Tuesday, May 26, 2009

Cross Purposes: A Composite Conversation

Bev: The widespread abuse of autistic people must be stopped.

Someone Else: Cure the autism. That will end all the problems.

Bev: There is no “cure” for autism. Autistic people need and deserve to be fully included in society.

S.E.: You are not autistic.

Bev: I am autistic, but even if I were not, there are still autistic people who need support and accommodations that they are not getting, and who deserve lives free of abuse and exclusion.

S.E.: Do you think that maybe vaccines are responsible for the increase in autism?

Bev: No. I think that the Judge Rotenberg Center needs to be closed immediately.

S.E.: Why do you reject all treatments for autism?

Bev: I reject the idea that “autism” itself is something that can (or should) be eliminated. I reject treatments that are unethical, inhumane, or lacking in evidence, whatever they claim to treat. I support OT, speech therapy, physical therapy, etc. where appropriate. I support treatment of depression, anxiety, sleep disorders and other medical conditions whether these occur in autistic or non-autistic people. I support special diets, supervised by real physicians, for people who have diagnosed food allergies.

S.E.: So you are against a cure!

Bev: There is no “cure” for autism. I am against the marketing of quackery. Unproven treatments like HBOT, chelation, Lupron, etc. do not cure autism and can harm autistic people (and also their families who go into debt to pay for these scams). What I am for is helping autistic people learn skills they need in ways that respect their unique learning styles.

S.E.: So, according to you, all research into autism should be stopped!

Bev: I would like to see some of the money that is spent researching possible causes of autism be put into developing alternate means of communication for those who need it. I’d like to see AAC made available to all who might benefit. I'd like to see some of the money raised in the name of "Autism Awareness" go into training employers, teachers, first responders, police, doctors and others who will find themselves in positions of power, however momentarily, over autistic people. I’d like to see major autism groups actually listening to the needs of autistic people rather than trying to prevent more autistic people being born.

But back to what I was saying…autistic people are routinely abused in institutions. Judge Rotenberg Center is not the only one, but closing it down would be a good place to start.

S.E.: People bang their heads because they are autistic. They need to be institutionalized.

Bev.: I have a history of hitting myself in the head. I can tell you that every single time I have done this, it was because I lacked a better way of saying what I needed to say.

S.E.: This conversation is not about people like you.

Bev: I know that. I am aware. I am more and more aware of this every day.


  1. I hope Neurodiversity lives up to its promises and helps people with HFA/AS. It is a shame that so many people with HFA/AS are left out in the cold because I know if many of them ever got appropriate treatment and services they will be successful. I have HFA/AS and am STILL waiting for someone competent to help me...it's been years...

    But, I still think you miss the point about people who are profoundly LFA, like my cousin. I also think Neurodiversity stereotypes institutions. It's not fair to say that EVERY institution is horrible, just like it isn't fair to say that every autistic person is retarded or completely incapable.

    I've been in a bad institution and a good one. The bad one was your sterotypical institution, nothing but a warehouse. The good one actually provided treatment and comfort: it had a school on site, a kitchen in each ward, a living room, nice staff and we often had outings.

    There is also a nice one where I live: they recently hosted the Special Olympics.

    I don't see why these places are horrible are should be shut down. They provide wonderful services to people.

  2. Excellent post and well stated Bev!

    If one categorization method isn't inclusive enough to exclude the entire group of autistics from speaking up, a new categorization or several more are added to ensure that everyone gets excluded from it....one way or another.

    If no one is seen to be the appropriate spokesperson for ending abuse, those with the power to so will be self-appointed to claim that either there are no abuse problems or that no one qualified (because they disqualified them)is claiming that there is a problem.

  3. Well said!
    From a mum whos son does bang his head.

  4. well done!-from a mom who worries about the world in which her kids will someday be making their way in..

  5. Great post.

    Hitting myself is often a reflexive reaction for me. Most often it is out of extreme frustration that I have yet to develop alternate method to deal with, but sometimes it happens because I need to express something I'm having a hard time expressing and need to do it quickly... instead of managing to say what I need to say I end up hitting myself.

  6. Boy that Someone Else character sure has communication problems. Can't stay on topic or follow a line of reasoning worth a lick. Can't get beyond their own opinions to listen to others.

    What kind of disorder does Someone Else have?

  7. Phil,
    I'm not sure what it's called, but I'm afraid it has become an epidemic!

  8. Very well said Stephanie Lynn.

    Thank you for acknowledging the realities faced by many lower functioning persons with autism disorders and pointing out the value of modern, appropriate care for those who need them. Your voice and that of Jake Crosby and Jonathan Mitchell are much needed in "autism" discussions.

  9. Judge Rotenberg Center uses skin shock to control the behavior of autistic students (inmates). Multiple shocks have been administered for such infractions as cursing and standing when told to sit. This is abusive. The Judge Rotenberg Center needs to be closed. There are many other institutions that abuse autistic people, and also need to be closed. This is only one issue among many relevant to the discussion of the mistreatment of autistic people.

  10. Great post Bev, a real insight into how difficult it is to have a reasonable discussion with people who think like your someone else.

  11. And here's one thing about the "treatment" at Judge Rotenberg: The staff members have been given basically free reign to zap the kids whenever they get a hankerin' for it, as long as it's "documented". You don't think that staff members will zap a kid just because s/he doesn't like the look of the kid? Because the kid is, say, fidgeting or humming or *looking* in a certain direction or simply *appearing* to not be paying attention? These things can be "documented" as "behaviors" that are presumed undesireable, but the majority of them are absolutely harmless. Shocking a child because his mere *being* gets on your nerves is seriously messed up. And I suspect the majority of what drives people to insist that certain *kinds* of people ought to be institutionalized does not stem from a desire to "help"; it stems from revulsion and a desire to get them out of the public eye. It is by the same motivation that autistic people are abused, ignored, marginalized, and ridiculed, and that causes even autistic people to describe themselves as "HFA/AS" instead of simply autistic. Mustn't associate ourselves with *those* people!

    Multiple shocks, pinches, etc. have also been "administered" at JRC like so:

    "In recent incident, a resident was awakened and shocked 77 times:

    "The school and its founder Dr. Israel, of course, claim that this was 'an isolated, unprecedented' incident. Just as it claimed back in 1981 when it was reported that 'Israel had pinched the feet of Christopher Hirsch, an autistic 12-year-old, at least 24 times in 30 minutes, while the boy screamed and cried. This was a punishment for soiling his pants.' Or when 'another student, 14-year-old Danny Aswad, died while strapped facedown to his bed.' Or when 'Vincent Milletich, an autistic 22-year-old, suffered a seizure and died after he was put in restraints and forced to wear a white-noise helmet.' Or when 19-year-old Linda Cornelison, who had the mental capacity of a toddler, refused to eat and was punished by staffers: 'Between 3:52 p.m. and 8 p.m., staffers punished her with 13 spatula spankings, 29 finger pinches, 14 muscle squeezes, and 5 forced inhalings of ammonia. It turned out that Linda had a perforated stomach. She died on the operating table at 1:45 a.m.'.

    Awwww, poor institutions. Always being stereotyped.

    You think JRC is the only institution where this kind of thing happens? JRC is simply one of the few that gets away with *advertising* it. And it's precisely *why* it's so successful. Parents have convinced themselves that autism is such cause for desperation that they *welcome* a place that advocates extreme practices.

  12. Bev, your characterization of those who debate you was loaded with straw man nonsense. I guess you can't reasonably rebut the majority of your opponents who actually have decent arguments. Enumerating all of the shortcomings of the things that are called treatments nowadays doesn't excuse you from being against curative treatments. There is no indication that "alternative communication" would work for many autistics who lack language skills.

  13. Often, when I have begun a discussion of something important to me, like the basic human rights of people, whether disabled or not, other people have tried to change the subject to something they prefer to discuss such as cures or functioning labels or how I am not a reasonable person. This is the primary topic of this post.

    The second topic is that autistic people continue to be routinely abused in a variety of situations. One example is the JRC, where students are shocked to control their "behaviors."

  14. I wonder how often other people try to change the subject from basic human rights to things like cure. I'd be really surprised if that many individuals are that irrational. I also wonder who involved in these issues are against human rights and favor the JRC.

  15. Their rationale is simple, lurker. Autistic people needing services or being abused = problem. Since non-autistic people usually don't need these same services or aren't as vulnerable to the same sorts of abuse (and since bullies won't go away), problem = autism. Solution = eliminate autism. Or the appearance of autism. At any cost. When folks are convinced that the Most Important Thing is to get rid of the autism, they can be easily convinced that extreme measures are justified. I don't doubt at all that when someone's got it in their head that the problem is -- duh -- autism, they find the suggestion that we do anything but get rid of autism to be absurd. I don't doubt at all that if the conversation starts out as "We need to do something for these autistic kids" they'll quickly turn it to "Uh, how about just get rid of the autism, stupid?"

    (And barring that, get it out of our sight.)

    I think a lot of those responses are motivated by guilt. "But I'm a parent of an autistic kid/know a parent of an autistic kid, and the kid's living in an institution/getting unproven treatment/etc. I did my research and was told this was the best thing for him! Now you come along and try to make me feel bad for doing it." Certainly, certainly it can seem to those parents/wellwishers that advocates are militant naysayers who offer no real solutions. It seems, though, that the problem we should be targeting is the fact that there are so many quacks and bullies out there who prey on people with the pre-existing notion that because autism is so horrible, we should be doing something -- ANYTHING -- to make it go away. Even if it's been shown time and again that it can't go away, any more simply than, say, homosexuality can (or should) go away. It's an EPIDEMIC, for God's sake! Unfortunately, the root of that notion is the initial prejudice and fear -- revulsion, even -- that occurs in the majority of adults upon seeing someone different, someone with whom there is something "wrong". Popular culture, as well as family and friends and acquaintances, take that root and run with it. "There is something wrong with your kid. Do something. Anything." And when a parent is subjecting their kid to something which may be harmful -- and I presume the parent suspects that it may be harmful and has his/her own doubts already, but has convinced him/herself that it must be done because it is the only way to kill the autism -- (s)he can understandably get quite touchy when someone -- someone who is ostensibly "not like" their child -- comes along and affirms their fears, however small, that it's wrong.

    Lol @ word verification: "subtly".

  16. evonne, I wonder what they're supposed to think of your sincerity in speaking against unproven treatments and institutions when your side doesn't even respect the concept of cure. How can they be helped to shun unproven treatments when your side is trying to prevent proven treatments from being researched and devised?

    You don't have a lot of solutions to some of the problematic behaviors that make it difficult to keep some autistics out of institutions. And it's not like a lot of parents who want cure aren't trying to get services for their children and keep them out of institutions in the short run. I think if you confined your roles to advocating for the forms of help you endorse, and not demonizing cure, that there wouldn't be a backlash against you for talking about your advocating of services and against abuse and unproven therapies.

  17. "your side is trying to prevent proven treatments from being researched and devised"

    Ah. I see.

    The problem is that "proven treatments" aren't "proven" *before* they are researched and devised.

    If you've got "issues" with neurodiversity, try talking to science.


    As for this:

    "You don't have a lot of solutions to some of the problematic behaviors that make it difficult to keep some autistics out of institutions. And it's not like a lot of parents who want cure aren't trying to get services for their children and keep them out of institutions in the short run."

    I believe you lifted those ideas from my previous comment. I believe I just *said* that.

  18. Proven and effective treatments won't ever be around if nobody works to make them in the first place. And there's no evidence that great treatments can't be made.
    "If you've got "issues" with neurodiversity, try talking to science." What does one have to do with the other?
    "I believe I just *said* that." I don't think you did.

  19. The list of 'cures' for autism is pretty endless.

    Whatever happened to that genetic thing? It was big news for awhile, they had found the gene for autism... then... nothing.

    In the end, always nothing.

  20. "What does one have to do with the other?"

    Ah. I see.

  21. To me, the issue of curing autism is separate from the issue of human rights for autistics. Here is how I see it.
    Curing autism: If we had a safe, effective treatment capable of making an autistic person non-autistic, should it be used? And as a corralory, should we be trying to develop such a treatment?
    Human rights for autistics: Given that we have no safe, effective cure for autism, autistic people have to find good lives as autistic people, regardless of whether we want to be cured or not. So how can we best ensure that autistic people can live good lives in the absence of a cure?


Squawk at me.
Need to add an image?
Use this code [img]IMAGE-URL-HERE[/img]