I'm not here to complain about it.
It's also true, though, that there is a rift between the people who are attempting to increase access needs and to work on civil rights and a group of people who want to focus *exclusively* on identity. The latter group tends to be privileged in some way, either due to a combination of race and socioeconomic status or because they received attention and guidance that allowed them to assimilate into the larger culture. They often feel lost and alone, not understanding why most of the people they surround themselves fail to identify with them. They need community.
I'm not here to complain about that, either. Those of us that are diagnosed as adults often have long histories of isolation and depression that we have not shared with others. Even when our surface scripts have allowed us to attain a degree of professional success, we often find ourselves sacrificing family or personal relationships to do it. When we are finally diagnosed, late in life, we drink in the community that we find deeply and we seek nourishment in it. This is natural; this is fine.
Unfortunately, though, there is a tendency to divide "us" from "them" in our community. Many parents view "Aspies" as something apart from their children, not something that their children could one day grow into. They assume, because we are articulate and we have learned the rules, that we have "overcome" challenges. This is a ridiculous and dangerous assumption. No doubt there are some members of the community whose personal challenges are greater than others. No doubt there are members of our community who do not fully grasp the extent of the challenges faced by others because they themselves have not faced them or known members of the community who face them.
This is to be expected, to some extent, but the solution is not to divide our community into two camps. Nor is it to dismiss "Aspies" as having some other identity. To do this is to further disenfranchise a group who has already faced social disenfranchisement for their entire lives (even if they have not faced political disenfranchisement). It creates a kind of disability ghetto where any remaining challenges to their success are the individual personal failing of the "Aspie", who is assumed to be assimilated into the allistic hegemony and therefore "successful." Such a division is neither helpful nor useful. It is a way of directing resources toward one demographic at the cost of another, and it falsely assumes that the current presentation and status of the "Aspie"s symptoms, traits, or whatever you want to call them--let's just settle for characteristics--it's the assumption that the presentation of those characteristics in the adult before you is static.
This is a dangerous and false assumption, too. One that does not take into account the complex and difficult journey that is life for all of us, autistic or allistic. It is an assumption that fails to acknowledge the basic fact that autism is a developmental disability--a difference in the rate and kind of growth a person experiences over their life. It's not a developmental halt.
It's dangerous because it denies adults access and it leads parents to deny that their children will one day be autonomous decision makers, guiding their adult lives with only the supports they choose and achieving goals that they set for themselves.
If you're reading this and you just said, "but my kid won't have those things, you just don't understand because you haven't seen him," then you're part of the problem. It is true that there are members of our community that will always need some form of assistance, that can not live alone. This does not mean that they can not live independently or that they will not be able to make their own choices.
I'm not saying that your child does not have challenges, though. And I'm also not saying that your child absolutely will achieve anything. Just that the assumption has to be there that, given the right supports and tools, it will be possible. It will definitely not be possible, though, if that child is immersed in an environment that assumes that successful autistics are not them. I'm saying that supporting autistic children requires showing them Autistic adults who are saying "We Are Like Your Child".
It requires more than that, though. It requires those of us that have achieved our goals to speak out about the challenges we have faced along the way, including those that we still face on a daily basis. It requires us to acknowledge the non-autism traumas we have experienced because of the differences in our emotional and cognitive developments, including the times we were excluded, abused, or marginalized by authority figures.
It also requires us to stop holding ourselves apart. Parents of children with extreme challenges and/or co-existing conditions are not the only ones creating this divide. The term "Aspie" has come to be a way for those of us who want to talk about our experiences to separate ourselves from "those" Autistics. It allows us an identity that has been sanitized for our allistic audience--a way of performing eccentricity instead of disability, of showing we are "like them" but "still employable".
This is disgusting.
I realize that not everyone who throws out the term "Aspie" means it in this supremacist way, and I realize that not everyone with an Asperger's diagnosis is comfortable with the Autistic identity. When I was first diagnosed, I had two opinions I was weighing--one that ignored my synesthesia as a "neurological quirk" and diagnosed me with Asperger's, and another that asserted that my synesthesia was an extreme sensory processing issue that "increased" my diagnosis. For some time, I looked at my ability to finish my schooling and my track record of providing my own basic means of survival and I said to myself that it would be appropriative or demeaning for me to seize upon "Autistic" for myself when so many other people had such greater challenges to face.
I was wrong. I was wrong then, and the well-meaning people who think the same way I did four or five years ago are wrong now. It is precisely because there are people who need supports that we must seize the Autistic identity. We can't stop there, though--if we did, we would only be a supremacist faction within the community. We have to accept that We are like your children. We have to come to terms with the things that we did to ourselves and the things that were done to us, and we have to put forward a collective effort to create a community where there is outreach, where we don't simply assert that children will be able to grow into autonomous decision makers, we show how it happens.
Each and every one of us should be proud to be Autistic, and we should be mentoring Autistic children ourselves. Not necessarily working with them professionally--not all of us have those talents--but at least finding the Autistics in our lives and our communities and connecting with them. We can be Big Brothers/Big Sisters, we can be involved in church programs (those of us who are religious), and we can simply connect to and share our stories with the people in our families who have Autistic children.
Leaving the Aspie label behind is not just a matter of altruism, either. "Aspie" is a diminutive form, and it diminishes us to accept it as an identifier. It reinforces, through its connotations, a sense that we are somehow naive about the world or that we lack something that we just won't ever develop. Even as it sanitizes us and presents us as "employable" or "no longer disabled", it provides an avenue for others to view us as highly specialized children with adult work efforts (at worst) or sexless workaholic nerds whose interior lives are dominated by narrowly tailored hobbies and not the business of adult life (at best). We should accept neither.
I want to close this essay by directly addressing a few objections that people who know me might raise. I am not writing this to blame parents, I am writing it to discuss ways in which all of us might improve. If you're currently part of the problem, I'm not mad at you, I just want you to change. Similarly, if you're doing a lot of things right, like protecting your child's privacy until he/she is able to write zir experiences for zirself, good. If you doubt that your child will ever be able to read at the level you're writing at but you stay your hand just in case, then I think that maybe you're a pessimist, but your behavior shows that you are on the side of the angels in this debate. If, however, you read this and went "You just don't know because..." or "I'm not like that, I just...", then I can only say this:
Don't you dare "Aspie" me. I know who I am and I know what I had to do to acquire the skills necessary to perform your "eccentric but functional" perception of me. It is a performance, though. All of this is (the blog, my books, personal appearances). It is held together with duct tape, anti-anxiety meds, and frequent trips to a dark and quiet room.
Don't presume to know my past or the range of my obstacles.