Friday, November 13, 2009

autistics bullied: where are ASAN and Neurodiversity?

I see that there is a a new article out that discusses one of the problems of growing up autistic, being bullied. Bullying was a real problem for me as a child. I think most children with a developmental disability will attest to the fact that they had to endure incredible bullying. Of course very little is done about bullying and no one wants to include bullying as a diagnostic category in the DSM as they do autism. There are no segregated special ed schools for bullies and no federal mandate that bullies deserve a free and appropriate education away from handicapped children who are bullied.

Though I have had my differences with Michelle Dawson in the past, one time she did write something about bullying on her TMOB comment board which I agreed with. I wrote an article on my website giving Dawson's ideas a shout out and giving my own take on the matter.

One young angry member of neurodiversity has argued in the past that a cure for autism should not be found because NT children are such bullies and these are the type of persons who should not be emulated.

Other than these comments as far as I know, ASAN nor any other member of the ND movement has said anything about bullies or complained about bullying. This is surprising in light of the fact that ND proponents have consistently claimed that their movement is about human rights of persons with autism and similar disabilities. I know that they don't consider the right to treatment or the right not to be disabled a human right. However, one wonders why not being bullied is apparently not considered a human right by neurodiversity in general and ASAN in particular.

I see that ASAN spends the bulk of their time protesting autism speaks, claiming that they are only in existence to get rid of autistic persons, to insult them and urging boycotts of autism speaks and organizations such as toys 'r' us or Lindt chocolates who have supported AS in the past. Yet they apparently have no problem with Laurent Mottron's acceptance of half a million bucks from this organization.

Before I read the recent article about bullying, I was sort of curious why they spent so much time on autism speaks and apparently never organized demonstrations against the Judge Rottenberg center and similar organizations. For anyone not in the know, the Judge Rottenberg Center (formerly Behavior Research Institute) is a place where children are physically hit and electric shocked. As far as I know ASAN has never organized a demonstration or protest outside of the JRC the way they have at autism speaks walks. Apparently they don't feel that not being physically abused by these people is one of the human rights neurodiversity crusades for.

Now, it seems strange that Ari Ne'eman and his cronies have never, as far as I know, said one word against bullying. They have never done anything or attempted to address the problem of bullying, I wonder why.

Perhaps one reason is that a good number of members of the ND movement are bullies themselves. They have been abusive to me in the past when my only offense was saying I hate my autism and wish there could be a cure or scientific treatment. They have called me quisling, house autistic, sworn at me and insulted my parents. It is a good bet that they bully other people and parents also. I realize the likely explanation for this is that many of them were bullied themselves as children due to having autism or perhaps for other reasons. They ended up emulating the behaviors of those who victimized them.

Perhaps these are the reasons that ASAN and neurodiversity have been silent on the subject of bullying.

25 comments:

Stephanie Lynn Keil said...

It is rather annoying to get constantly called a "troll" or "enemy" when you want to offer a different opinion.

I think many of them have feelings of superiority: they are "autistic," disabled so to speak, and yet they still have managed to do all the great and wonderful things they have done merely through their own hard work.

Being very mildly affected and barely disabled has nothing to do with it: they are brilliant and work hard and have the right to champion for other people with autism. Nevermind that many, if not most, people with autism are much more disabled than them and will never earn a PhD or get married and have children. Nevermind that many people with autism have learning disabilities and are intellectually disabled.

It seems that to be uneducated is a great embarrassment to ASAN: they wouldn't want to represent poor and uneducated people even though in reality many people with autism are poor and uneducated.

I know Ari Ne'eman is smart enough to know that Facilitated Communication isn't real but perhaps he doesn't want to admit that then he will be representing people who are severely intellectually disabled, that all of those people who used FC and earned college degrees don't really exist.

Stephanie Lynn Keil said...

I remember this post on Change.org's now defunct Autism Blog:

<"a href="http://autism.change.org/blog/view/that_which_goes_unseen">

The argument is: just because I can drive, hold a job, have friends, earn an advanced degree, etc. doesn't mean I'm not really disabled. I mean, look at my apartment (since they live independently): it's really messy and I can't clean it myself. Oh, and sometimes I forget to eat. Once I got very thin because I forgot to eat but then my friends helped me through this ordeal. I'm so disabled that I forget to eat sometimes.

Which would you rather have: a job, a car, an apartment, friends and sometimes forget to eat and live in a messy apartment or live in an institution, self-mutilate, have trouble communicating but have shelter and food?

Jake Crosby said...

Perhaps it is because many of them are bullies themselves and don't want to sound hypocritical. A good in site into their character is as simple as trying to engage any of them in a debate at the Autism Hub or on "Science"Blogs.

It's so ironic how John Best is banned from all these places, yet you'd think if they could dish it out that they could equally handle taking it as well. Apparently not.

Kent Adams said...

Before I read the recent article about bullying, I was sort of curious why they spent so much time on autism speaks and apparently never organized demonstrations against the Judge Rottenberg center and similar organizations. For anyone not in the know, the Judge Rottenberg Center (formerly Behavior Research Institute) is a place where children are physically hit and electric shocked. As far as I know ASAN has never organized a demonstration or protest outside of the JRC the way they have at autism speaks walks. Apparently they don't feel that not being physically abused by these people is one of the human rights neurodiversity crusades for.

Interesting that you should ask this because I have spent the last several months on ASAN's Yahoo board arguing that the AS walks are silly and stupid when they could be protesting against the JRC and I've made the argument that they don't really give a shit about kids at JRC. I still stick by that characterization. As I told them, its rather easy to protest against parents of kids like Jamey Gilbert (see Doherty's blog) than a dungeon master like Israel. Fact is, they don't give a rat's ass. ASAN has members in Boston, but you won't find them protesting JRC anytime soon.

I have in fact gone to JRC myself and I'm in the middle of creating a documentary demonstrating the apathy of both the townsfolks, interviews with former students and staff and I will be addressing the apathy of ND to the JRC.

You can see some clips of interviews of Canton Mass. residents here on my last visit to JRC. Not a single person from ASAN's message board expressed any interest in helping me with this project. That's convinced me this is nothing but a shiney aspie/self diagnosed movement.

http://www.youtube.com/watch_private?v=Jud06ORuHIU&sharing_token=X4vBZuYpujY9HbzHCYxgEQ==

kent adams said...

I posted your question on ASAN's Yahoo board about JRC. I also noticed that I'm on moderation there.

Here is the video again in case some can't copy and paste the first link:

http://tiny.cc/F9gBm

I've argued for your inclusion there, though I doubt you would be interested in being a member on that board, I just don't like exclusion for anyone.

Stephanie Lynn Keil said...

I also think these Autism Speaks walks are useless. How many show up to support ND? ~15? And how many for Autism Speaks? ~6,000? Do they actually think that they are making any impact in the lives of people with autism with this nonsense?

I left this message at an ASAN blog about a protest about Autism Speaks; I didn't know anything about the JRC stuff but I guess this message can include that:

"Not a single Autistic person is on Autism Speaks' Board of Directors or in their leadership."

There are no neurotypical parents of severely autistic children on the Board of Directors of ASAN. Why don't you ask Harold Doherty to be on the board of directors of ASAN? This is what your request about Autism Speaks equates to. ASAN and Autism Speaks have completely different goals so why would they want a very high-functioning Asperger's person who does not want a cure for autism on their board of directors? Frankly, I think you are wasting your time with this Autism Speaks stuff, but that is just my opinion. You should just say "ASAN does speak for me!" or whatever. I don't think you are going to infiltrate Autism Speaks very well.

I don't support Autism Speaks in any way but I don't think you are really helping autistic people with these protests. I honestly think it is a waste of time and that you should spend your time doing something more productive. There are plenty of autistic people (I am one of them) who have no friends and not much joy in their lives. Organize an event for them: autistic fun day (or whatever!) Then, if you so desire, tell them about your goals and ASAN. I think if you can prove you are positive people and parents see that their autistic children can be happy the will be inclined to believe you more. You (ASAN) make many people, especially parents of severely autistic children, angry. Perhaps prove that severely autistic children can be happy as they are and they will start to believe you. Your protests really do nothing, except make those who already agree with you feel good about what they have done.

But, of course, I don't know much about all of this. This is just my opinion."

Kent adams said...

Yep, I'm no longer allowed to post anything on ASAN's board unless Ari Ne'eman approves it. Oh well, I was unwanted by the Hub, my opinions are unwanted by ASAN and I guess I'm back to Youtube. They didn't allow your question on ASAN's board either Jonathan. I guess there is a place that is about us without us and its ASAN, Autcom, the Hub, and Autreat. I own a website called www.nothingaboutuswithoutus.com Perhaps we should make our own Hub because that site is an aggregator like the Hub, I've just never really fooled around and done anything with it.

Ari Ne'eman said...

Actually, we helped drive legislation in Maryland to help curb bullying. In addition, we've worked with the New Jersey Department of Education to try and help students with disabilities learn self-advocacy skills that will help them fend off bullies and educate their schools to discourage their emergence. In addition, I've communicated with the new school safety folks at the Department of Education and we're encouraging them to start addressing the issue through federal technical assistance on how to curb the harrassment and bullying students, including those on the spectrum face in schools. Bullying is something we've done a lot of work on.

Roger Kulp said...

Well,yeah,of course we do.This seems to be a week of "thank you captain obvious"studies about autism.First the handwriting studies,then the one about mothers of autistic children having stress similar to combat soldiers,now this.

Is wanting to get back at those who bullied them as children,a reason why so many of the higher functioning types,like ABFH,turn into bullies themselves?

Stephanie Lynn Keil said...

"we've worked with the New Jersey Department of Education to try and help students with disabilities learn self-advocacy skills that will help them fend off bullies"

I wonder how successful this was. As a person with HFA with horrible social and communication skills I can say that so far self-advocacy hasn't helped me too much. Besides, I can't work so I get SSI and qualify for Medicaid which means it takes at least five years to get anything done anyway.

@Kent adams: Ha. Someone should start another "autism" hub since the Autism Hub often excludes people with actual diagnoses.

kent Adams said...

Jonathan,

Let me continue with a thought here. I revealed to ASAN that I was working on a documentary about the JRC. One of the members there actually defended the man responsible for the GED IV and said he was a great behaviorist. Even after I revealed to him that his favorite and ethical behaviorist served on the board of JRC and was responsible for the invention of the GED, he refused to condemn the man. One would think that bullying and death would be a concern of ASAN, but in fact I've found the opposite to be true. I don't think that the premise that: "these folks are were bullied and are now just bullying others as they were bullied" is actually true. I don't think a large number of these folks were bullied or suffered at all. If they were, wouldn't they want to promote a documentary on the JRC? Yet, very few even clicked on the video snippet to the documentary I'm working on and fewer still even commented on it or contacted me about it. They don't seem interested. In fact, Ari Ne'eman doesn't support protesting against the JRC. He has said this on the ASAN board. One ASAN member stated when shown the clips of "recess" for the JRC students, which amounts to time in the employee parking lot behind JRC's main building and behind a fence stretching I estimate 10 x 75, as no big deal. He stated that this was nothing. In fact, there are nearly a 100 IEPs violated at JRC by this type of recess. However, he thought nothing of it and no one on ASAN's message board even thought to contradict him.

Ari Ne'eman in fact didn't even want or desire to look at the footage of torture I captured at one of JRC's group homes. I guess he couldn't be bothered by it. It's not part of the shiney aspie agenda I suppose. What other reason would he have to refuse to look at the abuse?

JediKnight2 said...

Although I agree plenty of disabled people get bullied, regardless of the type of disability is, I believe many autistics, such as myself, are insecure and adopt the role of being or feeling like "The Lost Child" and/or "The Problem Child" based on the expectations the autistic person has to fulfill with the lack of knowledge family members and educators have on first-hand experience.

For example, after watching Temple Grandin speak on The View on CSPAN2
yesterday (my dad tape-recorded it for the second time last Saturday since he only taped part of it the week before), she pointed out how she was given a rule where she could only ask one question per class- the same rule my fourth grade teacher gave me whenever I'd ask questions for trying to learn and understand, except I was eventually given the opportunity to ask five questions. My teacher came up with this idea after she and the rest of my class got exasperated from me asking questions daily.

The problem was that my IEP had my diagnosis classified as an "autistic student", so rather than knowing my problems of "perseverating" were due to my receptive language deficits (and expressive language, short-term working memory and OCD/anxiety symptoms) and trying to find a way to work things out for me and the whole class, this rule would be drilled into me from the middle of the school year just to accomodate the rest of the class from having to be interupted by me and to attempt to teach me social skills. It seemed as if no one ever thought of the negative consequences of this system. If I asked the teacher to repeat something she had just said or asked, "What?" for not being sure what she said, I'd already lose one question out of five for the day.....even if other classmates sitting by me asked the same exact thing! "I should have had them speak for me," I'd remark to myself. Then the teacher would tell me, "Now you just lost another question!"

JediKnight2 said...

I felt the way I was being treated was rediculous. I remember observing my classmates to see how many questions they asked, and I swear I counted like 10 questions for a girl once, and she did not get into trouble. On the other hand, if I asked over 5 questions I'd lose some conduct points. If you lost one conduct point, you'd go from an A to a B for the day on all classwork. The more conduct points lost, the lower your grade would be for the day. In my case, I was more vulnerable for losing points and receiving an "F" for the day despite having to put in double the time to complete my busywork while the rest of my classmates would complete their work like it was a piece of cake and socialize. Heck, I started losing points for unintentionally arguing with the teacher, like if she took away a point for my conduct over my classmates picking on me to get a reaction out of me, I'd also lose a question for the day as if that wasn't enough, even if I was able to catch myself off guard and remember what I was just told which caused me to regret asking a question.

Now back to the point.....the speech therapy I had when I was little felt just as equivalent to my 4th grade experience. With the lack of knowledge of my receptive language being off all those years and the fact my expressive language is only more of an issue when I'm having conversations with neurotypicals and certain people who talk too much or quickly where abstract concepts are involved. The more abstract and emotional input required from me, the more time I need to speak. The therapy I'm in now is to make improvement within these areas, yet it's not perfect as there's no cure and more techniques that need to be studied and adopted by speech pathologists to use in therapy for their clients. Since I still have a long way to go from where I am now anyway (the therapy seems to work like I'm taking two steps forward and one step back), I feel like I'm not a complete person, and I end up having to deal with my family without being in control of my own value system.

I believe the problems many autistics from Neurodiversity have are related to mine, so when they grow/grew up with their parents, they probably don't/didn't feel like a complete person, get accidently taken advantage of by their parents (and siblings on purpose when they were young), and feel "stuck" like there's nothing to do.

I have a good feeling that many autistics grow up only half-listening to their parents from the days they were picked up by their parents after school and had to listen to how their days at work were while the autistic kids zoned out and pretended to listen to them. Even when they're a bit younger, things likely had to be repeated to them until they kept those facts or "minor details" in their memories for some parents aren't great role models for learning how to live independently, knowing how to trust what you're told and not be naive or gullible, and other facts of life that many kids pick up on their own.

Despite the fact some autistics do/have get/been bullied, I believe a huge factor autistics experience contributes to what I described in the three paragraphs above.

Foresam said...

Who thinks Ari Ne'eman will address my concerns?

Kids who can't talk, read or write are bullied by ASAN every day. ASAN spreads propaganda claiming that those kids should not be cured to give them those abilities.

I think JB Handley probably told Ne'eman to protest Autism Speaks so the protest would be for the wrong reason. Autism Speaks lies about the existence of a cure for autism. You'd think Handley would tell Jenny McCarthy to protest AS because of that but, instead, people who support Handley also support Ne'eman's bogus protests.

Ne'eman has no business protesting AS because he's not autistic. He only has Asperger's, and that's questionable. He protests AS for the wrong reason so that anyone who protests AS for the right reason will be thought of as just another lunatic like Ne'eman and his crew of imbeciles.

Foresam said...

Kent,
Can you get me into ASAN's group? Do you think any of them would have a discussion with me without just calling me a troll?
I now have a blog honoring Ari at arineeman.blogspot.com .

If you could find enough people to protest JRC, I'd join you. I agree the shocks should stop too. But what's the outcome for those kids?

Is anyone who advocates shutting them down also in favor of curing them? Will they just be drugged heavily so some group home owner can manage their behavior with anti-psychotics while the kids wear a hockey helmet 24 hours a day to try to protect them?

Do you think Israel could train Ne'eman to tell the truth?

RR said...

"Kent,
Can you get me into ASAN's group? Do you think any of them would have a discussion with me without just calling me a troll?"

John, perhaps if you diagnosed your self with autism, they will let you in.

Anonymous said...

Dr Fuckwit Fil has already diagnosed John with ASD, does that qualify ?


cyberman

Stephanie Lynn Keil said...

Finally, a productive advocacy group, NOEWAIT.

I recommend everyone go visit the site, print out the documents and mail them to your congress people. I am definitely doing this. Today. I'm on the waiting list.

Do something productive.

JediKnight2 said...

Thanks for posting the NOEWAIT group, Stephanie. :)

I'm interested but I have a question:

Do you know if this applies for those who are in need of health insurance, but not medicare/medicaid?

Stephanie Lynn Keil said...

@JediKnight2: I think it applies to everyone on a waiting list. There are many people who make too much money for Medicaid but can't afford any kind of medical care so they are stuck in a weird limbo and also put on waiting lists to qualify for special care.

Anonymous said...

I have heard nothing about the latest Autism Speaks protest. Anyone hear anything at all? Couldn't find anything, despite the hype. At least, not yet...

Anonymous said...

Found on Twitter:

"Got word about ASAN's NYC Anti-Autism Speaks Protest- 15 protesters, but sadly no media coverage this time."

JediKnight2 said...

@Stephanie:

I just researched what medicaid entails since I was confused about the difference between medicaid and medicare. So they're basically the same thing except medicaid is more for welfare and not provided completely by the federal government, and medicare is mainly for the elderly with health problems provided by the federal government even though they both cover health insurance?

In other words, you're saying that many people who should be entitled to medicaid (or even medicare) end up on waiting lists to receive medical care insurance because the government feels their income is at least decent, so therefore, they
get placed on a waiting list so the government can keep track of which individuals should be next in line to be entitled to it?

Stephanie Lynn Keil said...

@JediKnight: That's pretty much it.

Roger Kulp said...

Once again we need to ask
"Where are ASAN and neurodiversity?"

http://www.nytimes.com/2009/11/24/nyregion/24runaway.html?emc=eta1