Neurodiversity

How I Feel About Those Who Want a Cure

Please be warned:  If you’re hoping for an anti-curebie tirade, you won’t find it in this post.  Likewise, if you’re hoping I’ll say that autism is a disease that must be eradicated, you also won’t find it in this post.  In other words, I feel pretty certain I’m going to disappoint anyone who wants me to pick a side and stay there, but the world is not a black-and-white place, and I’m not going to pretend it is—even if you think that being autistic means that I automatically see everything in black-and-white terms.  (And, by the way, if you carry that belief about autistic people, I suggest you take a look at your own black-and-white thinking.)

So, here’s the thing:  I’ve been reading fairly widely lately in the world of autistic people and their parents, and to put it mildly, my sensitive soul is in an uproar.  I’ve been reading posts by parents who compare autism to cancer. I’ve been reading posts by parents who think that vaccines cause autism.  I’ve been reading posts by parents who think that we’re in the midst of an “epidemic” of autism.  I’ve been reading posts by parents who want to find a “cure.”  As an autistic person, I recoil from these kinds of sentiments, and I feel to the core how damaging and how degrading they are.  For me, dealing with the psychological and emotional impact of them is far worse than any challenge that arises from being autistic, by several orders of magnitude.

But I can’t just dismiss these parents as narrow-minded people.  Even if some of them fit that description, I can’t dismiss them.  They are human beings, after all, and something is driving them—something more than the privilege of defining “normal” and a sense of entitlement to children who fit that definition.  As a parent, I think I understand it.  It’s fear—not fear of autism per se, but fear of what is going to happen to their children as they grow into adulthood and one day lose their parents.  Any parent of a typically abled child knows what I’m talking about:  the way you worry, from day one, about how other people will treat your child, about whether the child will be hurt by words or deeds, about what will happen when you watch your child go around the corner alone for the first time, or cross the street alone, or ride a bicycle to the corner store, or go on a date.  My daughter is getting ready to leave home and spread her wings, and the only thing that keeps me from going into a raw panic about watching my only child move into a world of unscrupulous, nasty, violent people is that I can say to myself, “I stumbled into life with far less support and far less savvy than she has, and I survived.”

For a parent of a disabled child, the fear of what will happen to the child in adulthood must be immense.  Who will be there to help your son or daughter when you are gone?  Who will assist with daily living tasks?  Who will listen?  Who will be kind?  Who will be welcoming?  Who will love your son or daughter as you do?  I am a disabled grownup with the sheer good luck of being financially secure, and still, it’s no picnic out here.  It’s damned lonely.  It’s damned difficult.  It’s a very vulnerable existence to live in a world that doesn’t understand me and that, with some very notable exceptions, doesn’t care to.

Personally, my solution to this unhappy situation is to advocate, advocate, advocate:  for services, for accessibility, for accommodations, for respect, for open-mindedness, and for an inclusive society for everyone. My solution is not to find a “cure” that will make all of us alike.  The solution to anti-Semitism isn’t to do away with Judaism, the solution to homophobia isn’t to do away with homosexuality, and the solution to a world that not-so-secretly hates autistic people is not to do away with our neurotype.  The solution to cruelty based on difference is not to erase difference.  It’s to build a just and loving world that treasures difference and treats people with dignity.

But look at the world.  Does it look like it’s going to become a just and loving place any time soon?  Here in the US, we’ve got an economy that’s a wreck.  We’ve got towns that are cutting basic services, like having police officers and firefighters on duty.  We’ve got people who have to go to court to get legally mandated services for their disabled kids, bankrupting themselves in the process.  We’ve got a society that treats most people badly—a society where you’d better hope like hell you don’t get sick, because if you do, either you won’t have health insurance, or you will be struggling with your insurance company for payment while you’re throwing up from chemotherapy.  And amidst all this, you’ve got people living with the panic, every day, of sending their autistic children into this kind of world.  I can understand the panic and the vulnerability.  I can understand that, when faced with the idea of changing the world versus finding a “cure,” some people believe that finding a “cure” seems the more hopeful option—especially if the “cure” is to get people simply to stop vaccinating their kids.  People are more hopeful about the miracles of modern science than they are about the capacity of human beings to treat each other with a shred of dignity.

So, yes, I have empathy for where these parents are coming from.  I just wish that these same parents had anything approaching the same level of empathy for me.  Instead, when I try to discuss anything, one of two (logically contradictory) things happens:

1.  I am ignored because I am not autistic enough.  The very fact that I can write, express empathy, give birth, and have a good marriage means that I just don’t know what I’m talking about when it comes to autism—that I’m not like their children, that I have no right to speak about their children’s rights, and that I’m too “high functioning” to get it.  These people didn’t see me growing up.  They didn’t feel what it felt like.  They didn’t see me stumbling from one failed friendship to another.  They didn’t see me getting bullied and victimized.  They didn’t see all the tears, all the pain, all the hard work, all the loneliness.  Of course, if I’d remained a victim, I’d probably get more credibility.  Somehow, the fact that I’ve managed to find happiness actually works against me.  I’ve made a life for myself without IEPs, without early intervention, without occupational therapy, without social skills classes, and somehow, that means that I’m not really autistic. Instead of having empathy for how hard all that was to do on my own, without any support, people take it as proof that I’m not like their children after all.  It’s as though autistic people got created by the DSM and early intervention programs, as though we haven’t been here all along, for generations, for centuries, struggling like crazy to stay safe in a world we don’t really understand and that doesn’t really understand us.

2.  I am ignored because I am autistic.  I find this dynamic happening on some of the “mom blogs” written by neurotypical mothers of autistic children.  It’s just like real life.  I show up as a mother, and for a little while, it works.  I show up as an autistic, and it’s like I’m not even there.  I’ve had it happen over and over:  I’ll make a comment on a post, and the blogger will respond to every other comment but mine, no matter how short and sweet and lacking in substance the other comments are.  And no, it’s not just a coincidence, and no, I’m not just taking it personally.  To quote Laura, my fellow autistic blogger, “I’m an Aspie, not a dumbass.” Interestingly enough, I do not find this dynamic on the “dad blogs” written by neurotypical fathers of autistic kids.  In fact, they seem very much to want to hear my point of view, because it gives them insight into their own children.

Now, I know that there are neurotypical moms out there who read my blog for these same insights, and I am not talking about you.  I am talking about the women bloggers who exclude me the way that other women have always excluded me:  because I’m different, because I don’t engage in small talk, because…who knows why?  Why do people exclude autistic adults?  Is it too scary to think about the fact that their autistic children will one day be us?  If I succeed at anything, it seems, I’m not autistic enough; but if I can’t attain that elusive and illusory goal of becoming indistinguishable from the neurotypical majority, especially as a woman, then I’m instantly devalued for being autistic.  My autistic brain will never understand how people paint themselves (and us) into a corner like this, and to tell you the truth, I think that speaks very well of my autistic brain.

So, to all the people looking for a cure in order to render us “normal,” please consider what “normal” means in conversations about autism:

• It’s “normal” to be told that I’m both not autistic enough and not welcome because I’m autistic.

• It’s “normal” to exclude me because I don’t think like you and talk like you.

• It’s “normal” to tell me that I can’t speak on behalf of other autistic people, because I’m not like them, but that neurotypical people can speak on behalf of autistic people, because they know better.

• It’s “normal” to tell us that if we can speak for ourselves, we can’t be autistic, and that if we can’t speak for ourselves, we must be autistic, and therefore, other people can speak for us.

• It’s “normal” to forget that autistic people have always been here.

• It’s “normal” to want to make everyone just like you, without reflecting upon why you want to do that and whether your version of “normal” is something that everyone should aspire to.

• It’s “normal” to say that your autistic child is the product of defective genes, toxic chemicals, or evil vaccines.

• It’s “normal” to talk about us as if we’re diseased.

• It’s “normal” to think that this kind of talk is going to do anything to create a world that is safe for your child.

If you describe your child’s way of being as the result of some sort of defect or toxin, you are not setting up your child to have any dignity or respect.  At best, you’re setting up your child to be pitied, and being the object of pity is no defense against bullying, against discrimination, against becoming devalued by people who can’t think outside the “normal” box.

Someday, there will be a “cure” for autism.  It will be called “pre-natal screening.”  For those who can afford the test and who are willing to abort a child, autism will be a memory.  But you will not get rid of us.  There are many more people for whom such a test will not be available, and for whom abortion is not an option. Meanwhile, there are (and always will be) living, breathing autistic people whose lives, whose thoughts, and whose experiences are being devalued as some sort of environmental or genetic mistake.

One of those living, breathing autistic people is me.  So you’ll excuse me if I’m not in a hurry to emulate your example of “normal,” but it really doesn’t seem that you have my best interests at heart.

© 2010 by Rachel Cohen-Rottenberg

Rachel Cohen-Rottenberg blogs at Journeys with Autism. How I Feel About Those Who Want a Cure appears here under the terms of this Creative Commons License.

Rachel Cohen-Rottenberg’s recently published memoir is The Uncharted Path: My Journey with Late-Diagnosed Autism.

[image: Rachel Cohen-Rottenberg, Sojourning in the Visual World]

Rachel Cohen-Rottenberg on 10/5/10 in featured, Politics | 2 Comments | Read More