Whose Planet Is It Anyway?

Wednesday, August 16, 2006

Identifying the Problem

A behavior analyst got my goat.



I was reading another ugly, stereotyped article about autism recently. (Although I usually don't link to ignorant scare stories, I've made an exception here because several people provided excellent pro-neurodiversity responses.) One of the commenters in the enemy camp, who signed as Behavior Analyst, claimed to have worked with autistics for over 20 years but allegedly never had seen the words Aspies and Auties.

This person made the preposterous assertion that the neurodiversity activists were the ones doing the stereotyping by "identify(ing) themselves as their disorder," unlike the understanding, caring psychologists who supposedly view each individual as unique. Jeez, if I could mine that mountain of shit and sell it as fertilizer, I'd be a millionaire in no time.

I very much doubt that anything I have to say to you will get through your thick prejudiced skull, Behavior Analyst, but here goes anyway: None of us in the autistic civil rights movement "identify as a disorder." Rather, we see ourselves as capable, intelligent, healthy human beings whose brain structure developed in the way that nature intended. You and your accomplices in psycho-bigotry are the ones who can't look at a genetic difference without labeling it as a disorder. It's no wonder you're so afraid of us: We threaten your livelihood. As soon as autistic people are accepted and respected as a social minority group, you'll be out of business.

But you know what, we didn't all just wake up one morning and arbitrarily decide, "Oh well, I'm bored with watching trains, maybe it would be fun to turn into a militant activist." To the contrary, we were quietly going about our ordinary lives when war was declared on us without provocation (the so-called war on autism) and we had no choice but to defend ourselves. In today's world, autistic children are abused, bullied, treated as damaged goods, targeted by quack-cure peddlers, and put into segregated classrooms every day because of prejudice. Autistic job applicants are rejected and left to struggle with unemployment every day because of prejudice. Our very existence is described as a plague and an epidemic every day because of prejudice. Our tax money is being used (in the US, by a purportedly pro-life government) to fund eugenics research to exterminate the autistic population through prenatal testing and routine abortion. And who is responsible for the prejudice that has put us on the brink of the largest genocide in history, Behavior Analyst? Go look in a mirror.

No doubt you and all your behaviorist pals thought you had a great business model, terrorizing ignorant parents into believing that their children would end up as helpless zombies in institutions if the parents didn't immediately empty out their bank accounts to pay for your services. But you incited fear and hysteria all too well, and now those chickens are coming home to roost—great big squawking murderous chickens, a whole flock of 'em. And what they're saying is that autistic children are too expensive, too different, too much trouble to raise, not cost-effective, better off dead, Lebensunwerten Lebens. It's Nazi-style eugenics all over again.

This is the bottom line, Behavior Analyst: Unless you have a hefty retirement fund, you had better start retraining for another career, because one of two things is going to happen in the next decade. Either there will be no more autistic children because they will all be aborted, or the neurodiversity activists will succeed in persuading society to accept autistic differences in the same way that the natural genetic differences of other minority groups have been accepted. In either case, there will be no more demand for your services. To put it another way, you don't have much longer to enjoy the gravy train, buddy.

Labels:

37 Comments:

  • I hope Behavior Analyst shows up to discuss why he thinks it's appropriate to medicalize and stigmatize autism. I think he will, but I wonder if he'll be up to debating the matter with us.

    By Blogger Joseph, at 11:41 AM  

  • I hope he turns up, too.

    I'd be interested to see what he has to say to someone like me. ;)

    (What with being a former ABA therapist and all...)

    By Blogger Jannalou, at 12:12 PM  

  • Are you ever going to learn that the notion that autism is genetic is now obsolete? BTW, the earth is round.

    By Blogger Fore Sam, at 4:26 PM  

  • A "disease"? WTF?

    And yet another parent who thinks about taking their kid out.

    I think I need to go kick something. :-(

    By Blogger Attila The Mom, at 7:11 PM  

  • It is always good to see John Best's wit and stellar intellect on display. It reminds that there is an entire class of people that are completely devoid of logic or sanity, and I realize I don't dredge at the bottom tier of society.

    Thanks, John.

    By Anonymous anonimouse, at 10:48 PM  

  • Joseph and Jannalou: Maybe we scared him off. It would be an interesting debate, though.

    Attila: I know the feeling. You may borrow my virtual steel-toed boots if you want 'em.

    By Blogger abfh, at 11:20 PM  

  • abfh,

    Thanks for finding this article. I intend to blog about it also, but from a different angle...IF I ever get time, that is...a constant problem around here.

    I posted a comment a little while ago. So far it's still at the end of the list of 55 comments.

    http://atlanta.creativeloafing.com/gyrobase/Content?oid=107423&comments=yes#comments

    By Anonymous Autiemom, at 1:13 AM  

  • Lisa, yes, I agree with you that some of the people who argued with Mary Grace took it too far. Although she seems overly proud of having learned to pass, she is a child, after all, and it's clear that she hasn't thought about the civil rights issues.

    By Blogger abfh, at 10:48 AM  

  • Hi,

    I'm the Behavior Analyst, and I would like to respond to some of your comments and obvious misconceptions about me and my role in this profession. I certainly hope you all went back and read my comments on the CL story, as it seems the lead blogger here missed a couple of points in his compulsive need to find something to get riled up about. It is strange for me to be cast as the "enemy", a role I have never seen myself in regarding my work with individuals with disabilities. Does that word bother you, "disabilities"? Maybe I should use "differently abled", which basically includes everyone in the world, doesn't it? First and foremost, I am adamantly against the marginalization and ostracization of any individual based on different abilities, and I work diligently as a rights activist to insure that my clients get equal rights and respect in all situations. Call me what you want to, but I guarantee you will never find me compromising the rights of any individual I have been asked to serve. As I said in my CL comment, the essential component of any relationship is knowing the individual, and respecting that individual as you would want to be respected. Did you miss that part, blogger? Anyway, I get the feeling that the majority of the activist and self proclaiming "auties" and "aspies" are very personally aware of their own unique "essence of being", but have little or no insight or awareness (or concern?) for the differential abilities of the many others that us evil caregivers and psychotyrants have labeled as having ASD. Labels serve a function is society, and just because some members of our culture use those labels to discriminate and demonize certain people, does not diminish the communicative value of those labels. What part of "spectrum" is unclear to you? The concept covers a vast range of abilities and characteristics, and the only way individuals with different abilites are ever going to be socially included in a transformative manner is if there is better understanding by the majority of their uniqueness. Geting riled up and calling someone bad names isn't helping your cause, that's why I asked for more honest dialogue. The vast majority of my work is with individuals such as Blake, not individuals who can speak up and defend themselves, as so many of you obviously are capable of doing. I have dealt with people who have beaten their heads on surfaces and with fists to the point of total blindness and impending death from self inflicted brain injury. I have seen people who have chewed and torn their own skin to the point of requiring plastic surgery, and I have been assaulted and bitten myself many times, requiring injections and antibiotics to fight off infections. In our society, there are long standing established "social norms" that the majority of people will adhere to in order for culture and individualiy to thrive and grow. How you can say that these individuals who exhibit such dangerous and life threatening behaviors have any right to interfere with the lives of others (ever sat in a classroom with someone who screamed for 6 hours? I have, nobody learns anything), and what kind of society would we have if we allowed these individuals with such severe self injurious behaviors to engage in them, to the point of death? I am fully aware of the vast range of the ASD spectrum, and I strive to learn more every day. You act like I "don't get it". maybe I don't, but I am trying. I do know that namecalling and derogatory statements are punishers, and are more likely to push people away than to motivate them to work harder. Blogger, you need to take a long hard look at how your militant activism is affecting those who may be in the positions to help you the most. I speak from experience, as I fought against social norms for years, tried to do things "my way", and demanded (without success) that the world change because I wanted it to. I realized that people didn't listen when I yelled and stomped, but when I got the PhD and BCBA after my name, they started to listen a lot more closely. My views have not changed, I am still as strong a human rights advocate as I have ever been, but now I have social validation and credentials that entice people to listen when I speak. I am on your side, not your enemy. Think about what people hear when you yell, compared to when you talk. And think about what I have said before you spit on my feet. Thank you for the opportunity to respond, I will try to read whatever you and your fellow bloggers have to say, but I doubt I will have the time to respond again. One last thing, my rates are the lowest in the state of Georgia for a licensed PhD/BCBA. I am not getting rich, because I know that the more I ask for, the less is available for the individual. I have found a comfortable spot financially, but I'm not driving a Beemer or living in a McMansion. Not my style.
    Take care,
    Behavior Analyst

    By Anonymous Anonymous, at 11:27 PM  

  • I don't think anyone is suggesting that it's all fine and great to let people scream for hours and engage in violent and destructive acts.

    I don't see why people have to go and start bringing up superlative examples whenever someone points out that maybe there's more than one valid neurological configuration. I have never in my life encountered an autism rights advocate who thinks nobody should parent their children or that we should all just nod and smile at self-injury.

    If I used that sort of approach, I'd have to point out that the prison population consists mainly of nonautistics, and that every single person who bullied me in elementary school (including a full-on assault with rocks and sticks) was neurotypical.

    Violence isn't an autistic problem, it's a human problem. And if you look throughout history, I think you'll find that the vast majority of violent and destructive persons haven't been autistic.

    So, since superlative examples exist, should I be able to make the claim that neurotypicality leads to violence, bullying behavior, and murder? Of course not. It's a matter of individuals reacting to individual situations.

    By Blogger Zilari, at 1:17 AM  

  • PS: I am really not trying to sound hostile here, but I know firsthand what it's like to try and try to communicate something important but then have people act like you're not doing or saying anything at all. It almost sounds unreal until you actually experience it.

    From what I've noticed, many of the traditional means of responding to such situations (i.e., people getting frustrated to the point of meltdown) actually have considerable potential to only make things much worse.

    By Blogger Zilari, at 1:31 AM  

  • Behavior analyst would have us believe that he cares about the welfare of autistic people, right after he comes singing the praises of an article which, once again, tells us that an ordinary occurrence in the life of the familiy of an autistic child consists of the parents planning his murder. And I quote:

    "One day, Mark was so depressed as he drove Blake home from school that he stopped his car by a cell phone tower near their home in north Gwinnett. For a few minutes, he sat there and contemplated how much easier it would be for both of them if he took Blake and climbed to the top of the tower and jumped."

    Then he shows how he misconceives the autism right movement: (1) By suggesting that we have a problem with the word disability; (2) By using the euphemism "differently abled" instead -- which I understand is widely rejected by the disabled community; (3) By suggesting that all autistic self-advocates are high functioning -- something which I'm sure offends those self-advocates who do not see themselves as high functioning.

    Behavior analyst then goes on to characterize a segment of the autistic population as a danger to themselves and others. I propose this is about as bigotted as this or this.

    Pray tell, Behavior analyst, how do you treat injurious behavior? The JRC believes they can do it. Do you agree with their methodology?

    Autistics have disccussed self-injury. See, for example, this. You might learn something. What a concept. Find out what autistics think about what autistics do.

    Behavior analyst is threatened by autistics organizing and speaking about civil rights, stigma, self-worth and so forth. Professionals who live off of autism would rather keep telling us that it is horrible to be autistic and to have us seek their services so they can make us normal.

    By Blogger Joseph, at 10:44 AM  

  • Behavior Analyst, although you profess to support human rights and to respect everyone equally, I haven't seen any proof of that in your writing. Instead, you throw around snarky, prejudiced, stereotyped insults to the effect that autistics can't understand what we read, have no concern for others, etc. You dismissed our advocacy of human rights as a trivial debate over the use of the word "disabilities," which I didn't even mention in my post.

    The only point to which you actually responded was my criticism of segregated classrooms, when you suggested that you don't believe autistic children "have any right to interfere with the lives of others" by being in the same classroom with them. Sorry, pal, but that sort of attitude doesn't exactly make you a supporter of human rights.

    Did it ever occur to you that if a child is screaming for 6 hours in a classroom, he or she is probably in serious physical distress? Did you try to find out why the child was screaming, or did you blindly keep on applying various behavioral techniques, like when the Judge Rotenberg Center (JRC) gave a total of 61 behavioral aversives, including ammonia, spanking, pinching, vinegar, jalapeno peppers, and hot sauce to a young woman who was severely ill and within hours of her death?

    I'll echo Joseph's question: What do you think of the methods used by the JRC, which also include electric shock? What methods do you use when dealing with people who self-injure?

    By Blogger abfh, at 2:10 PM  

  • ..although you profess to support human rights and to respect everyone equally, I haven't seen any proof of that in your writing. Instead, you throw around snarky, prejudiced, stereotyped insults to the effect that autistics can't understand what we read,..

    Point #1 - Should I just sit back and take your insults and condescending comments without responding simply because YOU are autistic? It seems to me you are quite capable of dishing out the snark, so I figured you could take it. If you can't, aren't you simply reasserting the premise you are trying to deny? Remember, you sought me out to contribute to this blog, so you are getting what you asked for.
    Point #2 - based on how you interpret what I have already written, YOU do appear to have a comprehension deficit. Notice I did not say ALL autistics, just YOU. and JOSEPH, obviously.

    ..Did it ever occur to you that if a child is screaming for 6 hours in a classroom, he or she is probably in serious physical distress? ..

    Now I do, absolutely. I consider every possibility, with physical health as the first area of concern - that's the whole premise of doing a comprehensive functional assessment. In the cases I cited, I was in the process of learning, and sadly for the individuals involved trying to figure out what was going on was a "trial and error" process. I'm much better at it now. When asked to work with an autistic client who exhibits behaviors that are interfering with their wellbeing, I start with biology, and work toward environment. The first thing I do is try to determine what the occurrence of SIB is communicating - pain, anger, frustration, boredom, what? If someone is in pain, you get them the needed medical treatment. Is someone is expressing their distress over the demands of a particular situation, you try your best to modify that situation and remove or fix whatever component is causing the distress. If someone is bored, you try to enrich the environment with multiple choices and options. While you and your pals condemn the very people who are most dedicated to supporting the rights and needs of the disabled, you obviously have not kept up with the actual contemporary practices of ABA, have you? Anyone worth their salt in this field knows that punishment (use of aversives to stop behaviors) has basically fallen from the acceptable treatment repertoire and been replaced with much more humane and effective (in the long term) positive intervention techniques. I even train staff to allow people with autism to "do their thing", as long as there is no danger or injury involved.

    ..he comes singing the praises of an article which, once again, tells us that an ordinary occurrence in the life of the familiy of an autistic child consists of the parents planning his murder...

    The writer was stating a fact, reiterating exactly what the parent told her. If his thoughts offended yoou, that's a shame. In no way was the author of the article condoning the parent's impulsive thoughts, but rather she was illustrating the incredible depth of the frustration and pain that loved ones feel for their family member. How you can conceptualize that very powerful passage as an "ordinary occurrence" that others accept as ok is your personal problem. It was a horrific event, and it hurt me to read it, knowing the intense emotional pain that the parent had to be experiencing in order to be driven to that point of desperate thinking. But denying truth and reality only makes your very militant stand less valid.

    ..Behavior analyst is threatened by autistics organizing and speaking about civil rights, stigma, self-worth and so forth. Professionals who live off of autism would rather keep telling us that it is horrible to be autistic and to have us seek their services so they can make us normal...

    Wrong. Who's dishing out the "snarky, prejudiced, stereotyped insults" here? Go back and read my remarks on this blog again. Nowhere do I say any of that. I stated that I stand by people with autism in defense of their rights. I also stated that I don't make a great living financially, and if all autism disappeared tomorrow it would not affect my income significantly, and I would be more than happy to move on with my life and do other things. you are fighting a straw man battle here, pal. Give that angle up.

    You seem hellbent on insulting me and blaming me for your own incorrect assumptions regarding what you think I mean when I say something, and telling me what I am doing wrong, but not once have you offered any insight or information into what you think is the right thing for us NT's to do. So tell me, what do YOU want?

    Like I said before, I probably won't be back except to read. your unfounded, misdirected, nasty, angry misinterpretations of what I have written already shows me that there is obviously no constructive dialogue to be found here. I wish you all the best, and if I ever cross paths with any of you, I will greet you with a smile and an open heart and mind.

    Thanks, and good luck with whatever you are seeking.

    Behavior analyst

    By Anonymous Anonymous, at 4:58 PM  

  • There's more in my next post about irresponsible news stories that describe parents who harbor thoughts of murder.

    By Blogger abfh, at 1:13 AM  

  • Behavior analyst: I don't think you get it. You first praise an auti-autism article; an article suggesting that it's understandable for parents to be thinking about mudering their autistic children (don't tell me the article doesn't suggest this - it does). Then you go and attack autistic self-advocates. Finally, you come and tell us you're in the side of autistics. That's not just inconsistent, it's wrong.

    You so don't get it that you're surprised deaf people also identify with their "disorder". You should go talk to deaf people to see why that is. To you, having autism or deafness is no different to having a hemorrhoid. I'll just write that off as a Theory of Perspective (ToP) deficit.

    BTW, you never answered what you think about the JRC's methods for treating self-injury. You also didn't give your opinion on what the difference is regarding your diatribe about how unacceptably violent some autistics are vs. this and this. I don't think you can come up with a reasonably sounding difference.

    By Blogger Joseph, at 12:12 PM  

  • BTW, don't pretend to tell me what it must be like to be the parent of an autistic child. I am the parent of an autistic child.

    By Blogger Joseph, at 12:14 PM  

  • I was very reluctant to pitch into this one as I'm very unclear in my own head about how to respond to a number of points that the Behaviour Analyst made. For instance, there are clearly a minority of autistics who do engage in seriously destructive behaviour. Now these individuals are used by the likes of BA to justify the idea that autism is terrible. However, that doesn't make such things ok and no-one I hope would suggest that it is ok to scream for 6 hours, attack people, or bang your head so hard that you risk killing yourself. It is very likely that in most cases it will be due to frustration and meltdown, but is it always the case? The discussion that Joseph linked to on Michelle Dawson's site in fact suggests that autistics who self-injure do it for a wide variety of reasons.

    Secondly, his description of how he deals with such behaviour seems fairly sensible in and of itself - work out why the person is behaving in this way and then treat the cause of the behaviour. His point about ABA also reminds me that I am myself agnostic about it - I suspect the term ABA covers a variety of techniques which can be used in different ways and for different reasons.

    Nonetheless, the comment he posted beneath the article itself were clearly objectionable. His dismissive comments of the deaf pride community show exactly where he is coming from (just realised we're all assuming he is a 'he' but it might be a 'she'. Anyway). He also argued that the people who were debating autism with Mary Grace were attacking her and being 'shameful' which is nonsense - they were *debating the issues* and Mary seemed perfecly happy to argue her case. Incidentally, her views betray a very conservative view, and one trusting of the establishment (there's no danger of forced treatment of autistics, apparently, because "This is America").

    BA's stance raises the important point that it is not enough to simply be in favour of 'disability rights', that is to fight discrimination in employment or education, and other such issues. People like BA can campaign on all these issues, yet still regard autism as a devastating disorder, and see the prevention of more disabled children being born as a good thing. What is also necessary is to oppose the disablist ideology that directs most people's views on disabled people. Ultimately, we have to start by rejecting the very idea that 'disability' is a 'bad thing'.

    By Blogger Redaspie, at 6:12 PM  

  • BA's stance raises the important point that it is not enough to simply be in favour of 'disability rights', that is to fight discrimination in employment or education, and other such issues. People like BA can campaign on all these issues, yet still regard autism as a devastating disorder, and see the prevention of more disabled children being born as a good thing. What is also necessary is to oppose the disablist ideology that directs most people's views on disabled people. Ultimately, we have to start by rejecting the very idea that 'disability' is a 'bad thing'.

    YES!

    Speaking as a field worker and as an individual with an "invisible disability" - I agree heartily with what Redaspie said here.

    I recently 'met' (on MySpace) a man who is fundraising for Cure Autism Now. He sent me a message and asked me to help with that; I wrote him back and said that he obviously didn't read my profile.

    My profile says, at one point in the 'About Me' section, "Now, just to be clear: One of my interests is autism, but I'm not interested in curing it. For information on my views regarding disabilities such as autism and ADHD, visit my blog, Commentary on the State of the World. For blogs about accepting autism, check out The Autism Hub. For some good writing about the cure movement and why it's wrong, check out My Act of Combating Neurobigotry. Thank you." (The blogs are all linked in my profile.)

    I've just added another, longer paragraph about ADHD and how it does in fact exist. Anyway.

    This man went back and actually read my profile, then followed the links! He then wrote me back. Here's part of what he wrote: " Thank you for opening my eyes to the other side of the coin. I never realized such a movement existed. ... All that being said, I still feel that there are so many un answered questions about Autism...what causes it, and if there could be a way to prevent it in the future. My hopes and dreams are not ot try to "cure" those with Autism...but to find a scientific reason and answer for whatever causes it and perhaps one day prevent it from occurring at all."

    There's more. But, essentially, he didn't quite get the message that autism shouldn't be prevented any more than it should be cured. But at least he's thinking more. I told him to keep reading the blogs and to comment sometimes. So we'll see if he does.

    (I hope everyone understands the connection between this story and the comments and the post...)

    By Blogger Jannalou, at 6:47 PM  

  • I just blogged about this article. I'm trying to decide whether or not to post my essay to the comments section of the article.

    ABFH: I don't think this blog gets pingbacks, but I did reference your post.

    By Anonymous Autiemom, at 9:37 PM  

  • ...his description of how he deals with such behaviour seems fairly sensible in and of itself - work out why the person is behaving in this way and then treat the cause of the behaviour...

    Finally, a person who actually reads and interprets what I have written in an objective and clear manner, and responds to it with a well thought out and nondemeaning manner that actually resembles a functional educational exchange!

    ...Now these individuals (severe SIB) are used by the likes of BA to justify the idea that autism is terrible...

    No, these individuals are simply part of the autism SPECTRUM, and their individual behaviors are "terrible" in terms of the danger to themselves. A good behavior analyst never overgeneralizes the behavior of one individual as a landmark of all individuals with that particular diagnosis. I don't operate that way. As I have repeatedly stated in this discussion, I deal with every individual as a unique individual. I try to give them (as indicated through their behavior and idiosyncratic communication techniques) what they want and what they need.

    ...His dismissive comments of the deaf pride community show exactly where he is coming from...

    Wrong. Here is my EXACT quote from the first comment on Alyssa's original article. "I was particularly struck by the responses of the people with Asperger's who clearly "identify themselves as their disorder", a phenomenon I have observed before in the deaf comunity". Please show me where this comment indicates a "dismissive" attitude to the deaf community. By saying I was "struck" I was simply emphasizing that new knowledge was coming into my experience. I was acknowledging the existence of that community, and expressing my (nonjudgemental) surprise that a similar community exists in the realm of autisim. I did not know this, and in no way was I making a "value judgement" of any sort. I have several friends who are deaf, and I know enough ASL to communicate with them fairly effectively. They have made me VERY aware of deaf culture, and I respect it and honor it as much as I do any other culture. I also have several close friends who have Asperger's, and if you asked any of them how I treat them, you would no doubt be told that I am a good and trustworthy friend who unconditionally accepts them and their unique qualities.

    ...People like BA can campaign on all these issues, yet still regard autism as a devastating disorder, and see the prevention of more disabled children being born as a good thing...

    In some cases, autism IS a devastating disorder, and if preventing future disabilities for an individual while in vitro is ever possible without compromising any other aspect of their imminent life experience and abilities, I say go for it. Fetuses with Down's syndrome are having open heart surgery while in the womb to correct the life threatening congenital heart defects that ultimately kill them at a young age. Is that wrong? Hell no.

    This gross generalization regarding eugeninics and abortion, if applied to me, is completely wrong, offensive, and totally absurd. I HAVE NEVER, AND WILL NEVER, advocate the termination of a pregnancy based on the results of a test that indicates the fetus has a potentially life affecting condition. That is a totally private decision for the parents of that individual, and I have no right to make any influential statements one way or the other. If that stance bothers some of you because I am not taking a stand one way or the other, tough shit. At some point YOU ALL have to honor and respect the legal rights of others to make decisions that have lifelong consequences, and I will not waver on that position. My point is, it's not YOUR choice, nor is it mine. The federal law in America states that the choice to terminate a pregnancy belongs to the mother and father of that future human being. My involvement and commitment to provide services to an individual with autism comes when they are born and living with the disorder. How they got there is of no concern to me. In my humble philosophical opinion, a disability is not a"bad thing", it just "is".
    All of the Autism activists who scream about "Eugenics" need to make sure they know what they are talking about, and that they target the people who actually advocate those types of practices. I am not one of those people. Case closed.

    I have two final comments. First, those of you who think for a minute that the thoughts of murder and suicide are so horrific and inappropriate need to take a close look at the general human condition. I am a licensed psychologist, with extensive training and experience in dealing with all forms of mental illness and psychiatric issues. Thoughts of suicide-homicide in all individuals is much more common than you would expect, and the fact that many parents of children with disabilites have had these thoughts should not be a surprise. It often comes from chronic stress, and is very common. Horrible? Yes. Is the follow through on those thoughts unacceptable? Yes. But absolute condemnation of the people who have these thoughts will only lead to repression of expression, which will likely lead to action. By allowing family members to talk openly and honestly about these feelings you will give them at least one alternative to acting out on them. Ignoring, condemning, or demonizing those individuals will not solve this basic human problem. I have had client's with Asperger's threaten suicide over not getting a new radio, or making a "B" in a class. By acknowledging the emotional intensity of those events and openly addressing the threat of suicide, I have been able to put things in a more appropriate perspective. I believe that acknowledging the depths of despair and the desperation of family members of autistic individuals goes a long way to helping them generate much more socailly acceptable alternative responses to their stressors. That's what a background in clinical psychology tells me, and I have been right so far (knock wood).

    Finally, I really believe that families and parents with autistic children need to reassess the role good clinicians play in the care and service delivery of their children. I have said this before, we are not the enemy. I have spent the last two weeks trying to keep two of my autistic clients out of jail because their tantriums disrupt the calm lifestyle in their neighborhoods, and to get one with Asperger's placed in an appropriate priogram where his true disability will be acknowledged and recognized, and he will not be treated like a noncompliant juvenile delinquent. We (good behavior analysts/clinicians) run interference betwen people with disabilities and the other social agencies that try to pigeonhole, marginalize, and criminalize their behaviors. All I ask is that you work with these professionals, but never lose sight of your responsibility to stand up and defend your child or yourself. I am not your enemy, but the radical activists and deluded parents who adopt nonempirical, unsubrantiated, and iexremist belif systems, and refuse to work with dedicated professionals who do not accept their views as truth, are more dangerous than you will ever know. Behavior driven by anger, propaganda, subterfuge, and tunnelvision will never succeed in creating the type of social transformation that is need to make things better for the disabled.

    Don't drink the Kool-Aid!

    Thank you,
    Behavior Analyst

    By Anonymous Anonymous, at 10:54 PM  

  • Behavior Analyst - "identify with their disorder" well alright, may not have been meant as dismissive, but the very phrase is axiomatic of a view that regards disability as an inherently bad thing. No one in deaf pride regards being deaf as a disorder - that's the whole point of the movement!

    Your argument in favour of finding ways to eliminate disabilities 'in vitro' while not compromising the identity of the individual involves an artificial distinction between the person and their disability i.e it is impossible. Getting rid of a disability *will* result in a different person.

    I agree with you that it is up to individual parents to decide whether or not to abort a fetus, for whatever reason. However, I would also fully support autistic parents deciding to abort a fetus because it *isn't* autistic. Would you? In fact let's go one better as that's probably too easy. Do you think that autistic parents should be allowed to get IVF treatment to ensure their child is autistic (this assumes the technology to do so exists which at present it doesn't)?

    This I think goes to the heart of the dilemma. Supporting 'disability rights' is uncontroversial - only a few out and out bigots would argue that disabled people should not be allowed to get jobs, vote or what have you. But supporting 'disability *pride*' and the concurrent rejection of conventional paradigms of disability as a misfortune, as something to be avoided - that is where the controversy lies. I believe no case of autism, no matter how extreme, is devastating in and of itself - it only is because of the social context or the presence of co-morbids. Do you agree? And I note you still haven't commented on the practices at JRC.

    Finally, on the 'militant' angle, well I'm a revolutionary Marxist so I'm all in favour of militancy. Agree however, that we in the autistic *pride* movement should be willing to work with people who don't agree with us more generally on specific issues where we do agree e.g. better support services for parents, or more supportive employment, and so on.

    By Blogger Redaspie, at 5:58 AM  

  • ...I would also fully support autistic parents deciding to abort a fetus because it *isn't* autistic. Would you? In fact let's go one better as that's probably too easy. Do you think that autistic parents should be allowed to get IVF treatment to ensure their child is autistic (this assumes the technology to do so exists which at present it doesn't)?...

    Good comments, and a very provocative question. This is an ethical issue, and once again I go back to what I said about the private rights of parents to choose whether or not to abort pregnancy. I cannot make that decision for them, nor can I express an opinion about it at this time since I have not been in the situation to counsel people who may be. And to speculate on the use of particular life-changing events when the techniques required to do so does not exist yet is somewhat spurious to me. I have enough ethical dilemmas in the here and now to deal with, and like I said, my clients come to me as they are, so how they got to be that way is not as significant to me. I am very supportive of individuals with disabilities who choose to adopt children with similar disabilities, but please don't misconstrue this into something negative regarding "birthrights". I have not expressed an opinion on that, and I won't at this time.

    ...I believe no case of autism, no matter how extreme, is devastating in and of itself - it only is because of the social context or the presence of co-morbids. Do you agree? And I note you still haven't commented on the practices at JRC...

    If you are assuming that severe SIB is a "comorbid" instead of a biologically based characteristic of certain types of autism, then that may be a fair statement, but if your statement that exreme behaviors in some individuals are only defined as "devastating" by the social context, I have to disagree. As I stated before, I have seen individuals engage in behaviors that would have resulted in death, and I don't think any civilized human being on this particular planet (it's ours, BTW) would knowingly let that occur. Finally, I thought my description of an appropriate way to do a functional assessment and my comments about how punishment had fallen from favor in the ABA world would have answered the question regarding my opinions on the use of punishment and aversives. Obviously that is one of the few comments that has not been deconstructed, so here is my stock answer. I am opposed to the use of physicaly injurious aversives at any level of intrusion, however there are social aversives (verbal disapproval such as "stop" or "no", time out if it is functionally appropriate, and some nonrestrictive protective devices to reduce self inflicted injury while allowing freedom of movement) that can be appropriately utilized ONLY when alternative positive behavior change procedures have been adequately attempted but failed. It would take me all day to go through the reasons why punishment (as defined by Skinner et al) is not a good technique for behavior change, but you can pick up any Behavior Mod textbook and get that info rather quickly. Fortunately, I do not have to deal with this issue very often because none of the agencies I contract with allow the use of aversives. This motivates me to be creative and to focus on positive behavior change techniques, and my success rate is pretty acceptable. The biggest challenge I face is "untraining" caregivers to stop using punishment and to start using positive reinforcement, and to accept and allow certain behaviors to be. That is the battleground I am on, and it ain't easy. My autistic clients are rarely my problem, it's the staff and the bureaucracy I fight with most of the time.

    Thanks for your thoughtful response.

    Behavior analyst

    By Anonymous Anonymous, at 9:55 AM  

  • Redaspie: Good job explaining why "identifying with a disorder" expresses a dismissive attitude. And I don't have any objection to your posting to let me know that you've updated your blog; after all, there are so many autism rights blogs now, it's hard to keep up with them all. :)

    Behavior Analyst: You're correct in pointing out that all people have occasional thoughts of homicide or suicide. The social context makes a huge difference, though. For example, if I am driving along the highway and find myself wishing that I had a futuristic weapon mounted on my car to disintegrate the guy in front of me who is going too slow in the fast lane, that's a harmless thought because it is not directed at a stigmatized minority group. Even if I write a news article or blog entry about killing slow drivers, nobody is actually going to do it. Our social environment doesn't include thousands of hysterical news stories about a devastating epidemic of slow driving, what a huge burden to society slow drivers are, and why homicidal thoughts are a natural response to the intense emotional pain of people stuck behind slow drivers.

    Perhaps my post unfairly lumped you in with those behaviorists who drum up business by using scare tactics on parents of newly diagnosed children (I get the impression from your comments that you work mainly with older children). If so, I withdraw the accusation. I would like to point out, however, that even if a person is not intentionally condoning child murder, advocating eugenic abortion, etc., that person may still be contributing to a social environment that makes such evils more likely to occur. To use the lynch mob example mentioned in my next post, anyone who wrote or talked about lynching as a normal and understandable event had some amount of culpability for it, even if they did not actually participate in a lynching.

    By Blogger abfh, at 11:57 AM  

  • I would also fully support autistic parents deciding to abort a fetus because it *isn't* autistic. Would you? In fact let's go one better as that's probably too easy. Do you think that autistic parents should be allowed to get IVF treatment to ensure their child is autistic (this assumes the technology to do so exists which at present it doesn't)?

    If the argument for allowing eugenic abortions of autistic fetuses involves unlimited freedom of choice and freedom of information, the clearly there is absolutely nothing that could prevent the above (or cloning for that matter). If ethics is a consideration, as BA suggests, then the freedoms which allow those eugenic abortions to occur could also be limited. We should hope no double-standards will exist in that regard, but maybe that's too much to hope for.

    By Blogger Joseph, at 6:06 PM  

  • Joseph - this veers right into the abortion rights debate, so let me make my position clear on this. I am in favour of abortion on demand, no restrictions. The woman and she alone has the right to control what goes on inside her own body - not doctors, the Church, the government or anyone else. Note btw that most people in the above categories I just mentioned are likely to be male. We still live in a deeply sexist society and the battle for reproductive rights remains a hugely important one, particularly in the US where the religious right are trying to destroy these rights.

    I certainly agree that unborn fetuses do deserve some ethical consideration, and I'm sure the vast majority of women considering abortions do take that into consideration. The idea that there are all these evil women slaughtering their unborn children without a qualm is imo a mysogynistic myth. Nonetheless stating that women should not be allowed to have an abortion in such-and-such a circumstances is in itself deeply problematic, as it involves limiting a woman's right to control her own body.

    By Blogger Redaspie, at 11:03 AM  

  • Hey Behavior Analyst, I haven't seen those so-called "behaviors", I've engaged in them. And you know what? Torture still wasn't right, I don't care how it's dressed up as a "last resort". People who equate preventing death with engaging in JRC-like torture are just excusing the inexcusable.

    By Blogger ballastexistenz, at 8:01 PM  

  • Amanda - obviously agree but I don't think that Behaviour Analyst was arguing in favour of torture. He was arguing in favour of non-physical aversives like 'time out'. Mind you I'd question whether they are useful either, certainly in cases where children are engaging in self harm. As abfh's latest post argues, if someone is self-harming, whether they are autistic or not, is due to external circumstances (and these are almost invariably *political* in the broad sense of the word).

    By Blogger Redaspie, at 11:00 AM  

  • I've stumbled by accident onto the article in question, and found it somewhat interesting, athough I didnt find it to be much more informative than the average coverage ASD receives in the news. I did find the comments by various individuals including 'Behavior Analyst' to be very interesting though, and followed the links to this blog and commentary. Speaking as a person who has some basic familiarity with the subject, but with no axe to grind or side to represent, I find it interesting that a person such as 'Behavior Analyst' can present their views so clearly, rationally and reasonably, and still be so maligned and mischaracterized by those that hold a differing viewpoint like some of the people here. As a person who (much like the general public) doesn't have any special knowledge of this subject, I have to think that the arguments expressed in this blog, if they are any reflection of the beliefs of the autistic activist community in general, will not play very well to the public that they seem to be so concerned about educating. Of course, that's just the opinion of one average anonomyous passerby. Personally, I find the measured and rational commentary of a person who is working in the field and obviously dedicated to making a difference, more palatable to that which sounds a lot like spiteful armchair criticism with a strong confirmation bias. Thanks for listening, its obvious both sides have a lot to learn from each other.

    Average Anonomyous Passerby

    http://en.wikipedia.org/wiki/Confirmation_bias

    By Anonymous Anonymous, at 10:58 PM  

  • I didnt find it to be much more informative than the average coverage ASD receives in the news.

    Yes, it was an "average" story... and that's a large part of the problem. A century ago, the average coverage that women and "negroes" received in the news often had to do with their so-called mental inferiority. When prejudice becomes so widespread, most people don't even recognize it as prejudice.

    BTW, the Behavior Analyst is not the only person "working in the field" who has commented here.

    By Blogger abfh, at 1:41 PM  

  • Good read, as always abfh! Thank you! I would chime in here, but, I am tired--lots of debates going on today! I will say this--ABA horrifies me!!!!!!!

    By Blogger S.L., at 10:41 PM  

  • Did anyone besides me find Behavior Analyst's posts unreadable, especially the first one? I can't read a long entry with no paragraph breaks. Even long paragraphs are difficult. I don't know if it's an Aspie thing or just middle aged eyes.

    I noticed all the Aspies and auties here were considerate and broke your posts into short paragraphs. Thank you! You rock! The Elemets of Style is now available online for free.
    http://www.bartleby.com/141/

    Sappho

    By Anonymous Anonymous, at 12:23 AM  

  • uoakqwqHi there,

    I am a behavioral analyst in Southern California. I work with quite a number of autistic adolescents and adults. I don't think that behavior analysts will become extinct anytime soon. As you know there is an increase in the number of autisitic disorder diagnoses. I have wondered about the validity of diagnosing anyone in the field of psychology. Not so much from the pathology perspective but from the treatment perspective. What I mean is that many Psyciatrists and psychologists tend to diagnose and than develop a "cookie cutter" treatment plan to treat the individual. If the client does nto respond to treatment there is atendency to blame the client. This is unfortunate because the person is not considered in the treameant plan. Personally I approach each case differently and focus on relationship building as the primary step in developing an indivudal plan for a client. what some call maladpatve behviors are ussually very adaptive behaviors unless they are self injuriious of course. We all learn wasy to deal with environemtn stress and challenges. Anyway I just wanted to respond. You sound very angry but I hope whatever is bothering you gets rexoved. Peace and Love

    By Anonymous Anonymous, at 9:03 PM  

  • "Anyway, I get the feeling that the majority of the activist and self proclaiming "auties" and "aspies" are very personally aware of their own unique "essence of being", but have little or no insight or awareness (or concern?) for the differential abilities of the many others that us evil caregivers and psychotyrants have labeled as having ASD."

    I do think ABFH was launching an inappropriate personal attack, and should have phrased her criticism in much less offensive language. But that is an inaccurate and inappropriate characterization of the autistic rights movement, and is very offensive to lower functioning autistic rights activists as well as those HFAs who are knowledgable and concerned about LFA issues.
    To paraphrase Amanda Baggs, all you people seem to think all you need to do is say these people exist, and everyone will automatically understand what you want to do to them.
    And regarding self-injury, which you keep bringing up, when will you get that it's not about self-injury? We're all agreed that self-injury needs to be stopped, although we may disagree about how. Same (for the most part) with the issue of aggression. But even if, as you say (and I agree) those things are part of the autistic spectrum, they aren't the really important parts from the perspective of autistic people.
    I have read the book Spinning Straw, about an autistic kid (Jeff Apple) with severe self-injury, where none of their interventions helped and he finally bashed his head in and died. That's a terrible condition to deal with, and if a solution can be found to get kids like him to stop hurting themselves, I'm wholeheartedly in support of that. I also support reducing self-injury and minimising potential harm in the vast majority of self-injuring autistics, who aren't even close to endangering their lives with that behavior. But you know what? If, rather than just wanting to get Jeff Apple to stop hurting himself, his parents wanted to make him normal, I'd be opposed to that. (Although I doubt they wanted that - they treasured the way he was when not self-injuring.)

    By Blogger Ettina, at 12:49 PM  

  • I'm discouraged by the so-called representatives of Behavior Analysts. Two of my children have been diagnosed with autism. They both have been involved in a variety of therapies, including ABA. I've made sure that the therapists who have worked with my children have respected them, interacted positively with them, developed a relationship with them ... and the skills to be taught were made secondary. My children aren't problems to be repaired ... teaching them skills to manage the "normal" majority and the world dominated by such, is important to me. This can be done while simultaneously embracing who they are ... not as victims of a disorder but created in the image of God.
    I'm ashamed of the ramblings of the so-called ABA professionals on this site. Their certifications should be revoked, if indeed they've earned any credentials.

    By Blogger C. Polete, at 2:18 PM  

  • Hello Joseph. I am the behavior analyst you have been waiting for. P.S. I also have am a Dev. Neuropsychologist. I only want to state that I have been woking with children/adults w/ Autism for over 20 years. My primary focus is in Severe behaviors. I have helped hundreds of to learn how to communicate, how to function w/ their limitations, and how live. I've helped them to not only walk and talk, but also to dance and sing. It saddens me that you and some of your fellow bloggers are ignorant of the truth behind the madness of an ever growing epidemic.

    By Anonymous Anonymous, at 4:55 PM  

  • I would also like to say that I have worked with Blake and have known his family for years. He is one of my favorite students, and I am happy to call him a friend.(despite his actions of breaking numerous bones of mine, including my jaw, simply for asking him if he needed to go to the bathroom) Until you meet this young man, you will never understand him or what his parents go through on a daily basis. Each of your comments are not only void of compassion, but also of facts.

    By Anonymous Anonymous, at 5:18 PM  

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