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.

We are great! We're like this famous person and smarter than everyone else!

Who cares if Einstein was autistic, Edison was AD/HD, or a gazillion great writers were bipolar? If you're autistic, AD/HD, or bipolar, you probably don't have whatever made them famous (including any sheer luck factors not related to their neurology).

Ronald Reagan had Alzheimer's, probably even during his presidency from what I heard. Does that mean that anyone's senile grandma could run a country, due to the Alzheimer's gift of being able to conveniently forget recent self-incriminating information? Hell no.

This isn't to say that all neurological differences are diseases. I just used that example to point out the absurdity of the notion that sharing a vague category of brain functioning, which will play out completely differently for every individual brain affected, made you any closer to the famous people. I have the same neurotype as Paris Hilton (assuming my AD/HD dx was in error). Same gender too. Does that make me like Paris Hilton? God I hope not!

The identification of celebrities of different neurotypes, disabilities, or other groups, I suppose, does help to disprove notions that people of these groups are useless to society.

But...damn. Haven't celebrities gotten enough attention already? Why bask in the reflected glory of famous people instead of enjoy your own life and self as they manifest? Why do you have to achieve something "great" or become famous for your life to have meaning? Nobody wants to be a regular person anymore, except maybe those who are told that they are lesser beings than regular people and believe it. But most of us are and always will be regular people. And I don't want to accept the idea that it's a dire fate, nor do I want to lie to myself and associate with some arbitrary category I can put myself in (personality type being one example of such a category I've used) and its supposed "rarity" or "gifts."

I also don't want to hound myself anymore for not being special enough, and envy people in arbitrary "rare" groups for being special. And I don't wish that fate on anyone else. It's turning the notion that a regular person is a bad thing to be into a self-fulfilling prophesy, precipitating an episode of Closedmindedness.

Regular people can have unique and beautiful experiences, all to themselves: sipping a cup of tea, pursuing a passionate interest, advancing a passionate romance, looking at the rich colors of flowers and leaves. They can have a perspective on life that nobody else has, or will ever have (even if they're afraid to share it for conformity's sake).

Treatment vs. Cure

Just read this while perusing AFF:

http://autismrealitynb.wordpress.com/?s=aspies

From what I've read of neurodiversity, they aren't against treating autism. They're all in favor of services, educations (that don't just force the kid to perform NT-ish tricks, but rather to do something meaningful), and tools to help autistics do better in the world.

What they're against is trying to eliminate all autistic traits in people altogether, especially using therapies that are not proven to be able to do so, and not even giving autistic people a chance in life.

Consider the case of treating blindness or deafness, both of which are essentially incurable. They are given educations in alternative communication methods like Braille, sign language, or lipreading; and they are given tools such as canes, service dogs, specialized computers, and text phones to help them get around the missing sense in daily life. Yes, there are hearing aids for deaf people, but they don't work perfectly.

You don't see throngs of parents trying to cure their children's blindness or deafness with a special diet (although some people do benefit from special diets) or with antidotes to poisons for which there's no proof that these poisons are the cause of blindness or deafness. You don't hear of blind children being taught in behaviorism classes to not close their eyes or move their eyes around when talking to another person, lest the other person think the blind person is being evasive. You do sometimes hear of deaf children being taught to always wear their hearing aids, lipread, and speak as best they can to mask their deafness...but a deaf person I know who was raised that way thinks it was a totally dumb idea (no pun intended). Blindness, especially, is hard to mask, and people who have it are allowed - even encouraged - to be open about it, sporting those red-and-white canes and service dogs and dark sunglasses, so that people can accommodate their disabilities.

Why not do the same with autism? Why not just let them show their disabilities and accommodate them with the proper tools? Why try to train them like dogs to make eye contact like a normal person? Why lob onto the most ridiculous theories for why they ended up autistic, and use the most ridiculous quack cures to try to undo their autism?

Perhaps because of the cognitive difficulties of autism, and how they're hyped up by the media. A blind or deaf person is presumed to be able to think and feel like the rest of us. They can generally also take care of themselves physically, missing senses aside - go to the bathroom and so on. But an autistic, especially a low-functioning autistic with many disabilities and sensory processing issues, is presumed oftentimes to not be a sentient being. And even high-functioning autistics can be labeled monsters.

I hope the neurodiversity movement will eventually become believable and visible enough that the general public will start to see and treat autistics as human beings, much as is done with blind people.

Paranoia and Bias

When venturing into new corners of the Web, or posting certain things, I sometimes experience a bit of anxiety and regret. It happened when I started this blog, too.

What's to be so scared about?

Well...I worried that I would be flamed off the neurodiversity blogosphere because I'm neither an autistic nor the parent of an autistic, and therefore don't belong here. I make my neurological status, connection to autism, and lack of traditional authority clear up front on the home page of this blog, so as to avoid any confusion and alleviate any concerns about me taking anyone's voice away or deluding anyone.

Why was I scared? Largely because I read this.

It's understandable why some people would be paranoid about NTs taking the voice away from autistics. A couple posts on NTs Are Weird talk about how when two people with differences or disabilities go out, the more "normal" looking one is assumed to be the more competent one to handle the money. If people tend to assume that the more "normal" people are more competent in general, then they might flock to the NTs in the movement, especially parents, teachers, doctors, and therapists (i.e., authority figures), or give their voices more weight than is due to them.

However, I get the sense that many people venture into the neurodiversity world primarily to hear the perspectives of the neurodiverse themselves - a perspective neglected or minimized in other spheres of discourse about neurological and psychological issues. That's what originally attracted me to it: to learn about autism from people who have lived the experience.

But even if people concentrate mainly on the perspectives of the neurodiverse thesmelves, that doesn't mean that some voices will not get undue or undeserved weight. When people seek out information and opinions - and I'm no exception to this rule, by any means - they tend to gravitate toward those who already think along the same lines they do. Furthermore, people also have a tendency to misinterpret or edit out or leave out information that does not agree with their preconceived notions. Add the media, influenced by the preconceived notions of society at large, and it gets worse. A lot can still be left unheard as a result, even if people only talk to the neurodiverse.

There's no magical formula to prevent bias and the failure of important information to be properly heard.

And I doubt that an NT talking about autism on the web, who is neither a desperate parent trying every bit of quackery to turn their kid "normal" nor an angry affection-starved wife who doesn't think autistics are capable of loving people, is any serious danger to the neurodiversity cause. No wonder some people in the neurodiversity movement advocate separatism. The most visible non-autistics with opinions on autism are unrelentingly hostile toward autism and autistics, and/or perpetuate dehumanizing views of them. I'd like to see that change. That's why I started this blog.

Popular Conceptions of "Mental Disorder" Impair NT Development

It isn't just the "neurodiverse" who are being held back by the view that they all have "diseases" that must be "cured" in order for them to live fulfilling lives.

The shrinking of the category of "normal" to an increasingly unattainable ideal is bad for the development of the full strengths of neurotypicals, too.

Compared to autistics, neurotypicals are supposed to be good at seeing "big pictures," changing their routines and habits, and imagining and working with the minds of other people. And although I don't believe autistics are necessarily as weak in these areas as they're made out to be, and especially not for the reasons they're made out to be ("they're just born that way" rather than "they just see the world differently and nobody realizes what to do about it"), I think that NT cognitive styles really do have potential for a certain flexibility that can be put to many great uses. The adaptability of modern humans to ever-changing environmental conditions and social situations is thought to have been essential to their evolutionary success, and the majority of modern humans, pretty much by definition (though given the way definitons are going, this might change), are neurotypical. Oftentimes if something in nature ends up common, it's because it "works."

But current concepts of "mental disorder" shrink down "normalcy" to a pinpoint and lead to the expectation that someone or another will "treat" or "cure" everyone who isn't "normal." This encourages us normal people to be lazy, thinking, "Oh, we don't need to change, THEY do. THEY have the problem." As a result, we don't change, and our cognitive flexibility that we could be using to work on reaching a mutual understanding with the neurodiverse people next door goes unused. We are not encouraged to stretch our imaginations to peer into very different minds, because those minds don't need to be so different.

And so we become just as inflexible and unempathetic as we claim autsitics are.

And it's not because we're just wired to be that way. Yes, part of our nature does include the capacity to dim or shut off empathy if fierce competition with another human or group of humans becomes necessary or exceptionally advantageous for survival. But another part of our nature, probably just as powerful, allows for the overriding of the nasty side when there is much more of an advantage to cooperation.

A lot of talent, spirit, and even life can be lost if that overriding capacity is underdeveloped. Do we really need all those wars, and all that schoolyard bullying? Would relationships be as strained and short-lived if people were encouraged to try to understand people who think radically differently from themselves?

We NTs don't even all think the same way as one another. We miscommunicate all the time. We fail to see the other's perspective. And that's supposed to be our strength. Focusing on the weaknesses of those who think differently from us, labeling them as disordered and inherently at fault for all their problems and expecting them to be cured, plays against that strength, and instead fortifies costly ego defenses that amplify our weakness of tending to pay too little attention to the hard and relevant facts of reality. How can we see the gorilla in the basketball court when we're too busy trying actively NOT to see things that threaten our ever-so-fragile egos? It's a lose-lose situation. The strengths of all are underdeveloped, and the weaknesses of all are amplified.