What Harold Doherty apparently won’t print.

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I have repeatedly tried to point out to Harold Doherty that far from protecting autistic people, his views of us actually endanger a good many of us. In the service of his cause (silencing the voices of autistic self-advocates, as far as I can tell), he has trotted out the old and dangerous myth that anyone capable of communicating a desire to remain autistic is, in fact, oblivious to the realities of self-injury, institutionalization, running into the street, and so forth.

In response to his post about the supposed “siren call” of neurodiversity advocates, I wrote a reply that among other things acknowledged the reality of autistic people who are considered severely disabled (that’s a classification I officially belong to), and the experiences we go through, but proposed another way of looking at this.

In addition to failing to post my comment, he has written a further response that went:

The reality which you are unable to acknowledge is that a great number of autistic persons ARE severely disabled. The existence of some highly skilled, high functioning autistic persons does not in any way change the fact that many autistic persons are severely disabled. The neurodiversity movement does not acknowledge or even admit that reality.

So, I acknowledge that some autistic people are severely disabled, he fails to acknowledge that comment by deleting it, posts something as if that comment never existed, and then tells the world that neurodiversity advocates are the ones failing to acknowledge something?

I know what he is failing to acknowledge:

One side-effect of the myth that only autistic people who cannot currently discuss being autistic in English are severely disabled, is that autistic people who can discuss being autistic in English die. There is no nice way of describing that. Policy ends up being made by people who listen to people like him. People judge our ability to do other things by our ability to talk or write, sometimes without even bothering to determine what those other things are. People who can talk or write or hold jobs or whatever are turned down for assistance that would allow them to survive. The lucky ones find that assistance in some other way. The unlucky ones go through things like starvation, homelessness, institutionalization, and death.

I wrote To the Kit Weintraubs of the World a couple of years ago, in response to Kit Weintraub spreading similar stereotypes. I don’t need the exact same assistance now as I did then (in part because I live in a more autistic-accessible environment at the moment), but the point still stands, and the Kit Weintraubs and the Harold Dohertys of the world would do well to actually listen to this rather than find some way to dismiss it, ignore it, fail to print it, and fail to acknowledge it.

Or maybe, to them, the lives of autistic people who can oppose their viewpoints in a way they can’t deny are less valuable. I can’t discount the possibility. Maybe if we all just starved to death without any services because we couldn’t possibly be severely disabled enough to need any, we could stop doing things like trying to affect policy and ethics surrounding autistic and other disabled people. Maybe we’re just too inconvenient for anyone to acknowledge — and maybe the fact that we are committed to building a world in which people of all disability classifications are able to live full lives regardless of what classification they happen to fall into, will get swept under the rug so long as they keep claiming that we don’t live the lives we lead or hold the views we hold. Whatever it is, they sure don’t want to listen to us.

For more on this topic, read Autism Advocates Do Not Take Autism Seriously. One has to wonder, at any rate, why so many so-called “autism advocates” are so dedicated to trampling on the autistic self-advocacy movement.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

24 responses »

  1. hmmm, yes, it was here where I earlier raised the issue of Mr. Doherty and his censoring. At least I know it’s not just me….
    A word to the wise — I wouldn’t bother even trying. Even if he “lets” you express your comments there once, that doesn’t mean he’ll let you reply to his rebuttal of your comments.

  2. Harold didn’t respond to my comment on Autismvox in which I noted that I have actually *been hit by a car* (despite being able to type on the Internet) either. And he seems to have missed the point of Joseph’s comment as well — the notion that disability and ability can coexist in the same person, as opposed to there simply being some people that are “severely disabled” in an all-encompassing sense and some people who aren’t severely disabled.

  3. I think one of the best posts you did that helped to explain this at least partly was the one where you had two columns, entitled “too autistic to know what you’re talking about” and “not autistic enough to know what you’re talking about”. I think I am paraphrasing, so apologies if I am slightly wrong.
    The thing is, is that some people have such rigidly defined views on what autism is and what autistic people are like that when those views are challenged they refuse to acknowledge the differing viewpoints.

  4. I’m not sure how to describe what I want to write (that I keep falling asleep, inexplicably, is not helping)…so apologies in advance.

    But I think that Weintraub and Doherty have an attitude issue that goes much deeper than the conscious, logical level you’re analyzing them at. I don’t think they *can* be logical about autism — for quite a few reasons, I think they’re like those scary, dangerous homophobes that believe all kinds of ridiculous things about gay people against any-and-all evidence given to them.

    (I don’t mean garden-variety types that haven’t gotten to know anyone that’s out as gay… I mean the scary types that, even if they’ve been close to you for decades, will become verbally or even physically abusive when they find out. The ones so obsessed with a hateful belief that it overrides even their emotional attachments and rational thought.)

  5. He’s conveniently ignored that contrary to all his ranting, not only was I diagnosed as a preschooler (which was hidden from me), I’ve been up close & personal with autistic kids of all stripes, plaids, & polka dots.

    It seems that for persons like him, it’s easier to ignore the truth than it is to live with the idea that all their assumptions and self pity are based on a false grasp of “reality”. The ability to use oral language and the toilet is a funny axis for the line that determines “really autistic” and “must have been diagnosed Aspergers in adulthood”, especially since those are skills that for a lot of us come and go.

    Gah. Reason number 189038884 that Montana is better than Nebraska…everyone says “oh. Autism. (insert fairly not patronizing story about their kid’s classmate, neighbor, their neice or nephew, whoever here)” if it comes up for whatever reason, and that’s that.

  6. I think moggymania is onto something. People have been trying to reason with Harold Doherty *who is a lawyer of all things* and he never concedes a point, and never seems to learn ANYTHING from discussions, even with Anne B., who is also a lawyer. Mr. Doherty seems dead set on seeing autism in one very narrow, dangerous way, and in demonizing anyone who doesn’t agree with him.

  7. I think that in a lot of these cases, they’re actively refusing to read– or read closely– what autistic people are saying for themselves. They’re afraid to actually read it. They just go off what all the other curebies online are saying Those People Say, and base their “counter-arguments” on that.

    I’ve actually seen this pattern repeated in a lot of online communities– attempting to skew your audience’s view of a group in a certain direction by making broad statements about what “they” supposedly believe and say, and censoring, banning, or refusing to acknowledge any attempt from the misrepresented party to correct the statements, so you have total control of the dialogue at all times. (Although if you actually check out for yourself what “they” are saying, it usually turns out to be nothing like what the “refuters” were claiming it to be. But you’re not supposed to check it out for yourself, of course. You’re supposed to assume that the source is totally reliable and objective and even doing you a favor by sparing you the horrors of having to read the atrociously unreasonable things They have to say.) Although at least in most other groups, people don’t die because someone came out with a “This is what They claim…” invective.

    And yeah, it’s damn frustrating when people refuse to acknowledge our problems because “Asperger’s Syndrome” is the only diagnosis on our record, and all the experts “know” that this means you only have trouble with social communication and signals, so if someone is diagnosed with Asperger’s, any problems with speaking, processing, inertia, etc, are dismissed as not real or as something that could be easily overcome if you wanted to, because Aspies or High-Functioning Autistics or whatever Don’t Have Those Problems. Apparently, where we live, the government services seem to think only three kinds of autistic people exist: Children, Permanently Institutionalized Adults, and High-Functioning Aspie Adults. The latter two groups are assumed to either not need help, or to not be capable of benefitting from it. I guess that’s how the thinking goes, anyway, because there are no programs and assistance that aren’t for children, and our partner got lied to the other day by someone from SSI, when whoever answered the phone put them on the line to someone from Maryland (we live in California), who promptly insisted that “it doesn’t matter what state you’re in, because the programs are the same in every state” and that “we have lots of programs for autistic adults.”

    Apparently, this is a bunch of horseshit, because it was more recently clarified to us by someone actually working at SSI in California that there are no public programs and services for autistic adults in our area whatsoever.

    So it’s just great– we get to try to knock ourselves out to pass all our classes with C’s this semester in order take out more financial aid next semester in order to keep eating. Because the state of California says that speaking autistic adults who need help and who aren’t institutionalized don’t exist. And yeah, this is scary, because we don’t, by a long shot, fit the super academic achiever aspie stereotype, and I know very well from past experience that we can’t necessarily pull out all the stops when pressed into a situation where “you have to pass all your classes in order to keep getting this or that.” Meanwhile, zero support from family, for complicated stupid reasons, because everyone who is in a position to assist us financially is in denial.

    It just really shouldn’t have to be like this. I’m tired of the crap. “You spoke one day and couldn’t speak the next? You must have been FAKING IT on the day you claimed you couldn’t speak, and you can really speak all the time! Because disabilities are CONSTANT! That’s how you can tell who’s faking it!” No, that’s how you can tell you’re talking to someone who doesn’t know a bloody thing about different kinds of disability!

    …grrr, sorry for the rant. It didn’t start out as one, but we’ve had a lot of frustrations lately in the “speech as some great universal indicator of whether an autistic person needs services or not” department.

  8. I posted this comment, FWIW. And if he allows it to publish, no doubt he’ll have an “answer”…
    “Your depiction of the autism advocacy movement is, to say the least, heavily distorted. I don’t know of anyone who urges parents to not educate their children. They are fully aware of the problems related to injurious behavior, etc. But they object to treating autistics like animals–which is, in many cases, what ABA amounts to–training animals to obey their master. They object to trying to make an autistic person conform to a norm that is impossible for autistic people to conform to. We live according to the way that the Master of the Universe made us, and if that way is not what you would choose–neither did we choose, but it is how we are. Conor will never be totally what you want him to be. Guess what? That applies just as much to “normal” children. And normal children also have problems with learning not to run out into the street, and all the rest. But no one sends them to obedience school because of that.

    I’m autistic. I manage in my own way. I don’t deal well with other people. Guess what? I don’t find that a problem, because when I am alone, I’m not alone–I’m in the company of the universe and the Master of the Universe, and better and grander company there can not be. And I have no wish to be anything but what I am, because I recognize that I am me, and not some other person’s wish fulfillment.

    I’m all for helping Conor cope with the world around him, to help him function as independently as possible. I realize that for a lot of Conors that isn’t possible. But whether it is or is not possible for any Conor, there is no excuse for treating them as anything less than a full human being, as a person who is defective–which, unfortunately, is often what your type of “autistic advocacy” turns out to be .”

  9. It just really shouldn’t have to be like this. I’m tired of the crap. “You spoke one day and couldn’t speak the next? You must have been FAKING IT on the day you claimed you couldn’t speak, and you can really speak all the time! Because disabilities are CONSTANT! That’s how you can tell who’s faking it!” No, that’s how you can tell you’re talking to someone who doesn’t know a bloody thing about different kinds of disability!

    Yeah. What I get a lot is people looking at me in one small context and assuming that’s all of what I’m like. So if they look at me a few hours later, or in a different context, and see that my skills are different, or even that I’m just moving slightly differently, and they act like a big to-do is going on, when it’s really they just haven’t observed my natural fluctuations long enough to know what is and is not unusual for me.

  10. I just left a nice long comment over there. We’ll see if he posts it and how he responds. I basically said that I’ve worked with more than 20 kids (ages 2-13 and “mild” through “severe” autism diagnoses) since 1999, as an ABA therapist, a play therapist, a respite worker, and a babysitter, and by and large the happiest kids were the ones who weren’t in ABA programs.

    I used my darling TS as an example – such a bright child, with limited language; I taught her to add double digits in a week of homeschooling, without using ABA, after she’d been left to her own devices at school for a year and a half. I almost wrote a bit about AW, too, but he’s findable over on my blog and I suspect I should write about things I try to get kids to stop doing at some point, as that will definitely include AW.

  11. I almost never write or speak about my personal life (the few times I’ve done this, I’ve hated and regretted it). So all these (public) assumptions have accumulated about my personal characteristics and what I have or haven’t done. E.g., I have an email from an important Canadian ABA litigant which makes assumptions (in graphic detail) about some of my intimate bodily functions and experiences.

    Now, reading this post, I fully (finally, slowly, after a lot of accumulated evidence) understand that even if I had written in detail about my personal life and the less public work I do, and disseminated this all over the place, it would not make any difference. I would still be characterized as an ignorant and malicious person who has no experience of, and does not even acknowledge the existence of, and callously does not care about, major aspects of my own life and work.

    I should have figured it out before, maybe when I put together a long blog post (from stuff I had written previously) about self-injury. At the time, Mr Doherty posted comments in response. He now claims that those who disagree with him deny even the existence of self-injury. As I wrote on my blog, my self-injury has been an issue in more than one legal case (including one that is ongoing at the Canadian Human Rights Tribunal). And my self-injury has been beamed across Canada and around the world via a Radio-Canada TV (and TV5) documentary.

    I’ve been hit by a car too.

    (I don’t know how to do html here so I may have gotten it wrong).

  12. When I was growing up I thought that how and who I was was just because of me. Nobody told me any differently and because I became increasingly withdrawn I never realised completely just how different other people saw me. Then I had my first child, a boy and it became increasingly clear that he was very different from the other children around him. Well, he was diagnosed as being on the spectrum at two years eight months. And because of his diagnosis and the leading up to it I learnt that I am Aspergers and ended up getting my diagnosis last year.
    Now, when I spoke to my mum about the situation, to ask what I had been like as a child, whether she had noticed anything, that’s when she decided to tell me something she’d been keeping from me. The fact that I was different and haddifficulties had been noticeable not only to her and my dad, but to paediatricians, teachers and, well, practically anybody who either worked with children and adolescents or knew me for longer than a couple of meetings. My dad and a couple of paediatricians wanted me assessed. My mum refused and brushed how I was aside as she didn’t want me in a special school. To be honest, I don’t think that would have happened, but my mum’s fears of it happening ensured I was not given a diagnosis of anything until I realised why I am as I am.
    So people who have got their diagnosis as adults haven’t just woken up and thought “hmmm, I’m a bit quirky, what can I label myself with”. If you go through your life not realising just how different you are then until you’re in a position to have it specifically pointed out to you, you don’t know.

  13. Did Mr. Doherty honestly forget the *Autism Safety Training* seminars Alex & I hosted on PEI? The fundraising we did to pull it off? The ongoing work we are doing with PEI’s municipal police, RCMP, Police Academy, Island EMS, Department of Education, Fire Marshall’s Office, Search & Rescue etc etc etc to try and keep Island autistics safe and in case on emergencies, allow for the best possible outcomes? Yeah…. we’re ashamed to admit there’s any safety issues involved here alright….
    You hit the nail on the head Michelle. As did you Yarrow^Amorpha in your 2nd paragraph above.

  14. He didn’t approve a comment I made where I discussed Dr. Gernsbacher work, and how Mr. Doherty fails to acknowledge effective ethical research aimed at actually helping autistic children. I then discussed my son and how my wife and I have helped him get potty trained, etc.

    He did approve a short comment I made correcting a factual error. That’s when he posted the “you’re unable to acknowledge…” comment. My response to that was not approved.

    Mr. Doherty selectively approves comments in a way that appears dishonest to me.

  15. I am glad that you are writing about this subject.

    It is so unfair that a person’s worth as a being is calculated upon what comes out of their mouth. That old phrase, “keep quiet and be thought a fool or open your mouth and remove all doubt” is one that my mother used to say to us when we were kids.

    My son Charlie is very smart, talented, funny, I know this, but in expressive language he is very limited, receptive language is better, but still we are not sure how much he is able to process. Does that make him less of a person, less of a child? Less deserving of being a part of the community? Less in need of love? Send him away to an institution? Over my dead body and then some!

    My child can not communicate as well as a lot of kids and for a long time we felt he would never speak at all. Now he can ask for things that are needs-based, wanting food, wanting to do something, but the deeper things that he wants to get across to us are told to us in his eyes, in the way he presses himself into us for comfort. He leads us along and we follow him and try to understand his language. Because he does have a language all his own.

    He uses physical body cues to show pleasure or displeasure, or even indifference. He uses sounds and some degree of pantomime to show us what he wants. The fact that he has learned our language is so incredible. He truly is bilingual and it’s us that can’t learn HIS language, but we are trying.

    There are things that I wish I knew, what are his dreams like at night? I know he dreams, but what are they like. When he is thinking, what is going through his head? Will we ever know? I wish I was telepathic sometimes.

    But he’s a person with thoughts, feeling, intelligence and love. Even if we never have a “real” conversation at all (as defined in minutia by psychologists and speech therapists), I know that when we are laying together at night and snuggling, or when we play tickle or chase games without using any words there is so much going on that words could never express.

  16. I own / moderate a Google Group Parents-Of-Autism-UK http://groups.google.co.uk/group/Parents-of-Autism-UK?hl=en and added Mr Doherty’s link on :-
    ” Is the Neurodiversity Movement ashamed of the lower functioning members of the autism world ? ”

    http://autisminnb.blogspot.com/2007/02/is-neurodiversity-movement-ashamed-of.html

    I also like to think my group is unbiased ( that’s one of the reasons I created it ) so happily included this BLOG link to the group.

    In principle and based on my own experience of some with AS via internet lists they do tend to almost disregard lower functioning members of the autism spectrum and their parents / carers. This may not be done, in many cases, with any malice, but it would appear Mr Doherty MAY be guilty of the very thing he accuses others of being.

    I say One Autism / One Voice ! It is the only way politicians, agencies and those that hold the purse strings will ever listen to the needs of ALL those affected by Autism.

  17. Chris,

    I think part of the problem that you’re talking about is that some of the adults we meet online used to be those “lower functioning” autistic children. They still have struggles, and some of them are much the same as those they faced as children. I think we can forget about that because (in my experience) they don’t often talk about the struggles they face, and they are often very good at communicating via the written word.

    I do, however, think that Amanda is a very good example of someone who is an incredible communicator but who qualifies as one of those “low functioning” autistic people. I know that it takes a lot of effort for her to make these blog posts, and that she expends the effort because she thinks it is important to give out the information. That’s why she did the CNN piece. I’ve known her for a number of years (online) and have always been impressed by her honesty about her own situation.

    I myself have ADHD. I don’t consider it to be a disorder; it’s part of who I am and how I am – how I relate to the world, and how I think. Some people have more difficulties in their lives because of ADHD; others have less. I suspect I’m somewhere in the middle. But we can all relate to each other in some way, because we all face the same kinds of difficulties in life – they just might be more severe for some than for others.

    I think that is likely very true for autistic people, as well. I suspect that “low functioning” autistic people and “high functioning” autistic people both face the same kinds of difficulties – the only difference is the severity of those difficulties.

  18. It’s “such a tragedy” when some of us can’t speak (or some of us can’t speak some of the time, which I guess is seen not as a tragedy but as some sort of malingering). But the same people who wish desperately that we could talk… when we DO talk and they don’t like what we say, want to shut us up as fast as possible. It makes me wonder about the motivations of these people. I am not at all sure what the motivations are, or could be, when someone says they want something but want it ONLY their way.

  19. Reblogged this on Louellena's and commented:
    Exactly what’s happened/is happening in NB. ABA (specifically Lovaas – DDT) is encouraged as the only ‘scientifically proven to be effective’ method for dealing with those diagnosed. And guess what? The only parent/caregiver course for dealing with autism is – ABA-based.

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