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    #214936 04/25/15 12:04 PM
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    This topic has come up in multiple threads now, and (at least in my opinion) the number of posts that tend to come up in response can have the effect of derailing the original thread. So I'm creating this one as a place where we can discuss the neurodiversity movement without taking over threads where others are discussing other issues. If it comes up in another thread with a different focus, people can always just point to this one.

    The wikipedia link above is a reasonable place to start if you don't know about this already. The concept of neurodiversity was introduced in the context of autism, but it has been expanded to include ADHD, bipolar disorder, and other mental health conditions. In a nutshell, it boils down to the idea that these diagnoses are not medical disorders that should be cured, but part of normal human variation that should be accommodated.

    In the context of autism, one consequence of this outlook is that it has suggested that applied behavior analysis is unethical, because it is often used to try to extinguish behavior (e.g., stimming) simply because makes neurotypical people uncomfortable. On the other hand, ABA is possibly the most effective intervention to treat autism (if you accept the medical model that autism needs to be treated at all), and those on that side of the debate argue that it is therefore unethical not to use it.

    By definition, the kids on this board who are autistic are also gifted. As such, they are more likely to end up on the side of "stop trying to change us, and change yourselves to be able to accommodate us, instead" than low-functioning individuals, who are rarely granted enough agency to reach that conclusion. We may also have a higher proportion of kids who don't fit autistic stereotypes in one way or another (for example, children who do not stim, children who do not line up their toys by size, or children who engage in some imaginative play).

    What are others' thoughts about neurodiversity? It is harder to find articles or discussion on it in the context of ADHD or other disorders than it is for autism. Is that because it's not really applicable to those disorders, or just that those movements are less well-developed?

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    Hi Elizabeth,

    In general I'm not a fan of strident rhetoric. Parts of the ND movement are too "hot" for me. Then again, lots of people have huge reasons to be angry, and I respect that. And the "nothing about us without us" reasoning articulated by ND advocates holds true for me-- autistic people should have the right to help determine what needs they have and what will help them best.

    I am a fan of ABA-- it worked wonderful for us and has made possible tremendous personal growth for DS. That said, there have been a few times when I had to overrule our (otherwise good) practitioners who were dead wrong about what was good for DS's learning. I think there are good and bad practitioners and that it's really important to consider all the human and affective dimensions of learning.

    DS has found the ND perspective helpful in articulating that there's nothing "wrong" with him. (Can you imagine sitting in a school assembly where the speaker is telling everyone how awful autism is, and we should raise money for the poor autistics-- and you have it?) He's now the guy who can politely challenge the speaker on that point.

    I think the basic principle of presuming competence-- that is, not writing someone off because they are disabled-- should apply to all people with disabilities, not just autism. I do think that the ND movement is helping to articulate a major civil rights movement for our time. With this I can make common cause, at least sometimes.

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    I think part of the problem is that autism now seems to encompass any behavior that is "quirky" or somewhat unusual, when by definition it should only be used to classify people who are having significant problems functioning. So if someone is so mildly affected that they improve on their own, or with minimal assistance, or have only mild problems functioning, do they really have autism? Maybe they are just on one side of the normal curve in terms of social skills, sensory issues, etc. Someone has to be in the bottom 5-10 percentile for every personality trait--it doesn't mean there is a disorder.

    I look at my DS and if someone really wanted to, they could probably classify him as having Aspergers. He has difficulty with making friends, he has some quirkiness like unusual interests, prosody of voice, lack of eye contact with strangers, etc. However, he is also very laid back, has never had any rigid interests, no major sensory issues, etc. But just based on some of that superficial stuff, I can tell that some people are wondering about that when they first lay eyes on him. When we had a neuropsych eval a couple years ago, the doc stated that he thinks autism/aspergers are way over-diagnosed and a lot of people who are diagnosed do not really fit the criteria. And there IS research stating that a high percentage of young children/toddlers who are diagnosed no longer fit the criteria a couple years later. Autism is something that is life-long, it's not a temporary phase. If someone is able to "outgrow" it, then I would argue it was never there at all.

    I think the "spectrum" confuses everything so that those who are so mildly affected that they really do not need anything special are lumped in with those who need major assistance. It's all still "ASD". It's not really fair to the people who actually are impaired and really do need some major interventions. Autism CAN be devastating to families, and when there are people claiming it is not that big of a deal, it's just a normal variation, I can imagine that is highly offensive to people who struggle every day, are trying to get treatments, and need a lot of help. Maybe it should be broken down into groups of severity like category 1, 2, 3, etc.


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    As it happens, blackcat, the new DSM-5 does group disorders into degree of severity--or, rather, degree of support necessary to function.

    A few thoughts: In general, I view the key element to disorder-vs-diversity as being pathology, by which I mean, the extent to which the profile interferes with major life functions (including the subjective happiness and well-being of the individual concerned). If there is something about the profile which impairs that person's capacity to live a full and satisfying life without significant support, then I think we are entering the realm of pathology.

    Of course, we all have to make accommodations to other people; no man is an island, after all. Perhaps support becomes significant when the environment has to make modifications to suit an individual that are disproportionate compared to those made for the other members of the community.


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    DeeDee #214954 04/25/15 05:12 PM
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    Originally Posted by aeh
    If there is something about the profile which impairs that person's capacity to live a full and satisfying life without significant support, then I think we are entering the realm of pathology.
    ...
    Perhaps support becomes significant when the environment has to make modifications to suit an individual that are disproportionate compared to those made for the other members of the community.


    This suggests that autism is community dependent - an individual in one culture may not "have" it any more when they move to a different culture that fits them better. That seems a little strange for a "disorder" - I mean, you don't suddenly stop having a sprained ankle because you move from Chicago to Cambodia. Or a brain injury.

    Originally Posted by DeeDee
    Can you imagine sitting in a school assembly where the speaker is telling everyone how awful autism is, and we should raise money for the poor autistics-- and you have it?)


    Yes, I can imagine that - but I don't really want to. eek I'm sorry that that happened to your son, and I'm glad that he is able to challenge such things now.

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    Originally Posted by ElizabethN
    Originally Posted by aeh
    If there is something about the profile which impairs that person's capacity to live a full and satisfying life without significant support, then I think we are entering the realm of pathology.
    ...
    Perhaps support becomes significant when the environment has to make modifications to suit an individual that are disproportionate compared to those made for the other members of the community.


    This suggests that autism is community dependent - an individual in one culture may not "have" it any more when they move to a different culture that fits them better. That seems a little strange for a "disorder" - I mean, you don't suddenly stop having a sprained ankle because you move from Chicago to Cambodia. Or a brain injury.
    Actually, that's my point. Those on the top end of many conditions that we could consider spectrum disorders (e.g., ASD, ADHD) may not be functionally impaired in a setting that is a better fit for them. One could even make the argument that some mildly intellectually-impaired individuals evince minimal functional impairment in certain societies or segments of societies. I am not suggesting that the personal profile is different in different settings, just that the degree of impairment may become more or less significant. Our diagnostic criteria are arbitrary. These are not syndromes for which there are clear physical or biochemical tests. Don't forget that the DSM has historically been a consensus document, with criteria developed by expert opinion, not a deep body of objective quantitative research. Attempts to attach some objectivity have been of fairly recent origin.


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    blackcat #214961 04/25/15 06:19 PM
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    Originally Posted by blackcat
    And there IS research stating that a high percentage of young children/toddlers who are diagnosed no longer fit the criteria a couple years later.

    It's not a high percentage. It's some. The ones with higher IQ do have a much better chance of not needing the diagnosis later.

    Some ND advocates argue that these cases result from parental suppression of autistic traits. Even if someone seems "normal" they may be working very hard to maintain appearances. How it's experienced is also important.

    Originally Posted by blackcat
    It's not really fair to the people who actually are impaired and really do need some major interventions. Autism CAN be devastating to families, and when there are people claiming it is not that big of a deal, it's just a normal variation, I can imagine that is highly offensive to people who struggle every day, are trying to get treatments, and need a lot of help. Maybe it should be broken down into groups of severity like category 1, 2, 3, etc.

    I would never argue that it's not a big deal-- only that calling the existence of some people "a tragedy for their families" is mean and harmful, compounding the difficulty of the disability itself.

    One thing that I think many sensible people can agree on is that there's a lot of research into biological "cures" but not a lot of money spent on supporting people with autism and their families. Whether one needs small or large supports, outcomes are best among the affluent who can pay for those supports because they're often hard to get otherwise. This should change.

    aeh #214962 04/25/15 06:22 PM
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    Originally Posted by aeh
    In general, I view the key element to disorder-vs-diversity as being pathology, by which I mean, the extent to which the profile interferes with major life functions (including the subjective happiness and well-being of the individual concerned). If there is something about the profile which impairs that person's capacity to live a full and satisfying life without significant support, then I think we are entering the realm of pathology.

    This matches my own experiences very well, and it's similar to my own working definition. Well put.

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    Originally Posted by ElizabethN
    Originally Posted by DeeDee
    Can you imagine sitting in a school assembly where the speaker is telling everyone how awful autism is, and we should raise money for the poor autistics-- and you have it?)


    Yes, I can imagine that - but I don't really want to. eek I'm sorry that that happened to your son, and I'm glad that he is able to challenge such things now.

    Actually, it turned into a very funny situation; the speaker had no clue what DS was talking about for a bit (he raised his hand and was called on...), and DS was quite clear about what autism isn't.

    One of our school allies emailed me afterward-- she was so proud of DS for speaking up in a calm and humorous way, and so am I. :-)

    If you've got to be different, might as well be different with style.

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    One of my favourite movie lines is this one from Fantastic Mr. Fox, in which Mrs. Fox addresses her son about feeling different: "we're all different, but there's something kind of fantastic about that."


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