People say I exaggerate, that I overstate it, that my son isn’t “as bad as I say he is” because I use the word autism when I name our difficulties. And it is that my son is, in a very evident way, intelligent and extroverted… He can´t be “that” they don’t even dare to name.
And I think it is because we fear words and because of white and black thinking. And the popular perception of autism is that of a person locked within itself, turning little toys and unable to take care of herself. And maybe in many cases it could be like that. But autism is an spectrum, we people experiment it with different intensities. To some it may be lived practically without being perceived, for others it would be terribly limiting.
And I can’t imagine the difficulties of a family having to live autism in its more limiting aspect. I don’t dare to judge those who in that situation wish for a cure.
And even understanding this, theorically, I can’t think of autism as a disease. And I believe that very bad damage is done with the statements of foundations who in the name of “autism awareness” reinforce the stereotypes and try to fix something that very probably is far from broken. They say autism is an epidemic, that because of autism, couples separate and families live a nightmare. They promote fear, inform from fear, they show a terrifying map of autism. When we think we should eradicate something “so bad” we don’t stop to think that that which is “so bad” may have had and still has an evolutionary advantage. I don’t think it is by chance that several of the big geniuses had traits typlical to autism. Maybe, as stated by Temple Grandin, without the autistic traits humans would still be in the caverns socializing by the fire.
Please remember maps are not realities. They are interpretations of reality, incomplete, limited and simplified. And a diagnosis is no more than a map. And just like a map of a country taken from outer space may be useful, it doesn’t give you the experience of living in that country, the knowledge of autism from the experts may be less useful then the experience of adult autistics.
I think that fighting for a cure for autism is like fighting for a cure for homosexuality. I also remember a story of an ancestor that, in his travels through the Colombian jungle, said to black people that they had their skin upside down and that he was going to bring a doctor to cure them. And that, even told gracefully, is cruel and reflects how intolerant we are towards differences. And if being autistic is seen as “so bad” and it isn’t visible in me or in my son, why do I choose to identify myself and him as part of a discriminated minority?
Because of how this society is, it is the experts belief that the ideal is that we “the different people” make an effort to “appear normal”, “so that society accepts us”. We should pretend to be what we are so that the majority does not need to bother, so they do not have to make an effort. And that way we can have the fantasy of having a better life quality.
Sorry, that’s what I’ve done for nearly 40 years, it doesn’t work. Living hiding who we really are for some of us means living without joy. Living according to others expectations means living deceived, living deceiving. I’ve written this before, the big changes in my life didn’t come from an effort to be better, or to belong, but from the acceptance of parts of me formerly denied, repressed and judged as defects.
I embrace autism, even if experts and not experts say that “the flaws” in my child are software and not hardware flaws. That he repeats the behaviors that worked for him as a baby. I believe what us difficult for us is much more complex than that.
And this happens because experts and other well-meaning people are based on a map. And today, thanks to the internet I have lots and lots of maps written, not from the theory of experts, but from sailors and explorers of autism, that know the territory because autism has always been part of their lives. The autistiscs are the real experts and their maps are more useful for me today than the psychiatric drugs and behaviorist therapies doctors once recommended to improve our life quality.