Why Is A Cure For Autism So Horrible And What’s Wrong With a Balanced Approach?
on August 7, 2012 at 1:57 pmThere’s a scene in X-Men Last Stand where one of the “evil” mutants is about to kill one of the scientists that developed a “cure” for mutants. Terrified, the scientist says, “We were just trying to help you!” to which the mutant replies “Do I look like I need help?” and then he kills her.
That two sentence exchange pissed me off to no end. I’ve been reading comics pretty much my entire life and I understand that the whole “mutants are discriminated against” thing is a metaphor for the bigotry that minorities suffer on a regular basis. The idea of “curing” someone of being, for instance, black or gay is offensive so the “evil” mutant has every right to be outraged. There’s a problem, though, with that premise, there is nothing intrinsically negative about being black or gay (or both) while there can be something intrinsically bad about being a mutant. What if your mutant power is to smell like a skunk? What if all you do is ooze radioactive slime? What if your “power” is something that makes life unbearable? The mutant that claimed he doesn’t need help looked perfectly normal and could easily pass as a regular human. How nice for him.
What does this have to do with autism? There is a group called “Autism Speaks” that is regularly lambasted for advocating for a cure to autism. They’re also targeted because of their fund-raising practices which is a legitimate conversation to have but I’m only interested in the push back they receive over their stance on curing autism. I have had readers complain that they don’t need to be cured and the very idea is offensive. Autism is a part of who they are, dammit! The other night, I watched two men with autism on The Big Picture make the same claim but one of them went even further; he described a musical genius that couldn’t control his bowels as an adult and that he, himself, had a photographic memory. Why in the world would they want to be cured?
Well how fucking nice for them.
I was so angry I actually started to curse at the TV, something I rarely do. Why would they want a cure? OK, how about this? Let’s take away the musical genius’ musical talent? Now you just have an adult that can’t control his bowels. Still want that autism? Let’s take away that photographic memory and the ability to interact well enough to tape an interview? Still sound like a good deal, buddy? Let’s throw in lifelong incontinence and violent outbursts, too. Still feel so outraged about someone looking for that cure?
Contrary to popular belief, savant abilities manifest in a very small number of people with autism. To use that as a reason to defend autism as a good thing is, frankly, disgusting. I take my son to speech therapy and while I’m there, I see kids much worse off than my own. I see one child, 11 years old, that has never made eye contact once in the year I’ve known him. He hardly speaks and his mother tells me he just reached a first grade reading level. It seems unlikely he will ever progress to the point where he can take care of himself. Another kid, about 13 or so, can speak but he can only parrot what others say over and over. He gets angry and can’t calm down. He has a strange rash on one arm that I couldn’t figure out until yesterday. I found out that he bites himself. Hard. Hard enough to leave a scar. Neither of them have displayed a savant ability.
But why in the world would they want to be cured?
There most likely will never be a cure for an autistic adult and perhaps not even for autistic children but to identify and correct autism prenatally? How is that not something we should strive for? Will we lose savants? Yes. Is that enough of a reason to condemn others to a lifetime of unnecessary hardship? Never. If the gentleman with the photographic memory still thinks so, I invite him to tell a few of the women I know that the stress they have to live through daily for their entire lives is totally worth it because he got a gift with his mild autism. I’m sure he’ll remember the ass-kicking he’ll receive with perfect clarity.
And then there are the parents of autistic children. My son has very mild autism. It’s possible he will develop complications later like bi-polar, anxiety and other personality disorders, but for now, we have it easy relative to most of the parents my wife and I know. In one group we belong to, we see parents with multiple children that have for more severe symptoms and have been dealing with it for far more years than we have. Do you know what they never, EVER, say? “Thank God my child has autism! What a blessing!” They say “I love my child with autism!” and usually follow it with “Fuck autism and fuck everything about it!” I don’t think there is a one of them that, if offered a pill that would make their child neurotypical, wouldn’t snatch it like a glass of water in a desert.
But why in the world would they want their children to be cured?
Let’s be clear, I am not suggesting we should divert all our meager resources (autism research is still criminally underfunded) to finding a cure. I’m told that this a problem that has afflicted the autism community for decades. One side refuses to countenance a cure and the other thinks only about it. There is far too much that can be done in the meantime to help alleviate some of the worst symptoms to ignore those avenues. From therapies to special diets to drug regimes to a combination of all or none, every autistic person is different and will respond differently, there is no magic bullet. Even if a prenatal cure was invented tomorrow, that does nothing for the tens of millions of autistic children and adults currently living their lives with varying degrees of difficulty. They need those intermediate treatments and we need to continue to refine and improve them. Striving for a cure is a laudable goal but not at the expense of everything else. That would be just as cruel as denouncing a possible cure for the benefit of those fortunate few that receive the blessing of a savant ability along with the drawbacks of autism.
thank you so very very much for your brave and accurate post. My autistic husband would give nearly anything not to be autistic, and he is very mild, barely on the spectrum.
As an very high functioning Aspie here. I would say I speak for much of the Autism community in saying do not want to be cured. We like who we are. Now to say we would like help with some aspects of life we find difficult is correct. Personally I like the idea of using technology to help us overcome some of our difficulties. technology such as:
http://www.engadget.com/2011/07/12/social-x-ray-glasses-can-decode-emotions-make-your-blind-dates/
I have looked at things like TMS (Transcranial Magnetic Stimulation) in which I have read about people who have Aspergers go through the treatment such as John Elder Robison.
More about TMS: http://video.pbs.org/video/1757258624
We don’t want to be normal, but we want help in ways that struggle with as with any human with a disability.
And if you were a low functioning Aspie that regularly shat yourself? Doesn’t sound particularly enviable to me. How about you?
Justin Rosario obviously you don’t understand the autism spectrum in the first place. That and your being nothing more then a troll on this. There are many levels in the spectrum with Aspergers being on the high end and Rett’s syndrome being on the low end. I have been friends with many lower end Autistic (which is about middle in the spectrum). And they are perfectly content with how their life’s are.
I doubt you know any lower functioning people on the spectrum with the way you speak of this.
the problem with autism speaks is that it’s a group for the parents that talks about how horrible their kid is and how hard it is and how it’s like there’s a real person inside if only they weren’t defective. Searching for a cure is diverting funds away from trying to provide assistance for the social and behavioral difficulties that the autistic person as. As someone who is going to be married to an autistic person and has several autistic friends, I can tell you that their autism is intrinsic to who they are and that “curing” their mental differences would basically be erasing them. As you’re not one of those who can’t write or spell justin, have you been told by one who can’t that they’re upset by their existence? the autism speaks group is all about making parents feel better, often at the expense of their children.
Not to mention that neurodiversity is a GOOD thing, and we don’t all need to fit in a perfect cookie cutter mold. it takes all different kinds of people to make the world go around, and autistic people tend to see things through a different and equally important lens if we’d just let them share it and stop telling them that they have a problem.
http://www.youtube.com/watch?v=4iVektXsNRI let them speak for themselves, even if they can’t do it verbally. They know better than you.
I am autistic. It is part of who I am. I do NOT need to be cured. There is NOTHING balanced about the fearmongering Autism Speaks does.
Yes, you may not need to be cured. I notice that you can write and spell. Would you be so accepting of autism if you were one those who can’t speak or read or even put on your own clothes?
I think Justin’s main point could be summed up as “It’s not just about you, or 10, or 100. It’s about everyone.”
No one is advocating putting everyone into a magic box that suddenly makes everyone normal, even if such a box existed.
Looking for ways to improve the lives of others is what science should be about. Disallowing science to progress because it would not do exactly what you want is neither practical or possible.
We can agree to take into consideration the feelings of people who like where they are, while still improving the lives of others.
I find both sides of this argument to be at fault. Yes, some people have learned to cope and get along in this world. Some people never will. I am a widow with an autistic son and I just finished getting my son declared officially disabled. I doubt he will ever be self-sufficient even though he is a straight-A high school student (at a special-ed high school.) Autism Speaks is solely focused on a cure and that’s also wrong. Both sides need to find some middle ground to help the people who are already here and cannot help themselves. Parents don’t live forever and I fear for my son if and when I die.
I have a niece on the ASD and it’s very frustrating for her. She’s 8, has oodles of musical and artistic talent which she is given the opportunity to develop. However, she is severely anxious about life in general and has terrible separation anxiety, and finds it difficult to grasp emotional responses properly. She’s bright enough to realize she’s missing something, but can’t understand what. Which makes her anxious. In her case, she has a great deal of success with a casein-free diet, and it’s noticeable when she slips up. To see the frustration she deals with when she is trying so hard to “get” something that everyone else understands naturally is hard to watch. We are grateful that she’s only mildly afflicted, but if there were a cure, we would make sure she chose what was right for her.
Okay, so, reading the comments here, I get this out of the whole mess: “I don’t want a cure so you can’t have one either”
You know, good for those on the spectrum that are proud of themselves. Everyone needs a healthy dose of self-esteem. YOU do not get to make the decision for anyone else. YOU do not get to tell Justin’s kid that he isn’t ever allowed to be cured because YOU don’t think Autism is a big deal. YOU do not get to tell kids like the one Justin was talking about that he gets to spend the rest of his life chewing his arm off because you think your disease is awesome.
Neurodiversity IS good, but there is a reason it is called Autistic Spectrum DISORDERS. Do you know what an autistic brain looks like? I don’t mean structurally, I mean electrically. Have you ever seen what happens when someone high on the spectrum is faced with stimulation? The brain lights up like a freaking christmas tree. It is like a CPU overload. NOT a good thing, no matter how much you twist it around and tell yourselves you are lucky.
I’m lucky enough to not have Autism. I do have a brain injury. I love myself regardless of my multiple TBIs. I think it is funny when I forget simple things like putting my shoes on the right feet, or pouring milk into a glass and not the sink. My husband smiles and giggles when I stick dinner in the oven, set the timer and forget to turn it on. My daughter loves it when I forget to put a diaper on her butt.
I also cry when I show up at work, look around, and realize I have no idea where I am — this isn’t my workplace, this is some random other building. My husband worries when I can’t remember where we live. The neighbors worry about their kids — that strange woman down the street keeps trying to break in thinking she lives there. As much fun as we have joking about my TBI, as much as I have adopted it and made it a fun part of me, it is still horrible, and I would still jump at the chance for a cure.
If some other patient with TBI told me I was wrong for wanting a cure, I very well might punch them. You don’t get to make a decision for anyone other than you. Don’t want a cure? If they do ever come up with it, don’t get it. But don’t tell someone else what they can and can’t do with their body and mind.
I have a very mild form of autism. Most people do not know the hell that I have been through because of it. A huge chunk of that is only because of lack of education on the part of many of the people I encountered while growing up. I have found ways of coping though. Even if autism could not be cured, any research that could lessen the severity of it would be a godsend. Not because of me, but because I know that millions of children have it worse than me, and why would one person want another to suffer as much or worse than I did? This is a no brainer, you dont have to be a savant to see that.
I am an autistic person. I am also a mother to two autistic children, one of whom is nonverbal.
I am strongly opposed to an autism “cure,” and even more strongly opposed to autism “prevention” via prenatal testing/selective abortion. Yet, I am still a parent. I am far from the only parent of autistic children who accepts and does not wish to cure them. The pro-cure/prevention/abortion movement has tried very hard to claim to represent all parents of autistic children, but it does not. There are many parents who accept our children as they are, just as there are many autistic adults who accept ourselves as we are.
The notion that a cure, if developed, could be optional, and pro-acceptance autistic adults could simply opt out of it, is terribly naive. Autism is a structural difference of the brain. Medicine is nowhere close to developing the ability to “cure” that in our children’s lifetimes. The only possible autism “cure” that could be developed, and cost-effective, in our lifetimes is the same “cure” as Down Syndrome—prenatal testing and selective abortion.
Autistic people exist for a reason. We are fully actualized human beings with full human value. We have as much right to exist as anyone else. As we are around 1% of the population, there’s no risk of our taking over. We’re no threat to anyone. No non-autistic person’s life is worse off because autistic people exist. Even if, hypothetically, some non-autistic people’s lives were worse because of autistic people—for instance, if the claim that having an autistic child ruins parents’ lives had any truth to it—our right to exist would still outweigh others’ desire to avoid us.
To address one final point: people have used the term “suffers from autism.” This is a falsehood. Autistic people do not suffer from autism. Autistic people suffer from discrimination, from misunderstanding, from frustration, from pain, from abuse, from rejection, from oppression, from many other things, but not from autism. I’ve never suffered from autism, but I’ve suffered a great deal from how others feel entitled to treat me due to my autism. I consider it far better to change their treatment of me than to change my neurological structure.
“Okay, so, reading the comments here, I get this out of the whole mess: “I don’t want a cure so you can’t have one either”
You *did* see the part where he’s promoting prevention of ALL autism, for *everyone* right? A way to treat the unborn? And you are aware that many people fear the prevention would be selective abortion right? Look at the stats on aborted babies with down syndrome. And look further into yourself and tell me, who are you to say that someone’s life is *lesser* than anyone else’s simply because they have more difficulties to confront?
I’m not saying the value of anyone’s life is lesser because of a disease. Personally, I’m an rather arrogant — I think even with a brain injury, I’m still smarter than your average joe. Your abilities or lack thereof have nothing to do with your value as a human being. What DOES count is the way you treat other people.
We aren’t talking about selective abortions — that has nothing to do with living with or curing autism. What we are talking about is some way for people with autism to make the choice for themselves.
As for the stats on aborted fetuses with down syndrome — it isn’t my place to tell a mother what she can and can’t do with her body. If I found out I was pregnant with a child with a serious disability, I can’t say I wouldn’t consider having an abortion myself. My daughter is currently undergoing testing — we’re afraid she might be autistic. She’s got great social skills, but she also has a freakish desire for routine, and any variance from that routine results in the violent outbursts typical of someone with autism. Am I going to love her any less if she is autistic? No. She’s still an amazing and smart little girl, and she still means more than anything to me.
But you’d better bet that if she’s going to have the kinds of issues that Justin was talking about — if she can’t potty train, or starts hurting herself compulsively, or if she can’t get her words out completely, or ends up in special ed, not because she needs some extra help, but because she can’t show everyone how brilliant she is, I’m going to be sad. I’m going to worry about her that much more. My argument is that you do not have the right to stifle science because you disagree with it. You do not have the right to tell me that my daughter has to suffer because you think that autism is a great and wonderful thing. TBI has its wonderful aspects too, but that doesn’t mean it doesn’t come with negatives that make functioning in society difficult.
Remember, this is about being a good, decent human being, and allowing people freedom of choice, if you take issue with people’s rights to make their own decisions, then you are making the assumption that some people are lesser than others, not me.
As for curing it prenatally, why the hell not? Again, mama’s choice. Parents are supposed to be responsible for making the best possible choices for their children. I worry about mine, and you damn well better believe that I’d do anything in my power to help her succeed.
And he isn’t talking about identifying autism prenatally so the woman can make a choice about her own body and decision to give birth, he’s talking about curing it — could be as simple as a test that says “hey, your kid is autistic, take this pill twice a day for a week, and your child will face fewer problems, fewer difficulties, and have an easier time with social contact”
I want the right to make decisions for myself. I want everyone else to have that same right. By giving people that choice, you are empowering them, not demeaning them.
I’m an adult with ADHD. It’s frustrating. I’ve been on both side of the fence when it comes to deciding is this an illness or a gift? Honestly, I don’t think we should drug kids(for ADHD) and I won’t take drugs myself(for health reasons). BUT, if I could be cured of my “symptoms” (the things that make life difficult for me) and it meant I wouldn’t know a paintbrush from a pixel I would take the cure. I’m with Jason. “Happy” Autistic people should not block the chance for a cure for others.
Autism isn’t a disease, illness, or injury, and while it’s classified medically as a disorder, that’s a classification that many autistic people protest against.
“Curing” autism isn’t about making life easier for autistic people. Of course research should continue to be done on ways to make life easier for autistic people, to help them learn what skills they may need in life.
But that has nothing whatsoever to do with being “cured.”
Autism is a physical, neurological condition of the brain. Autistic brains have more white matter and more widely-spaced neuron clusters than non-autistic brains. Autistic neurons fire differently than non-autistic neurons. We are physically different. Even if it were physically possible to somehow change an autistic brain into a non-autistic one, it would mean that everything about how we think, feel, interact with the world, would change. We would cease to be ourselves and become different people in the same bodies.
As to a parent’s “choice,” it is one that many autistic people, who have survived various attempts to “cure” us in our childhood, consider a harmful, abusive choice.
Would you defend “parental choice” to send a minor child to reparative therapy for being gay? Even though it doesn’t work, it is harmful, and the overwhelming majority of gay people want to be accepted as they are, not “cured”? There is no difference, except medical classification.
Gays, blacks, minorities — they don’t have trouble controlling their bowels. They don’t have compulsive and damaging behavior like biting their arms. If it was just a little social awkwardness we were talking about, or a different way of thinking about things, your argument would have validity.
What about schizophrenics? Would you support a cure for schizophrenia? Schizophrenics aren’t neurotypical. A lot of them are a danger to themselves though when unmedicated. Schizophrenia, untreated, turns into a pretty dangerous thing. Would you support them for being “different?”
Autism doesn’t cause lack of bowel control. Certain co-existing conditions, IBS, things like that, might. These things, bowel problems and other physical issues, can be treated medically. I have no objection to research to improve the treatments available for these physical conditions, or to “curing” them. (I’d have a strong objection to prenatal testing to selectively abort babies with digestive problems, however.)
Biting one’s arms isn’t that bad. Really. I do it (and no, don’t want to be cured of it); lots of people do it. The harm to one’s health is less than the harms of drinking alcohol, smoking, lack of exercise, plenty of other perfectly legal behaviors that adults are free to indulge in, however unwisely. Sensation-seeking behaviors like self-biting are stigmatized far, far out of proportion to their actual harm.
As to schizophrenia, I have no objection to medication, voluntarily taken, to help schizophrenic people function. I have no objection to medication, voluntarily taken, to help autistic people function, either, so long as it’s a true choice.
Other kinds of no-longer-pathologized minority groups did, at one time, impede functioning, however. For instance, when homosexuality was classified as a mental illness, it actually did, in the society during that time, impede functioning. Being a “functioning member of society” in good standing included more-or-less mandatory marriage to someone of the opposite sex (to which, an exclusively same-sex orientation was a legitimate impediment). But society changed. We broadened our concept of “functioning” to include not only gay people, but single-by-choice people, divorced people, and others who did not fit the mandatory-marriage life.
Today, our idea of “functioning” includes relating to others in certain ways that autistic people have disproportionate difficulty with. We can do what we’ve been doing for the past 50 years, try to change autistic people. Or, we can broaden our minds and change our idea of “functioning.” We can recognize that a person who, for instance, communicates only by typing instead of speaking, or who has odd behaviors, or who focuses disproportionately on certain interests while ignoring others, is as much capable of being a welcomed, contributing member of society as anyone else.
There’s certainly nothing “liberal” about pathologizing difference— as slaves were once pathologized (drapetomania), as “hysterical” women were once pathologized, as gays were once pathologized. Autistic civil rights and acceptance are no different from the civil rights and acceptance of any other social minority group.