Love, Devotion, Hope, Prevention, and Cure

I sit in front of a computer screen, reading the text of a letter from C.A.N. (Cure Autism Now), a prominent cure-oriented autism organization. In a message congratulating people on taking steps toward the genetic elimination of autistic people -- people like me -- from the planet, it says, "...the answer is always love and it is always overpowering." Somehow, although I can agree with the statement about love, I cannot reconcile it with autism prevention.

The message also talks of pain, and it talks of devotion. It talks of hope. It talks of parents wishing to eventually hearing the voices of their children, "strong and clear". Since the written word really is my primary voice, I would urge them to take a moment right now, put aside the ideas they may already have about autism, and listen to my voice.

Autism is not a peripheral feature that I can discard. Autism shapes my mind, my personality, my senses, my values, my goals, and my dreams. Autism is the source of my difficulties and my strengths, and of the unbreakable ties between them. Autism is a significant, dominant, and irrevocable part of what makes me, and my closest friends, unique.

If love is valuing what makes a person unique, special, and beautiful; if devotion is a profound dedication to someone as they are, then curing or preventing autism is the antithesis of love and devotion. One cannot love someone and be devoted to them, and simultaneously wish that they were someone else or that people like them should not be born. And those are exactly the messages that cure and prevention send out.

The letter I read, in addition to love, devotion, and hope, also talked about pain. I know about pain. I know what it is to grow up in a world that does not value my kind of person. I know what it is to be considered wrong, backwards, defective, valueless, even diseased, for being exactly who I am. I know what it is to be methodically trained out of my natural and logical behavior patterns, to the point of excruciating overload long after the fact. I know what it is to be ignored, misunderstood, ridiculed, threatened, beaten, drugged, and nearly killed, often by people who said they were trying to help me. I know what it is to read in the papers that people who want people like me eliminated are acting out of love. To read that when a lot of people like me are born, it is called an "epidemic". I consider these things to be extremely painful, and unfortunately all too common. But they are not the result of autism. They are in fact the result of ideas similar to the ones that make people seek out prevention and cure -- the idea that it is better to eliminate autism and autistic people rather than adjust to our existence.

I also know what it's like to not have a job or attend conventional school, to need a substantial amount of assistance in day-to-day life, to not be married, to not relate well to people, to have a decreased sense of danger, to not be able to talk, and so on. But these things, although they are quoted as being the source of pain to many parents, are much less of a source of pain to me, and most of my pain in this respect is much more based in society -- its prejudices and its unwillingness to accomodate people like me -- than in autism. Even many of my intrinsic difficulties as an autistic person could fade into the background given the proper societal setting. Any pain that is related in some way to autism, I would still take any day compared to the idea of not being autistic. I like what I am, in all of its flawless imperfection.

If it causes you pain that your autistic child does not have opportunities in this world, then the solution is to work to create the opportunities, not to eliminate the autism. If it causes you pain that you cannot understand your child, then read Jim Sinclair's article Don't Mourn for Us, and use it as a beginning, a guide to understanding and accepting your child. It may be painful to read, but many parents I talk to have found the experience well worth it.

Talk to autistic people -- communicate with us as if we were aliens, not as if we were damaged versions of yourself. Forget what you think you know about us, and learn about us and, most importantly, from us. You might be surprised, at the combination of differences and similarities between what we want in life and what you want in life. Approach us without the preconceptions of what you have been taught about autism, and what you believe about people in general, and you will see a lot. Explore the uniqueness and beauty that is autism, in all its forms, respect it, and don't try to eliminate it.

The world as it is now is extremely difficult for us. This is only partially related to autism itself.

Imagine what it would be like in a world where people were valued as who we were, not what we could do. Where the very real differences were not seen as defects, but valued instead. Where equality was not based on similarity. Where the intrinsic difficulties we have, no matter how great, would be accomodated so seamlessly that you would not have to worry what would happen to your autistic children when they grow up, at least no more than you would for your normal children. Where our lives were considered of value simply by virtue of being lives, not by virtue of how much work we could do at a job or how much help we need from others. Where, upon finding out that your child is autistic, instead of the grief or horror you may have felt for your child's future or apparent incomprehensibility, you would be immediately excited and grateful for your child's uniqueness. This would be a much better place to grow up autistic, or to raise an autistic child. This world is possible.

However, when people work toward the cure or prevention of autism, they are working directly against that world's existence. They are, whether they are aware of it or not, sending out a message that autistic people are defective, that there is something wrong with us, so wrong that it is better to eliminate the key features of who we are, even to genetically screen to prevent us from existing, than to create a valued place for us in this world. The act of taking steps to prevent our existence, in itself, devalues us so completely as to be incompatible with a world in which we are loved and valued. The act of trying to make those of us who do exist think and act in ways that are more comprehensible to others but still incomprehensible, alien, and unnatural to us, only adds to that devaluation.

If you are working toward cure or prevention, and believe that you are acting out of love or devotion, please realize that the love and devotion are dangerously misguided, and change what you are doing. It is extremely difficult to realize that what you have been doing is hurting other people, particularly when you think you are acting out of a strong love and value for the same people. But working toward cure and prevention is hurting a lot of people, and a lot is at stake. What may be thought to arise out of love and devotion, winds up bearing a striking resemblance to hate.

This is why it is so important to stop doing it, no matter how difficult it is, and no matter how much effort you have already put into it. There is no need to give up the effort. There is no need to think that by giving up the fight for a cure, that you are giving up on your child. On the contrary, you are just beginning to work for your child instead of against them. This is a wonderful thing. That same effort, love, and devotion can be used in other ways, that will actually be much more beneficial for you, your child, other autistic people, and people in general.

Discard the notions that you may have been taught about autism. Discard any similar notions that you may have arrived at on your own. That autism is a disease or a defect, that autistic people are damaged versions of you, that the lives autistic people lead are intrinsically worse than yours. That autism only creates negative traits. That autistic people who can communicate in conventional ways are terribly different from autistic people who cannot, and therefore worth discounting. That medical professionals or parents somehow automatically have a better understanding of the realities of autism than autistic people do. These things are false. Discard the notion that autism is solely behavior or a removable or detachable piece of a person, and realize that autism pervades everything about an autistic person. Discard all of the other preconceptions you may have, about autism or even about people in general. They may not apply to autistic people.

Look instead at what is in front of you. Look at your child. See the absolute, unparalleled, unique beauty in front of you -- a person that has never happened before, and will never happen again. Recognize, and value, the differences that make your child who they are, and that autism is an indispensible part of these differences.

Then it will be more clear, that to "cure" autism, if it were possible at all, would be to remove an indispensible and unique part of what makes someone who they are. That to "prevent" autism, is really to prevent people -- autistic people, your child included -- from existing. That you cannot remove autism without removing a person, or systematically train an autistic person to behave non-autistically without turning them against their own nature.

If you must hope for something, and I think hope is vital, hope for a world that accepts all of us. Hope for a world with a genuine and dignified place for the autistic person, and for every other person. Hope for a world like the one I describe above. But don't hope for a cure.

If you must fight something, there are unfortunately plenty of things to fight. Fight lack of opportunities for autistic people to learn and live in ways that we find meaningful. Fight the lack of respect for autistic lives and the choices that autistic people make about our own lives. Fight prejudice and discrimination against autistic people. But don't fight autism itself.

If you love us, don't try to cure us, and don't try to prevent us.

Learn from autistic people. Learn to love us as unique beings, not as damaged or defective versions of yourselves. Learn to be devoted to us, instead of being devoted against us. Learn that being devoted against autism is to be devoted against us. Learn to listen to us, when we speak of these things, and of what we want. Learn to not assume that what would be best for you would automatically be best for us, or that what you want for us is what we want for ourselves. Learn to assume nothing, when it comes to our knowledge, needs, or desires.

Learn to devote yourself, not to the elimination or prevention of us or our uniquely autistic ways of existing, not to making us act more normal or comprehensible to you, not to relegating us to somewhere out of sight, but to helping to create a world that has a place for us alongside you. Learn to value our differences from you, as strongly as you would instinctively value our similarities. Our differences are a vital part of us.

Working toward the creation of such a world, taking these steps, is an act of devotion and love, in a way that working toward curing or preventing autism can never be. It is devotion and love not only to autistic people, but to all of humanity. This is real devotion. This is real hope. This is real love.

Amanda Baggs

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