Monday, October 15, 2007

ND and Me

Joel of "NTs are Weird" just wrote a good post on the nature of the neurodiversity movement: it's not limited to vaccines or even autism.

I consider myself more of a dabbler or contemplater than part of the movement. I don't really feel that I'm even qualified to be part of the movement, in part because I'm neither a parent nor an autistic, just a friend/girlfriend of a gentleman who grew up with Aspie traits and is now probably subclinical as an adult (given that the one time he sought an official diagnosis by an MD, he was diagnosed with depression instead of Asperger's or PDD/NOS). So depending on who you ask, he may not be autistic now and may have never even been autistic. But he is neurologically quirky. As are we all, to some degree. Heck, I was a quirky kid myself, even though they couldn't do better than the ubiquitous "AD/HD" diagnosis-wise. The other reason I don't feel qualified is because, well, all I'm doing is blogging. I'm not out campaigning to local groups or governments to end institutionalization or anything grand and admirable like that.

I do also have an Internet friend on the spectrum, but she lives far away and I've only met her in person twice. Long before either of them, I had a real life friend with nonverbal learning disabilities, which has some social skills issues similar to those of an indivdual on the spectrum. She was the person who got me interested in psychology and neuropsychological conditions in the first place, and the reason I'd heard about adult and non-classical autism before I'd even met my boyfriend. I didn't keep in touch with her after leaving college, though...I've never been good about that kind of thing.

I came into the ND blogosphere with the idea of providing a positive perspective on relationships between people on and off the autistic spectrum, given that I was frustrated with the excessive emphasis on what I call "angry wives' clubs" in the world of adult autism and relationships. I had been turned down from a support group for adults in relationship with autism-spectrum individuals because of my youth and relational inexperience not matching the majority of the group, but I still wanted to share my unique perspective to offset the pessimism set forth by certain books and forums about autism and romance. So my interest naturally lies in the realm of the need for better awareness and accommodation for issues related to neurodiverse adults. Autistic-spectrum conditions and other conditions traditionally diagnosed in childhood are largely ignored in adults - little in the way of information, awareness, and service seems to be out there, and well-adjusted adults like my boyfriend constantly run into the "you seem normal to me, so just stop whining and get with the program" problem.

As I got into blogging, though, I diverged from my original idea into writing almost anything remotely related to society and its expectations regarding conformity and disability issues, and I think it's been a while since I've actually written something related to the issue of adults on the spectrum and relationships.

When I started lurking regularly on the Autism Hub, I noticed two things: (1) even the Hub is heavy on parents debating how to treat children, although the next highest component is the writings of autistic adults themselves, which were what really piqued my interest; and (2) they have no category for "friends of autisitc people." Lately there's also a third thing: the administrator is stepping down due to the petty fighting among parents having gotten too serious and dangerous for him and his family, and so the Hub's future is uncertain. (Aspergian Pride's Cure for Ignorance campaign, whose linkroll I've kept on my sidebar ever since I discovered I'd been added to it, could also be a decent place to look for adult autism blogs, and it has some that aren't even on the Hub...but it's kind of harder to navigate. I noticed another form of the listing on their website, though, where they have the blog links available by category.) And on autism forums open to friends, peers, and the general public but centered on the autistic individuals themselves, which my boyfriend introduced me to long before I knew of the Hub, you're going to need a good self-deprecatory sense of humor (which I thankfully have) to deal with all the joking and non-joking anti-neurotypical sentiment there. So it seems like there's a lot of room for improvement with regard to resources for adults and peers. I found a couple of really good forums on Delphi with the help of my boyfriend doing searches, but alas, their best stuff is private, so there's still not a lot that's both out there and easy to find.

I'm still working on forming my beliefs, positions, and causes. Hell, I hope I always will be, because if I stop refining my beliefs I will be closed minded. But here's my list of things that I would at least nominally support at this point: greater awareness of autism, learning disabilities, and the like in adults; destigmatization of neuropsychological conditions; debunking of the myths of what the autistic mind is like, e.g. lack of empathy and seeing people only as objects (autistic adult blogs are great for this); reasonable accommodations without fanfare (I really liked ABFH's "left handed scissors" post on the issue); and more positive perspectives and resources out there for the friends and partners of people with neuropsychological quirks (so we don't have to live in ignorance and wonder why our peers can't just act as normal as they seem, or else to feel like we're not officially qualified to care about or take interest in the well-being of our friends and people like them). In fact...not only are friends and nonmarried partners likely to feel unqualified to speak out about autism and neurodiversity issues, parents and autistics will sometimes even fight with each other, each saying that the other's category either doesn't belong in the advocacy movement or belongs on the sidelines! That is just pure suckage. Infighting is unlikely to help people get what's best for themselves, their friends, and their loved ones.


Chuck said...

That is a poor psychological answer.

These is what is best for you, and there is what you believe is best for you. As long as there is difference between these two, there is conflict. It works on the individual, political, or ideological levels.

reform_normal said...

Sure...but does the conflict have to get as ugly and bitter as it does?

Debate is necessary. People do need to discuss and explore the issue and get each other to think in order to figure out how to help people with neuropsychological disabilities and quirks. I have doubts, however, that slander is necessary, or that mistrust based on one's relationship to autism (self, relative, or friend) rather than one's position on autism is necessary. These are the things I consider "infighting." Debate about the role each person should play given his/her unique relationship to autism is fine and even necessary, but does it have to get to the point of "you have no right to speak because as a person claiming X relationship to autism you have no idea what the real issues are?" If you don't think someone knows what the real issues are, or what the real issues are for you given your relationship to autism, why not try to inform them rather than blaming it on their relationship to autism and not wanting to hear from their whole relationship category? I like to think there are more tolerant ways of handling these issues.

Maybe the nastiness is necessary, though, because there are certain aspects of human nature and nurture that are hard to change.

Chuck said...

Hey, go back in time and get rid of the Cain and maybe we will be more Able (I know, very old bad pun)

abfh said...

I don't believe that it is possible to make totally objective and accurate determinations of "what is best for you." Human life is just too complicated for that. Every potential action has a tremendous number of pros and cons, most of which we don't even notice. A particular choice may be "best" in one way, but not as good in another. What are the most important factors in determining the best choices? When we make that value judgment, we're unavoidably in the realm of belief.