I’m more frightened than I’ve ever been in my life, more than I ever thought was possible. More scared than I was before I graduated college, so afraid of failing at adult life that I considered suicide and extreme self-mutilation. More scared than I was in my freshman year of college, when I was so lonely and isolated that I spent months alone in my dorm room, fighting back tears. It feels like the bottom’s dropped out of the world and everything I’ve ever cared about is crumbling beneath me, and I’m hovering over the abyss, not knowing whether I’ll fall. And it’s the not knowing that hurts the most.
You see, today I found out that the FDA approved clinical trials using cord blood to “cure” autism.
Those of you who’ve read my previous posts on autism will know that I am not a supporter of the movement to cure autism spectrum disorders. Those of you who haven’t may be wondering why I’m being so melodramatic and pessimistic about such a good thing. Now those poor autistic children will be able to communicate, you may be thinking. Now they can make their needs known and they won’t be upset or overstimulated and they can go into mainstream classes. Now they can function in society. And Lauralot, no one’s going to force the cure onto anyone! Why are you being such a naysayer? Only good can come of this! Even if it fails, it can pave the way for stem cell break throughs to help treat cancer or AIDs! You should be happy!
No, I shouldn’t, and no, I’m not. It’s a horrible feeling, realizing that your culture, your community, and everything that makes you the person you are is just a few scientific discoveries away from genocide. My universe has a very real threat of complete annihilation and it’s terrrifying. It hurts to feel this helpless. It hurts more than anything I’ve ever known.
If you are the parent, sibling, other relative, friend, or caretaker of an autistic individual, and you’re reading this in indignation, disgusted that a high-functioning individual such as myself who can communicate and hold a job is daring to speak for the autistic community, please, please read this post to the end before you pass judgment.
I know how hard it is to have autism. I know how it feels to seem trapped in your own body, upset or in pain and unable to express it. I know the frustration of missing social cues or motor skills that everyone around you seems to grasp so easily, I know how much it hurts to be the odd one out despite your best efforts and the support of others. I know how it feels to see someone you love in pain, to wish that you could rid the world of obstacles for them and make their lives easy. I know how much it hurts to see someone suffer for things they can’t help.
But that’s the thing about autism. For all the things it makes difficult, there are also positives. They may not seem evident, particularly if the individual can’t communicate verbally, and they may not even be recognizable as a result of autism, but they exist. My attention to detail that helps me in writing and costuming. My ability to memorize which has given me a life long love of books and the skill to recite everyone’s lines in the class play. The seemingly endless amounts of knowledge I can store about things that matter to me. My wit, my humor, my passions. They’re all a part of me, and they’re all a part of my autism.
Autism isn’t like epilepsy or asthma, or other disorders. Autism literally molds a person’s mind. Everything about how I view the world is in part due to autism. Autism isn’t something that happened to me. I wasn’t a normal little girl until autism snuck into my crib one day and changed my life. I am autism, and it’s me. We are inextricably linked and we can’t be separated.
Which brings me to my greatest fear about a potential cure: Curing autism will effectively kill the autistic person.
Their life won’t end, of course. They’ll go on breathing and talking, they’ll go to work or on dates and take vacations to Disney World. But the person that you knew, the person with autism? That person is gone forever. Autism shapes everything about us, and to take us off the spectrum would be to take us out of our bodies entirely and put a new person in our place. Now, there are autistic individuals who are fine with this idea. They are so unhappy as they are at present that they would willingly become a new person before they would continue living as they do now. And that’s fine. If a cure is available to them, and they are willing to sacrifice themselves to reap its benefits, I have no right to stop them. But that’s their choice, and theirs alone, to make.
But if a cure were to be available, it won’t be just their choice.
I’ve been told that no one will force this cure on autistics. But in these clinical trials, they already are. The 30 children being tested range in age between 2 and 7. I don’t know where others draw the line, but I say that to consent to a procedure that would completely alter a person’s brain structure and absolutely everything about their personalities and how they perceive the world, they ought to at least be eighteen years of age. Instead, they are guinea pigs for the government and for parents wiling to subject them to unproven, potentially dangerous treatments.
But those are their parents, you may be thinking. Parents have the right to make medical decisions for their children. Yes, they do, but that doesn’t mean they will always make the best or most informed choices. Organizations such as Autism Speaks love to frighten parents into believing they need a cure by painting autistics as burdens who will tear families apart, as helpless children who can never care for themselves. Parents are so frightened of their children “catching” autism that they are willing to skip vaccinations - buying into a proven false myth linking immunizations to autism - and potentially let their children catch fatal diseases as a result.
Just because a parent can make a decision doesn’t mean they should. If I had a child, I could choose to have the child’s legs replaced with prosthetics on the chance that he may develop arthiritis when he grows up, but that wouldn’t make it a reasonable thing to do. And if you find that comparison ridiculous, well, I think rewriting a person’s brain so they can have an easier chance at life is just as absurd as replacing limbs so they can have an easier chance in case they develop arthiritis.
Still, the fact that an autism cure is being sought proves that my opinions on this topic are not the mainstream view, and so if a cure is found, many parents will cure their children. Autistic people will become a dying breed, and autistic parents who choose not to cure their children may have their ability to provide for a child brought into question. Government accommodations for autistics will dry up, because why should valuable money be wasted on those who refuse to be fixed? Attempts at integrating and supporting autistic individuals in society will be abandoned, leaving us even more ostracized and feared than we already are.
My question is, why should money and limited medical resources be wasted to “cure” something that people can live long and fulfilling lives with? Why are we as a society so afraid of autism? This isn’t a hypothetical discussion for me. It’s my life. It may not be perfect, and sometimes it may be hard and painful, but it’s the only one I’ve got, and I still love it, rough edges and cracks and all. It is not that I don’t acknowledge that autism can make life hard and painful. It’s not that I don’t acknowledge that some autistics want a cure.
But I don’t want my life and community to die to make things easier for others. I don’t want to have to destroy who I am or watch people like me be destroyed in order to better “fit in,” to make everyone’s lives easier. And the thought that these things are all too likely chills me to the bone.
Please listen to the autistic community. Please take our considerations in mind before you hope to cure your loved one. Please remember that, autistic or not, we are still people, and this choice should be left up to us, and only us.
And please, please, contact the FDA and let them know that the autistics should be the ones making this decision.
Edit: I’ve revised this post to change the metaphor I made regarding altering a child’s mind/body without consent. My original metaphor was hastily constructed and I was informed that it could be read as cissexist. I apologize to anyone I insulted with the original post.