Tuesday, November 10, 2009

False Despair

What would be the value of telling a parent of a recently diagnosed autistic child that the child will never be able to hold a job, if this is unlikely to be true for a good majority of autistic children diagnosed at present? Is there any? I just don't see it. In fact, I think this would be at least as harmful as telling a parent that their child will grow up to be just like Dr. Temple Grandin.

I was recently told that I shouldn't divulge data that could be interpreted as painting a "rosy picture" of autism. It's not only rude to tell people what they should or shouldn't write about, but this kind of suggestion is quite unreasonable in my view.

Beyond the merits of the idea that it's best to presume competence, I believe one should have realistic expectations based on actual data, rather than vague assumptions based on stereotypes and outdated information of unclear origin.

I also think it's highly questionable to dismiss new findings solely on the basis that they "don't feel right" or because they fail to confirm one's preconceptions and personal experience. This is the very definition of closed-mindedness. (A lot of people seem to think "closed-mindedness" means you are not willing to accept pseudo-scientific claims, but this is simply not true.)

It's important that data is current too. It would be completely dishonest to pretend that autistic children diagnosed today are just like the children who were called autistic in, say, the 1960s. That's simply not a realistic view. I have discussed adult outcome studies in the past, and I think they are relevant, but they need to be understood in their proper context. For example, 61% of autistics born in 1983-1985 receiving services under the autism category in California were identified as having intellectual impairments. Meanwhile, only 27% of those born in 1993-1995 are identified the same say (Gernsbacher et al. 2005; The MIND Institute 2002.) This is despite the fact that California DDS has eligibility restrictions, sometimes interpreted to mean that only persons with "full syndrome" autism are eligible (which is probably an untrue assumption, but it's also the case that not all persons with an ASD diagnosis are necessarily eligible.)

I say this knowing full well that my own son is different to most autistic children diagnosed today, and perhaps more like children who were called autistic in the 1960s. I expect my readers to be similarly capable of distinguishing personal realities from population-level realities. If I divulge data applicable to autistics who don't have intellectual disability, and you have an autistic child with intellectual disability, then the data does not apply to your situation. I think this should go without saying.

If you look at really good paper critiques, you will find a common characteristic: They don't just point out limitations and errors; they explain how the limitations and errors could make the results what they are, in the event that the hypothesis the authors have advanced is incorrect. This typically involves pointing out details the authors have apparently overlooked. For examples of remarkably good paper critiques, see the Photon in the Darkness Blog.

Then you have really poor paper critiques. These come in various flavors. Perhaps the lowest form of critique is the ad hominem circumstantial, otherwise known as an appeal to motive: "I suspect the author is biased, therefore the results of the paper are probably wrong." This is essentially a useless critique, since all authors of all papers could be suspected of having a bias. Some additional criteria is required to make it worthwhile. For example, if a researcher is known to have engaged in substantial scientific misconduct (e.g. plagiarism), then it is reasonable to hold all subsequent works by the same author to be suspect a priori. It would also help to explain how the bias might alter the results. In a hypothetical case, it could be reasonable to speculate along these lines: "Since the study was not blinded, it's probable that researcher bias could have inadvertently altered the results of the assessments." This is a plausible explanation, as opposed to a simplistic insinuation.

Another precarious form of critique is what I'll call the critique by anecdote or personal experience. Example # 1: "How could this global warming theory be true? It was really cold this winter." Example # 2: "I have never seen any autistic adults, and I know 'em when I see 'em, so this really expensive and exhaustive prevalence study just cannot be right."

BTW, how is it that David Kirby knows 'em when he sees 'em, if he's never seen them at all?

There are some reasonable forms of critique that don't require much effort. Appealing to the unreplicated status of a result is one example. This is a good convention that is part of the scientific method. "The result could be of interest, but let's reserve judgment until it's replicated."

Some people have said they don't yet buy the prevalence result from the NHS study because the study is unreplicated. In this particular case, I believe they are mistaken. For one, there's considerable prior evidence that autism can be found in various populations of adults where previously it was largely unrecognized. Furthermore, Kadesjö et al (1999) found a prevalence of 1.21% among children born in 1985 in the small town of Karlstad, Sweden. The "children" happen to be 24 now. If the study were done today, on the same exact cohort, it would be considered an adult prevalence study. In this sense, the NHS study may be considered a replication.

Let me make this clear. There's simply no excuse to continue to claim that autistic adults are a non-significant population compared to the population of autistic children. Doing so is just another form of denialism.

16 comments:

  1. I think having an open mind about individuals is the best way to confront the development situation with children who have autism, because it depends on so many factors that no one can really predict how things will turn out later. :) I agree with you that it's rude to tell people what to write. People have a choice to read all opinions, studies, articles, etc. and weigh all information. It's good to have both sides and find a place that's comfortable for the individual and family. What do you think?

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  2. "I believe one should have realistic expectations based on actual data, rather than vague assumptions based on stereotypes and outdated information of unclear origin."

    Getting into the anecdotal: When my first son was diagnosed, the doctor gave us a doomsday prognosis. "Never talk... never practice pretend play... never attend school with his peers... never live independently...belongs in an instititution."

    The son who received this prognosis now speaks (almost at grade level), he's mainstreamed in school, he practices pretend play, and does many other things the doctor said he never would.

    Now, I could relate this information and "prove" the prediction that he and others like him will not hold jobs is false.

    Honestly, though, I have two other children with diagnoses of autism. They weren't given prognoses. Their doctors has the integrity to admit that there was no way to determine what kind or how much progress they would make in their development. Neither has achieved the kind of "success" that their older brother has, and it's not just a difference in years. And yet, as far behind as they are now, their futures are undetermined and statistically undeterminable.

    Personally, I think trying to predict what this generation of autistic children will face as adults is a rather futile effort. Not only has the diagnostic criteria changed, but treatments, understanding, and awareness has changed to a great degree. I expect that change to continue. With a landscape that is changing so significantly, it's not reasonable to try to project the outcome of current adults into the future--there are simply too many unknown variables and too many ways for cumulative effect to shift the outcome.

    Using one's personal weather to refute global warming claims may not be valid; but retaining skepticism regarding the validity of the values and assumptions of global warming models is.

    Some outcomes just aren't predictable with the data available.

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  3. Randomly stumbled across your blog and I must say I definitely applaud you for it. I ended up in some posts from 2006 and you acted magnanimously towards the asshats commenting and insulting (both you and other commenters).

    As relating to this post, I highly agree with you there's no reason to approach a new diagnosis of Autism with all the associated gloom and doom because the child will never "be anything" (or whatever dreadful terms some people use). Obnoxious over the top, way too enthusiastic, self-help motivational speakers aside (you know the kind), there have been plenty of studies on the effects of one's mindset when facing any kind of adversity, be it a cancer diagnosis or even doing the dishes if you're heavily depressed. Not to say one should live in denial and act as though all is roses and sunshine while eschewing things like treatments, but a positive-ish approach will help everyone involved.

    {If you're curious, for statistical purposes and whatnot (I noticed the poll to the right), I'm a psychologist who had dreams of becoming a psychiatrist (I have a fascination with all things biological/scientific) before Lupus "ate my brain" (a term some of us use endearingly to describe the cognitive decline sometimes experienced) and my body said no way to any added stressors (which, you know, med school would have been ;) ). I don't have Autism myself although I do suspect I float about the spectrum, even if at the AS fringe, but because my father's opinion was people in our family "just don't have problems", suggestions for different evaluations by school officials were ignored and I managed to perform relatively well despite certain issues thanks to kind g&t teachers who were able to quietly make certain accommodations in the classroom setting so I was able to understand. (Not all students are so lucky, a fact I am very much aware of and deeply thankful for to this day.) College, however, as I was left to my own devices, was another story. I barely graduated, again, thanks to kind professors to realised I was genuinely struggling and did their best to present the material in my "language". I'm going back to get a second bachelors and later masters for education (I'd like to teach and be able to "return the favour" my teachers gave me by reaching out to my own "special-needs" students (on whatever broad landscape that phrase paints). Thankfully, I'm wiser now, put on my big girl pants, gotten over the stigma to get help (which I know I should "know better", given my background) and have registered with the disability group on campus. These days though, I spend the little extra emotional energy in therapy for I have on my own mental illness (namely, severe depression, which effects do have a larger negative impact on my functioning) and for now consider my possible AS as yet another of my adorable quirks. :) I don't have children myself, nor do my husband and I plan to have any in the future because we'd rather not pass along certain genetic traits and the constant disruption children can cause in one's daily schedule is slightly terrifying for us. However, because I have friends and have known people with Autism all over the spectrum and some of my close friends are diagnosed Aspies, I take an interest in the area and keep the patients and their families in my heart.

    {Apologies, I often talk entirely too much if about a subject of interest. All that rambling said, thank you for the amazing blog and more than likely I'll be following along quietly. :)}

    S

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  4. This comment has been removed by a blog administrator.

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  6. OT and for what it's worth:

    just posted to Zachary's blog and three times i've got a moderation notice!

    he's alive?

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  7. Looks like Zack has enabled comment moderation because of John Best. It's not difficult to imagine what John was telling him.

    As for Zack, I don't know how to help him. Do you have any ideas, David? I'm guessing he's already been talking to professionals. I'm not sure talking to his readers helps.

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  8. "Looks like Zack has enabled comment moderation because of John Best. It's not difficult to imagine what John was telling him."

    He always had comment mod, probably because of that bastard Best, and it's back now because he's yet another person who's put a ban on the New Hampshire Turd. And indeed it's not hard to imagine: when Best thought Zack was dead, we got to see what his plan was.

    "As for Zack, I don't know how to help him. Do you have any ideas, David? I'm guessing he's already been talking to professionals. I'm not sure talking to his readers helps."

    I'm hoping he's talking to professionals but there's a whole load going on there alongside the autism stuff, and that needs a lot of supports too. As for what specifics, I couldn't say without having a long time to talk with him and people he knows and who know him. But I'd say that his situation would need a lot of intensive work. And collaborations from a lot of people and professions.

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  9. "But I'd say that his situation would need a lot of intensive work. And collaborations from a lot of people and professions."

    And it looks like these things are STILL not happening.

    Something's fucking up in Kalamazoo, Missouri!

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  10. Did these studies say what TYPE of employment they are in? We know that autistic people do well in certain types of employment and horrible in others so I'm curious if this was mentioned.

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  11. @Stephanie: No. But there's a separate analysis on income. While the authors didn't find the differences to be statistically significant, there's a trend that looks pretty undeniable: Autistics tend to have lower income.

    Undoubtedly, autistics probably take jobs that someone with their same level of intelligence wouldn't normally have.

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  12. Kalamazoo, Michigan....

    with apologies to the Missouri-ites and an extra helping of bollocking to the Michigan administrators: your fingers out of your arses and provide some proper bloody supports for people!

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  13. Theo here under anonymos. I concur! MO has yet a long way to go, but at least out here in SW MO we have TouchPoint, Judevine, and Burrel! And thankyfully Burrell provides help with mental illness issues as well as autism. My physcologist helps both with my AS and with the PTSD. It blows my mind that as backwater, hillbilly, backwoods as Southwest MO is, we have more supports than Michigan! He needs (Zack) to get out of there, if only for a while, ang et to a place were he can get some REAL help!!

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  14. This is a great blog. From what I have read so far, people contribute to the site along three broad categorizations:

    1. "It's not actually that bad"
    2. "oh, poor me"
    3. Somewhere in between 1 and 2

    Whether autism has touched your life or not, from my experience peoples views on their circumstances can always be categorized under one of these three headings. I am contributing under heading 1.

    My son was diagnosed with autism at three, was re-diagnosed with language disorder at 4 and now, at 6, autism spectrum is being bandied about again.

    Whatever it is, I believe he will be fine and I believe it is right to have a positive attitude about the eventual outcome. He will have difficulties to overcome at school, socially and possibly into adulthood but he will learn and adapt to overcome them. We will support him with everything we have along the way. Mostly our love. I believe he will end up with a big personality.

    Both my father and grandfather spent time in a mental institutions. My father has bi-polar disorder and while we've no idea what my grandfather's diagnosis was, it's quite possible they both had personality traits similar to that of my son when they were young and these manifested themselves in manic depression later in life.

    My grandfather especially found it difficult to live with people. We often wonder how he managed to father seven kids when he never spent any time with our grandmother. The cleaners he hired rarely stayed longer than a few months at because they couldn't put up with his lack of regard for them.

    My grandfather died in 1986 and since I was in my twenties I have been trying to live up to him. He had a very different personality than most of society and one that caused him no end of grief when he was alive and resulted in him living alone for most of his life. But everyone knew him. If they didn't like him when he was alive they grew to like the memory of him after he had died. He was a bookmaker and greyhound breeder and trainer. He was admired for his ability to judge a greyhound's propensity for speed and this admiration is now matched only by fondness for the memories of his eccentricities.

    The medication my father now takes keeps him out of the various instutions he would attend or be forced to attend before he better came to terms with his circumstances. But he still has his issues. He argues with everyone, becomes engrossed in a topic for months on end to the point that it puts people off and he has difficults emphathising with other people's feelings. He's aware he's like this but if you asked him to change his personality, he wouldn't. He likes who he is. If he was to write on this blog I'm pretty sure he would write that HE is the lucky one and that it is unfortunate that most of its readers will lack the personality attributes required to understand the insights that regularly decend on him.

    I've got my own peculiarities but as I head on the road for forty it looks like the character traits that led my father and grandfather to be so different have for the most part by-passed me. I am grateful in one sense. I'm not sure I want to experience any more than an armchair view of the roller coaster rides they have lived. By another metric though, I will regret the fact that my personality is small and their's was big. They will be remembered; I won't be. In the normal distribution of life, I landed somewhere near the mean; they were outliers. They rode the roller coaster; I didn't.

    As parents we'll do our best to smooth the peaks and troughs our son has ahead of him. There is no doubt there will be many things he will not be able to do as well as his peers but he will eventually find his personality and eventually find the confidence to expose it to the world.

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  15. "False Despair" - just to bring this back to the original article... falls under the rubric "self-fulfilling prophesy." Sometimes I truly despair of professionals! as gate-keepers, if they decide a person can't do something, that person does not get the opportunity to even try, and, lo and behold: they cannot do it!

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  16. I think perhaps one of the best determiners of future success is parental support. I confess, however, that I'm speaking purely anecdotally with a sample size of one: myself. I was born in 1967 with Asperger's and, of course, undiagnosed (despite being taken to professionals from the age of 5 to 15.) My father became distracted from parenting when my older brother died from cancer and my mother gave up on me so early I can't pinpoint where she let despair take over. It definitely became crystallized, however, when I was nine years old and she became pregnant with another child.

    All her hopes and dreams were pinned to the new child -- so clearly that even I could see it and used to have nightmares about it. For the next five years there was a growing sentiment of "keep her away from the new one" as if I could somehow corrupt or infect my younger sister with my "badness" (which was my final "diagnosis" since nothing in the books at the time matched my behavior.)

    I was strategically edged out of the nest early, partially under the guise of "tough love" and partially through freezing me out so much that I would feel compelled to leave and thus could be blamed entirely for the decision -- surely another manifestation of my badness -- and my mother could claim zero responsibility for driving me away.

    I struggled greatly, trying to survive with no skills as a high school drop-out (the bullying had become so intense and violent that I left in fear of my life) and socially clueless. I spent the next decade alternating between bouncing from minimum-wage job to minimum-wage job (I'd never last more than two weeks and, to the day, I can't figure out what I was fired for) and being taken advantage of by men who saw my desperation and offered shelter (that came with harsh strings.)

    Through all this, when I dared try to turn to my mother, I got "you are an adult and you make your own choices and now you have to learn to live with them."

    When I think on what my prospects would have been with a proper diagnosis (I finally got one nine years ago at age 34 and it has quite literally turned my life around) and with proper parental support, I see a completely different life. One with plenty of frustrations and difficulties, of course, but one where I could have been home-schooled or moved to a more sheltered high school environment and made it into college, probably while still living with my parents, graduated, and had the assistance of loving family in trying to find a place in this world where my talents and (to be blunt rather than feign modesty) considerable intelligence could be put to productive use rather than wasted during years of punctuated homelessness and abuse.

    So . . . to use Charlie's categories, this is both a "oh, poor me" (though I don't feel that way. I feel like the strongest woman in the world who has survived a world of shit and is still pushing forward with life, finally in university (working on a doctorate, actually), growing to understand herself better (with great assistance from finally getting an accurate diagnosis), and looking forward to a future much brighter than anyone, including herself, would have predicted for her)AND an "it's not actually that bad" because it's not . . . but a lot of that depends on the attitudes and personal resources of parents.

    You parents out there: never underestimate the importance of what you are doing, of what you can do for your child. You are the rock that has been the anchor of their life since before they were born. Never give up on your child.

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