Friday, September 17, 2010

Do "We" Need A Cure?

Autism-related websites are filled with parents of autistics clamoring: "A cure! We need a cure!" Good, I thought, when I first read such statements. These parents love their children and want to give them a family whose members are more like them. That's why they are hoping a cure for their neurotypicality will be found soon, so they can join their children in the world of autism. Just like the loving parents in Ray Bradbury's story about a child who was born into a different dimension.

Soon enough I realized that the "we" in these "We need a cure!" slogans refers to these parents' desire to pump their children full of drugs in order to make them more "normal." When they say "we", they mean that they have decided that their children need to be cured from their way of being. It's hardly surprising that a child would want to escape to a world of her own in a family environment where her parents are incapable of seeing where they end and she begins, where they confuse their own wishes with her needs.

The line of reasoning these parents offer for wanting a "cure" for their children is that it pains them to imagine their kids having to navigate the world that is hostile to autism and difficult for autistics to live in. They forget to mention, of course, that they are the ones who created this unhospitable society and keep it in place through their belief that there is something intrinsically wrong with the autistic way of being.There is no difference between them and the parents of gay or transgender children who subject their kids to all kinds of inhumane "treatments." You'll never hear them recognize their own homophobia and transphobia. "Oh no, I'm not homophobic," they'll say. "But so many other people are and I want to protect my child from their hatred. That's why I want to do all I can to make him not gay." A similar way of thinking inspires people who send their teenage children to plastic surgeons. "I love my kid no matter how she looks," they claim. "But it's objectively easier for a woman to live in our society if she has a bigger chest and a straight nose. I'm only doing this for her own good."

This is the pinnacle of consumerism. You create a child (who, mind you, never requested to be brought into this world in the first place) and then you find the product you got unsatisfactory and start paying for improvements. The "improve-your-kid" project allows one to consume an ever-growing number of goods and services, which is the only thing that can make a consumerist mentality happy. The plastic surgeons, sellers of treatments for homosexuality, pill-pushing psychotherapists, the pharmaceutical companies are always ready to oblige. And it's not that hard to find something worng and in need of a "cure" in your child if you look hard enough. She is too boisterous and active? Oh, she must have ADD, let's pump her full of Ritalin. She is too quiet and solitary? Oh, then she must have autism. We need a cure! We need a cure now!

The funny thing is that if autism were "cured," there is absolutely no doubt in my mind that the very same parents who are now clamoring for the cure for autism would find something else wrong with their children and start demanding a cure for that.


Izgad said...

"Cure the parents."

I like that idea. :)

eric said...

Your post gave me a flashback to my childhood, completely, except that my parents didn't know it was Asperger's, and of course it was my moral responsibility to change. It's no secret why, in our over-conformist, puritanical culture, there are scads of books advising neurotypicals on how to maintain relationships with us Aspies, but nothing on how we Aspies can cope with a world that makes so little sense to us. We are the ones who are supposed to change and adapt (go in the closet, really) and if we don't or can't, then it's our own moral failing.

It's apalling just how selfish and harmful parents can really be-- to try to engineer (or even expect) the "perfect" child is simultaneously an indication of one's own narcissism, and of just how meaningless one's own life has become in following the herd.

Justin said...

The fear surrounding autism is one of the reasons for the hysteria that the diagnosis often provokes in parents. Even individuals diagnosed with low functioning or classic/Kanner's autism can have a decent quality of life if parents and the local community are willing to learn rather than respond with fear.

However, my experience of autism isn't the same as someone who has more profound deficits. I don't want a cure. I don't mind that I can't stand the feel of denim. I do wish that seeing people wearing denim didn't make me slightly sick to my stomach.

I also went through a three week period where it was very difficult to do anything that wasn't playing Fallout 3 until I located every single quest and played every conceivable scenario. That kind of obsessive focus is great when I want to learn about stable isotope analysis but sometimes I'd love to temporarily have normal executive function.

lurker said...

Your discussion of cure makes it seem as if you have no idea what the context of the overall issues is, and what many are going through. Eventually growing up to lack basic skills and being dependent on others to just live, while not having the ability to do things others can, is not a different way of being that should be sentimentalized.

Clarissa said...

Of course, I have no idea what I'm talking about. I have only lived with autism my entire life. Just like every other person who commented in this thread. Which you would know if you took the time to read what you are responding to.

So I'm wondering, who here doesn't have basic skills and can't do simple things that other people can? Like read before posting comments.

Justin said...


What many parents are going through can best be described as fear, paranoia, hysteria, ignorance, and fear of those who are different from the majority.

I've lived with autism my entire life. Up until I ran afoul of a supervisor who took severe advantage of my inability to understand nonverbal behavior and social cues, I was successful at pretty much everything I've wanted to do.

No, having autism is not a picnic. Not for me. Not for someone who experiences sensory issues so severe they're prone to self-harm. It's not a picnic for parents who are unwilling or unable to raise an autistic child, either.

I also have cerebral palsy which arose from severe right hemisphere brain damage at birth. I grew up being unable to do things that others could. I still can't drive a car, and living in a mass-transit averse country like the United States, that makes life a little tricky.

Yes life has been difficult. My last supervisor took advantage of the social naiveté which she knew to be a hallmark of my form of autism and nearly ruined my career because of it. That has been difficult. But I am very glad that my parents chose to "sentimentalize" my way of being and sought to understand both my autism and my physical disabilities so that I could be successful.

I can focus, analyze data, and recognize patterns in a way that is neurologically impossible for someone without autism. Do you think I've ever told my less intellectually capable colleagues that they should be "cured" of their inability to do these things? Instead I've patiently explained to them concepts, patterns, and trends whose recognition and analysis I've found trivial.

While I appreciate that many autistic people would enjoy not resorting to self harm and would like a way to ameliorate some aspects of autism, I cannot appreciate the hysteria-driven perspective that autism is inherently a bad thing and autistic people are inherently less worthy than others.

Clarissa said...

Thank you, Justin, for articulating this so beautifully. This is exactly how I feel on the subject. I'm so tired of people clucking over us and pitying us for being doomed to unrelieved misery. There are many challenges involved in being autistic. But many of us confront these challenges courageously and lead good, contented lives. I also hate it when people say to me "Oh, so you are disabled?" I can do things many NTs can only dream about. So who's disabled, I ask. Yeah, I can't drive a car, big deal. But I can see the entire picture of Hispanic Civilization in my head with dates, numbers, economic conditions, political movements, artistic achievements, demographic data, etc. In 3D. And in color.

So who's disabled, I ask you?

lurker said...

Clarissa, I read what you wrote, and didn't like that you didn't talk of the real issues. I wish you wouldn't act as if those issues aren't there. You being autistic doesn't mean you have had the same experiences that other autistics have had. Many others on the spectrum aren't as able and intellectually privileged as you are, and don't have practical reasons to contemplate their basic functioning issues along the same lines as the societal issues you mentioned.

Justin, I haven't understood how the majority/minority aspect really helps to explain the issues involved. You know there is a lot of suffering going on with the difficulties, so I don't get why you repudiate the fear and emotional uproar involved, as managed and directed as those reactions need to be. I acknowledge you have your own perception of all of this, but I'm repelled by the tendencies out there to sentimentalize and describe such difficult lives with so much euphemism. I see that outlook as degrading and ignoring of the basic ambitions and personal will of those considered in such a way, while smoothing the reputations and perception of those who are contrasted to that outlook.

All I wanted was to have a decent living, to do basic things when I wanted to according to my varying interests, and to achieve and live my dreams. The saccharine attitudes some express, haven't made me feel better in any way. No benignant attitude will console me as I'm kept away from genuine and autonomous interaction with society, and as I try over and over to do things, only to keep messing up, as the way in which I'm on the spectrum leaves me with minimal ability. I don't think autism is inherently a bad thing for the really high-functioning ones who turn out with the capability of being very successful and independent. The hysteria wouldn't exist if all on the spectrum had those intellectual resources.

Clarissa said...

lurker: I read your blog and I understand that what you are dealing with is tough. In every single post I ever wrote about autism I mentioned that every person on the spectrum manifests differently and my experiences are in no way indicative of what everybody else experiences. However, I and Justin and many other people feel as bad as you do when their experiences with autism are dismissed as irrelevant.

I take exception to this concept of "intellectual privilege" that I supposedly have. I don't understand what it means and I don't think it's valid.

I think that my experiences and yours don't have to be antagonostic where they can be complimentary. We, the autistics, should stick together and work out common strategies of dealing with what we face on a daily basis. This is what I have been trying to do with all my posts on autism.

When you say " I try over and over to do things, only to keep messing up", believe me, I hear you. I know this feeling only too well. If you feel like sharing what those things are, either here, or on your blog, or in personal correspondence, we could discuss that and see how you handle those things and why they don't work out. I have no idea whether my suggestions can help you or if your suggestions can help me, but we could discuss them. I know how frustrating this can be, believe me, I do. And I also fully recognize that things have been MUCH harder for you than for me through no fault of yours. I admire your courage and I understand your frustration.

Clarissa said...

Just one more thing to make my position on the "cure" completely clear. If the "cure" were to appear, I would not take it. I am at peace with the limitations of my autism and I dig the positive aspects of it way too much ever to give it up.

If, however, an adult autistc (not an autistic's parents, mind you but an adult autistic like, say, lurker) chose to take the "cure", I would absolutely support that decision 100%. I respect completely a person's choice not to live with autism. I don't, however, respect a parent's choice not to live with their child's autism. You can make this decision for yourself. But not for another person.

lurker said...

I say things like intellectual privilege as I've seen such large differences in ability between individuals, and through realizing that only some of them have high levels of intellectual abilities and only they get to benefit from them. I wouldn't mind the idea of sticking together to come up with ways to deal with things. I'd like the chances for opportunity expanding change to be accepted within that effort. I appreciate your acknowledgment of my situation and would like discussing things with you.

I haven't been intent on trying to cure you. Changing who you uniquely are hasn't been on my mind and hasn't been part of the goal. I don't want to control anyone. I don't think parents are trying to do those things either. There are times when I don't like how they describe their children, but I think lots of them basically want their children to grow up to live well and independently. I doubt they're trying to remove anything cherished from them. I only see cure as bringing aptitude to those who don't yet have it. I doubt it would have the effect of diminishing unique identity.

Justin said...


I was trained to think like a cultural anthropologist, so that's how I think about these things. Power, dominance, hegemony, there are many of these concepts at play when discussing the disabled versus the abled. Fear of difference is a part of the human experience; it's why we have racism, homophobia, religious intolerance, and xenophobia to name a few things. I could go on a long ramble about the concept of Other, but I don't feel like trotting out de Beauvoir or Said.

Parents react particularly strongly to autism because they're afraid. Many parents are often misinformed, much like my own parents were when I was born with cerebral palsy and a largely nonfunctional right hemisphere.

Theoretically, you see, my life was supposed to be some sort of horrific near vegetative state; I was never supposed to do anything or be anyone other than some drooling simpleton. Fortunately, my parents response (after recovering from shock) was to seek information and education.

There's a lot of misinformation being put out by organizations like Autism Speaks about what autism is and how people with autism experience the world. You see Autism Speaks fund commercials that promote the idea that autism stole their theoretically perfect non-autistic child from them; you also see them promote the idea that autism means not living a "full and normal" life.

When I said that autism wasn't a picnic, I wasn't being literal. I very nearly had my career ruined by my last supervisor because she didn't like my emotional response to a situation (I didn't have one to speak of and she felt I should have).

I know what it's like to not know how to function in social situations; new situations are terrifying, and variance from routines can cause anxiety on a good day and a complete meltdown on a bad one.

Sometimes life with autism sucks, but it would inarguably suck less if neurotypical people wouldn't act like autistic people were some sort of abhorrent abomination that needs to be exterminated instead of understood.

There are lots of little tips and tricks to getting along in the social world and it unfortunately also involves a measure of luck. There's a forum called Wrong Planet that's pretty good; there are many people at all ends of the spectrum as well as NT parents and interested others.

Among other things it helped me to learn what people mean when they say you can't have your cake and eat it too.

If you do want to talk about what you're experiencing, I'm also happy to talk with you.

Clarissa said...

I simply couldn't agree more with everything Justin says.

I'm sure we can all find common ground because as autistics we have a lot more in common than what separates us.

Anonymous said...

There should be a distinction here between different degrees of "autism" (Autism is a term used too widely now to describe unrelated conditions, I believe). When we're talking about a "Rain Man" situation and person unable to take care of themselves--obviously, there's a need for a cure. When we're talking about high-functioning/Aspergers, that's a different story. Main thing a person should be able to be independent and function on their own in society. Taxpayers don't owe to take care of anyone, plus this economy will likely fall apart in next 20 years, so people can not expect to be taken care of--even healthy people face enough trouble surviving and will face more with impending economic disaster. The base line should be "can this person (will this person) function and support themsevles fincancially when they grow up?"

Clarissa said...

And if they can't then what, shoot them? What is your suggestion?

As to the supposed absence of money, are you kidding me? There are trillions of dollars for Pentagon's new toys but there isn't enough money for people? When the taxpayers stp supporting lankfein and his rich buddies, when the taxpayers stop paying for Pentagon's insanity, there will be money enough for everybody.

Getting rid of people because they are not as "fit" as you would like them to see is fascism.

If Goldman Sachs can expect to be taken care of, then why can't normal citizens, huh?