic to autistic characters gets blacklisted because the autistic characters promote the idea that autistics are dysfunctional.

Well, no s***. Autism is a disability. And more often than not, the dysfunction is minor, certainly not worth a letter-writing campaign.

Anonymous said...

Jonathan,

Neurodiversity is for those whose rose-colored glasses cannot be removed since their autism is equipped with some heavy duty ones with permanent glue.

What I was trying to state on a previous post is that they spend all their energy focusing on the positive side of autistic spectrum disorders to the point you cannot ever see who they really are and what their true beliefs are.

How about that theory?

John Best said...

Jedi Knight,
The lie that you seem to have fallen for is that there are positive aspects to autism.

There aren't.

Every aspect of autism is, by definition, a diminished capacity. For every autistic "genuis", there are millions of other people with high IQ's who are not affected by any sort of autism. If you tested the IQ's of people with advanced degrees of normal versus "autistic" (and diagnosed by age 3) the IQ's of the intelligent normal people would be much higher.

The whole thing is a myth that is just part of the propaganda.

Stephanie said...

"Neurodiversity is for those whose rose-colored glasses cannot be removed"

Wendy Lawson's Rose Colored Lenses:

http://www.jkp.com/media/email/2008/wendy-lawson.jpg

So it IS true that some NDs wear rose colored lenses!

Anonymous said...

Adrianna Joanna said...

"Well, no s***. Autism is a disability. And more often than not, the dysfunction is minor, certainly not worth a letter-writing campaign."

Both Autism and Asperger's Syndrome are pervasive disorders. If the dysfunction is minor, then it's not Autism, or Aspergers.

~ Watson

Jake Crosby said...

Of all the issues I disagree with the NDs on, I have to agree with them on this. Yes, the billboard did not flat out say children with ASDs were "kidnap victims," but it certainly implied that. There are better ways to spread awareness about the high autism prevalence than distribute information that causes us to be misunderstood instead of helped.

Adrianna Joanna said...

"Both Autism and Asperger's Syndrome are pervasive disorders. If the dysfunction is minor, then it's not Autism, or Aspergers."

I understand completely. I am referring to specific dysfunctions in mild versions of autism/AS. They are not stereotypically autistic, as stereotypically autistic characteristics are guarantees to tweak off the NDs. But the NDs are still up in arms about those portrayals. They don't want it acknowledged as a disability period, and that's unfortunate.

John Best said...

Jake,
Don't you have Asperger's, not autism?
That means the billboard had nothing to do with you. It didn't cause you to be misunderstood at all.
Kidnapped is an accurate description for what happened to normal children who were turned into freaking zombies by vaccines. You're no better than the worst neuroinsane psychopath when you start calling yourself autistic and misrepresenting the horror that is faced by people with autism. It also shows you have zero understanding of how Neuroinsanity slings their propaganda.
Do you think you're doing something that's countering ND? You just joined them yourself. Wake up!

Jake Crosby said...

Mr. Best,

The billboard used the 1 in 150 number which refers to children with all ASDs, including Asperger Syndrome, not just autism. So it is including people like myself in its list of implied kidnap victims.

Such blanket statements only cause stigmatization for those of us with Aspergers. From this perspective, I do understand your anger at the NDs for also making blanket statements that have caused trivialization for the severity of autism your son has. So I am universally opposed to such statements about people with ASDs.

Although on I often get thanked on Age of Autism by parents of more severe children, often who are non-verbal, for "speaking" for them, that is not my intent at all. I do not intend to speak for anyone other than myself.

John Best said...

Jake,
The solution to resolving the alleged stigmitization that you oppose does not lie in obfuscating the distinction that exists between "autism" and "Asperger's" by taking part in feigned opposition to the truth.

As for you and all Asperger's victims, it does not advance your cause to play games of sophistry involving the statistics. When you enable the propaganda from ND to advance by supporting their contention that said billboard is some sort of slur against people with "autism", you are engaging in their technique of warping the truth of the matter yourself.

While said billboard may indeed be offensive to people with "Asperger's", allowing yourself to be sucked into employing the disingenuous rhetoric of ND by comingling the two terms involved here does not advance the truth about the condition that afflicts you.

It should behoove you to make a point of embracing that distinction rather than obfuscating it. When you can advance the public's perception of the differences inherent to Asperger's sufferers from the norm, then you can gain legitimate acceptance. To allow an uneducated public to believe you have "autism", not "Asperger's" conjures up images of feces smearing, "vegetables" like my son used to be.

Is that what you want people to think of you when you include yourself as "autistic" on any level? ND is desperately trying to obliterate the distinction between the terms to confuse the public to the detriment of everyone, anywhere on the spectrum.

Please take the time to understand the complete intent and and affect of the propaganda. Advance the cause of people with Asperger's as a distinct entity, completely seperate from the 'vegetables' who suffer the abject horror of "autism".

John Best said...

Roger,
Thimerosal was first used in vaccines in 1931.
There are different opinions about the causes of autism from the people who comment here but it seems there is agreement that Neuroinsanity is a bunch of sadists who are running a hate campaign against all autistic people. So, if we agree on that much, we're allies.

navywifeandmom said...

Well, beings that I am a "biomed parent" and my daughter also gets ABA therapy, I obviously do not agree with everything that Jonathan writes.

Except of course what he says about ND. I find his assessments and arguments against them to be spot on and pretty much everything I have thought before about the movement as a whole, that's why I read here.

I have also found that even if Jonathan disagrees with a therapy I am trying with my own child he is never an ass when disagreeing like many of the NDers can certainly be.

silk said...

you speak the truth. it isn't right or wrong, it just is, like physics and the law of gravity. Whether you believe in it or not, it's still true. It reminds me of an eternity ago when my mother joined a metaphysical church because it turned her schizophrenia into a psychic gift. She still couldn't take care of herself or her children, no matter what she called it. My son would probably be willing to give up a limb for a cure. I think he's spectacular, and I couldn't possibly love him anymore, but I wish there was more I could do to relieve his suffering. Amazing how you don't find a lot of lower functioning people at the ND meetings.

Anonymous said...

"Jedi Knight,
The lie that you seem to have fallen for is that there are positive aspects to autism.

There aren't."


Foresam,

Of course I realize there aren't any positive aspects. I've got a language impairment that causes me to live like a wimpy changling (depending on what level I'm set to during the speech therapy I've been having so I can communicate and socialize more effectively, only I hate the way the therapist handles the entire process because I feel like I'm more capable than how I appear to come across to her). Just about every autistic I've ever come across (NTs included) has been able to accomplish what I've always dreamed of, only my SLP (speech-language impairment) holds me back. I have a lot in my mind that I've repressed because it seems like no one knows how to help someone like me or anyone with other SLI's because there needs to be more research and we have defective brains anyway. Not that the non-SLI autistics are, therefore, not disabled, but more cognitively impaired when it comes to non-verbal language, pragmatics, executive functioning skills, and some degree of lower receptive and/or expressive language in social-communication than average, but they generally don't have problems to the point where they grow up to be like "melvins" (i.e.-like the South Park character Leopold "Butters" Stotch). Just read the quotes from this site to get an example of what this character is like:

http://www.imdb.com/character/ch0003557/quotes

Now, there are plenty of NTs I could have bonded with, only my problems have always made it hard for me to do so. With the common autistic symptoms most high-functioning autistics have, they can at least live a productive life compared to your son, only in my case I come across like someone who's not seriously impaired to other people in public, so I get viewed as someone who's insecure and lacks the confidence to even try anything new while others may interpret me as someone who is socially impaired, yet do not see that I'm not as bad as they believe I am. My communication and behavior toward others pretty much depend on my comfort level....whether it's on the phone, Internet, or in other situations with certain people.

Am I aware autistics with high IQs are intelligent in spite of their autism? Yes. I should especially know this one because my parents are attorneys and my younger brother is quite intelligent, meaning I could have been at their level if I wasn't disabled. My IQ tests were always inconsistant, but guess what? I earned my bachelor's degree in criminal justice last spring and my speech therapist can tell my intelligence is at the average-to-above average range just from interacting with me! In fact a speech pathologist could determine where someone would fall on the intelligence scale for just about anybody!

Am I aware that autistics who are highly skilled in certain areas are good at what they do because of their autism? No, because I'm smart enough to know they'd do even better if they were not disabled.

I'm also learning a lot of the challenges autistics on the spectrum face in reality from my speech pathologist. At a young age I viewed things the same way ND views disabled people (I still get frustrated when something doesn't go my way because I feel like there's stuff NTs like my parents miss but have to remind myself to be rational about it, plus I end up learning more and unpeeling more layers of the onion), but as an adult I'm able to rationalize these things unlike many of the loonies from Neurodiversity. Then again, maybe some of the ND proponents share some of my issues as well as their own, or they have issues I do not share, yet they don't share any of mine but are in denial and/or don't know how to help themselves.