Saturday, October 13, 2007

How Did Neurodiversity Win You Over?

Quick informal survey: How did neurodiversity/acceptance win you over? This question goes for parents, those on the spectrum and anyone else who sympathizes with the philosophy.

Clearly, we didn't all start out embracing the concept or even being aware of it. I think this is true of almost all parents, even those parents like me who are themselves on the spectrum.

For me, at first, I think it was interacting with others on the spectrum and reading what they had to say, and even arguing with them. Much has happened since then, and my views have continued to evolve, but in the very beginning, I think that was key.

In my view, those in the neurodiversity movement tend to be flexible and critical thinkers, who are ready to revise their views in light of new indisputable information. This is a generalization, of course, but a strangely consistent one if you consider the polarization of skeptical thinkers vs. anecdotal thinkers in the autism community. I can't explain it.

It also appears to be the case that parents go from being curebies to embracing acceptance, but I've not once heard of a parent going the other way.

21 comments:

  1. combination of personal experience in how an autistic person is treated when they are NOT accepted, a disgust of how people take advantage of others, simple common sense, knowing autism doesn't equal devastation, and outspoken people in the neurodiversity movement such as yourself...

    ReplyDelete
  2. I think for me, it was attending a course to learn strategies to aid Andrew in communicating(Hanen program, More than Words) and listening to how angry the parents were regarding their child's diagnosis. They were ranting about cause, cure, vaccinations and such and I remember thinking "but what about that little person you have there? How is all this anger helping them to become everything they can be?" I started seeking out like minded individuals, and found the Autism Hub. Reading what other parents who felt as I did and reading blogs from autistic individuals was inspiring to me. People who didn't see autism as something to be devastated over. People who embraced the person their child was. Autistic individuals that were happy and happy with who they were. That was what attracted me to neurodiversity.

    ReplyDelete
  3. I hadn't really thought about the problems of bias against people who think differently. I knew I had been bullied over and over through my life, but I just thought in terms of the bullies being mean and my being a target for some reason because I'm not "normal".

    I hadn't thought too much about the benefits of having lots of different kinds of minds, though I had heard, for instance that bipolar people had gifts that could be part of their disorder. I knew it was wrong to be biased against disabled people (my father was disabled, one of my kids was totally obviously disabled, I didn't realize that my weirdness and social ineptitude, sensitive hearing, stimming, lack of eye contact, etc, could be considered a disability). But Neurodiversity really hit me as a new idea and opened up the ability to see this category of prejudice and the solution for it. That is, the problem is bias against the mentally ill and developmentally disabled. It is a huge problem, and it is as serious as bias against ethnic groups or religious groups, or the obviously physically handicapped, etc. The "cure" for this kind of bias against "neuro-types" is acceptance that not everyone's brain is the same. And the answer is not to eliminate the brain types we don't want to have around by way of draconian measures.

    Neurodiversity confers humanity the same benefits as ethnic diversity and biological diversity. I realize being a certain ethnicity is never a "disease" or "disorder", but the edges of the definition of "disorder" is so fuzzy that if one agrees that a kind of brain is disposable, then one will try to remove that brain from existence (stamp it out, cure it), then one will merely move on to another disorder and another to the point where something brain based, like left-handedness will be seen as something to be eliminated.

    Whoever is in power will decide that they are the normal and the necessary kind to keep, and they will decide who needs to be eliminated.

    So no one is safe if the goal is neuro-uniformity. Everyone is more or less safe if the goal is supporting a great amount of brain variation, i.e. "neurodiversity."

    ReplyDelete
  4. uFor me it was a two-sided process.
    I had a young son Dx'd with autism. I had another young son who was developing very typically. My wife was pregnant. I intended to do the necessary research to figure out whether or not to vaccinate our baby since I had heard of the connection.
    I asked some people I knoew who worked in medicine. I found PubMed. I joined EOHarm (though I never read the book). I found the Hub. I vascillated for a couple of months, in which time I found that the greater share of intelligence, compassion, whole-person thinking, realism, and optimism all emanated from the ND side. Done deal ever since.

    ReplyDelete
  5. I wish I had a clear intellectual answer to this great question, but in reality I was initially attracted by all the perks, you know: the free upgrades to first class on most airlines for members of the neurodiverse, the 50% discount on internet access, and the double shots at Starbucks. Of course my take on the situation has matured, I could even live without the monthly complimentary steak dinners - if I had to. Now, I think what really keeps me is pretty much summed up by what you wrote:

    "In my view, those in the neurodiversity movement tend to be flexible and critical thinkers, who are ready to revise their views in light of new indisputable information. This is a generalization, of course, but a strangely consistent one if you consider the polarization of skeptical thinkers vs. anecdotal thinkers in the autism community."

    Of course the absence of negative references to my children within neurodiversity helps a lot too.
    Neurodiversity is cognizant of ethics, reality, and best positioned as a philosophy to benefit my children.

    ReplyDelete
  6. I never wanted the bully who said "You fail everything" to get it right, curebies said he were, neurodiversity said he wasn't.

    I have always felt that my uniqueness have been part of my identity, even before I got a diagnosis, and when identities feel threatened, they often grow stronger in pride.

    I have to admit that i was abit attracted to the "we against them" and "we have superior minds" mentalities found sometimes at AFF. While I now have matured more and consider myself very critical to people who encourage the extremes of those mentalities.

    ReplyDelete
  7. Great answers so far everyone.

    D'oC - And don't forget those Big Pharma checks. Pay-per-comment really makes a big difference :)

    ReplyDelete
  8. Neurodiversity taught me that my obsessive golfing fixation was just a difference and that I should take pride in skipping out of work to pursue my difference. Now I can diagnose myself with Golfing Asperger's and sue my boss if he tries to make me work on sunny days. So, thanks for that little scam.

    ReplyDelete
  9. I can't think of an exact time when I was "won over".

    When my son was dx he was older (4 yrs old) and we had been dealing with what "they" called "severe autistic behaviours" for those four years. But all along, to me, they were just Patrick. So acceptance ALMOST came before diagnosis. I won't say I didn't have any moments of tears or "why me" or "how can I fix this" but they were sporadic and didn't last very long (and thankfully I didn't act on them).

    I did a big of reading online, came accross some curbie stuff that left a bad taste in my mouth and then found the HUB. It felt like home.

    ReplyDelete
  10. It took a while. Several years in fact.

    Many of the more vapid accusations against behavior analysis turned me off at first.

    In addition the early days (pre hub) the quality of science based arguments that I see now, really just wasn't there, except for a handful of folks.

    Probably it was my blog that did it. I was called an ND by others long before I called myself it. I will go into more detail on my own blog.

    ReplyDelete
  11. Michelle is very persuasive (and brilliant if she doesn't mind) isn't her?

    ReplyDelete
  12. Like mumkeepingsane, I think the acceptance came before the diagnosis. Perhaps it is the fact that my child was born at 27 weeks and had the deck stacked against him from the get-go. I just decided it didn't matter; he is who he is and he can do whatever he sets his mind and heart to. Why on earth would I want to "cure" him of that which makes him so incredibly beautiful and unique?

    ReplyDelete
  13. After the dx I was one determined Mom out to cure her son. I read and read and read. Some of the recommendations sounded - well wacky - and dangerous. I didn't want to subject my son to anything unproven. He had enough stuff on his plate. We did a battery of tests, commenced with the (always fun) IEP process, enrolled in occupational and pyschotherapy. At the same time, I was reading about the Vaccine Court (that was some riveting reading there) and stumbled upon Autism Diva's blog. I was outraged by her writing. How could someone kick us when we were down, I thought. I couldn't believe it! I wanted to argue with her but...she was making sense, a lot of sense. And I started to read other blogs linked on her site. And the others made sense too! Finally I discovered Aspies for Freedom and it was like the scales fell from my eyes. I had always loved and appreciated my son for who he was and I realised that his challenges and differences were a part of what makes him such a great kid today. So thank you Autism Diva and AFF and everyone else who embraces nuerodiversity. I like this community :)
    BTW, where can I sign up for the card that gets me all the perks (that made my day D'OC).

    ReplyDelete
  14. When I was told of my diagnosis I was quite angry and perplexed by some of the AS "symptoms" as they were told to me. Why on earth is having strong interests part of a disorder, I thought. It sounded completely absurd and insulting--as though there were something inherently wrong with the way I was. It didn't sit well with me at all and for around a year I more or less forgot about AS/autism. Then I became interested in my diagnosis again, and I was delighted to find people who indeed agreed that AS/autism is a difference but not a defect. Difference should be accommodated, not "fixed." Discovering neurodiversity was empowering for me.

    ReplyDelete
  15. Funny you should ask that question since I've been having an epiphany about the fact that I have indeed been won over by the neurodiverse. First, pretty much everything I read about cures and treatments for recovery never passed the basic human biology smell test. Second, I just didn't buy that people who talked about autistic children's brains being rotted out and were so vile to any who disagreed with them really had my children's best interests at heart. Third, I was never devastated by my children's diagnosis and my world did not come crashing down around me. I got tired of reading that I should have been. Fourth, I knew that my kids were going to grow up to be responsible adults and I needed to find people who would acknowledge that.

    Along the way I had to accept that my job as a wife and mother would be a bit more difficult than I would have first thought. My greatest problems turned out to be my expectations.

    There's more to it but I haven't worked it all out yet.

    ReplyDelete
  16. I am someone who has always been told that I have a lot of intellectual positives, but I've always been very aware of areas of great weakness. After much research, I've decided that it is a matter of unbalanced development, some areas becoming unusually strong and other areas remaining weaker. This leads me to believe that there is no way to 'cure' me without changing something fundamental about how I see the world. This has led me to embrace neurodiversity, and to be more accepting of myself.

    ReplyDelete
  17. Love, Valuation, and acceptance versus demeaning or belittling different people.

    Rational Science versus profiteers, charlatanism, unproven therapies and Woo.

    Working through problems instead of just crying out Pity ME as some groups do.

    Freedom of expression versus squelching opposing viewpoints. (Though yes I beleive the rash and harsh or obscene should be 'moderated' off the logs.)

    Probably a few more things too, but I think you've got the basis of my drift.

    ReplyDelete
  18. I'm new to this site ... new to all these FANTASTIC ND-friendly blogs. So. "How did neurodiversity win me over?"

    I was born to it. My big brother is autistic, undiagnosed until adulthood. As far back as I can remember, all I wanted to tell the other kids, the teachers, even our parents was, "He is who he is. And he's funny and smart, too! [to the teachers] It's not that he's 'obviously smart but just not applying himself,' heck, he's 'applying himself' more than this whole student body put together! You're supposed to be older and smarter than me ... you're all saying you can't see that?? [to the kids] He would never intentionally harm you. It would not occur to him. WHY do you purposefully harm him? STOP it! [to our parents] It's enough that he has to just make it through the school day. Please stop making him revisit it by asking him every dang day 'and how did you fit in today?' At least when he's home, just let him relax and be himself." I wished there was a name for what he was, figuring that would maybe let me be able to say, "My brother is X. That's why he is the way he is. Will you leave him alone now?" But then again, I thought it was just as well that there wasn't a name for it, because I figured if people had a name to call it, it would sound like a disease, and people would feel sorry for him, and I didn't want people to pity him, I wanted them to LIKE him. He was different, yes, but very likeable! Plus he never EVER got lost, so he was a good person to go on long bide rides with. And he always knew what time it was, even without a watch.

    So OK, now we know, he's high-functioning autistic ... neuro-atypical.

    I think I was born to love neurodiversity, and I am so glad to have found these amazing blogs. Very sad that Kev's blog is gone now, and I'd only just found it.

    And so ... the rest of the story. My beautiful funny loving amazing son has Asperger's syndrome. I spent some months a while ago infatuated with enzymes and stuff (though I never really did buy the vaccine story), read more, read even more, allowed some doubts, read even more ... allowed the rational brain to take back over, remembered all those things I'd wished (some decades ago) that I could have told my parents back then (let him be himself, just love him, he's a really great kid, I'm tellin' ya, I should know, I'm his sister ... and if he needs some pointers on the playground or some clear direction to remember something, then for heaven's sake, offer it, you bet, help him when he needs it ... but please also just let him be him), and came back to my senses.

    So. How did neurodiversity win me over? First I was born to it. Then I reasoned and remembered my way back into it.

    Thank you.

    Marie S.

    ReplyDelete
  19. I was born this way. ND is a label others give me, not one I use myself.

    ReplyDelete
  20. Meeting, reading, listening to, and communicating with autistic people.

    Along with establishing a reliable, trusted, and respected means of communication for one's autistic child, I think that meeting, reading, listening to, and communicating with autistic people is one of the most important things for parents and families new to an autism diagnosis to set about doing.

    ReplyDelete
  21. Wow, great open question there. I think it started even before my boy was diagnosed. When we learned that he was "developmentally delayed" but didn't have the proper dx because every doc's waiting list to see new kids was so bloody long... we read a lot. Mostly things found on the internet and I found one common theme, there was a LOT of conflicting information online, outdated research, and parents with opinions. All sorts of BAD information, basically. On thing I did find that moved me considerably was Jim Sinclair's essay, "Don't Mourn For Us", that I stumbled across perhaps a week before my boy got his official dx.

    Shortly after his dx, however, I received a book (one of those "one mother's struggle to save her son" sort of books) that supported biomed, linked vaccinations, talked about "leaky-gut", yeast overrun, poisoned bodies, yada yada yada. I'll admit that I was moved enough by her story that we tried GF/CF. With absolutely zero results, we gave up on it, then my mother-in-law found some doctor in her state that recommended B-12 injections, which we did (at the in-laws expense) for just over a year, with zero result. I mean, over a year, we saw changes in him, but it seemed to me that they might have occurred with or without the shots, and that we had no way of knowing that; that nothing happened if we missed an injection. The world did not stop spinning, and I was highly suspicious of some of the lines being fed to me by the biomed crowd. Example: Have them tested for mercury and food allergies, but don't let negative tests throw you, sometimes mercury IS the problem, regardless of what the test says. Oh really? Why have them tested at all if that's how it works? Same thing with the B-12 doc. His web site said to do the injections for six weeks, and if you haven't noticed dramatic improvements in that time, keep doing it for another year, and chances are you will see improvement. And I thought, "well, Duh. children learn and gain skills over time. Developmentally delayed or not, they do acquire new skills over time." And at that point, the whole thing seemed such a sham, just a way of making money off of desperate people.

    But we were desperate to have our boy communicate with us, so we enrolled him in a wonderful ABA program that really helped him a lot. In fact, I was initially put off of the ND community because of some of the things I had read about their opinions of ABA. I was also a little put off by it because many of the bloggers seemed so angry, and I seemed to be the target of much of that anger, or parents just like me just trying our best to give our kids the best chances in this world.

    I don't recall the exact blog or comment or even the blogger that made me realize that ND was the way to go. In fact, I don't necessarily agree with all of the ND philosophies, but I agree with the important ones. I'm not completely convinced that this is natural variation, or if environmental factors played a part. I just don't know. But either way, I absolutely adore my exactly the way he is. Of course I want him to learn to communicate with us, so that he may be less dependent on others when I am no longer around, but I plan on being around as long as he needs me, and will never ever EVER send him away to be cared for by others, no mater how much poo I need to wipe off my walls.

    I think I like ND because it accepts that disagreements are just part of the natural order of things, and the people in this community seem similar to myself in their conviction that debating respectfully and intelligently is the best way to solve disagreements. It just generally feels like a smart and well-rounded group of people, and I like that I feel at home in a crowd like this one.

    ReplyDelete