“When parents say, 'I wish my child didn't have autism,' what they're really saying is, 'I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.' Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your findest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”—Jim Sinclair, Loud Hands
"But Isn't a Cure For Autism a Good Thing?"
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.
Parent vs. Parent
Let’s take two allistic parents. One has a child with autism. One has an allistic, neurotypical child.
Allistic parent of the allistic, neurotypical child loves dance. The parent has always wanted to be a dancer. They never had the chance. Now, they have a child. A child that they will force into dance.
The other parents hear things such as:
“I don’t care how tired you are! You will practice for an extra two hours because if you don’t, you’ll be a failure!”
“It hurts? It hurts? Don’t cry like that! The fact that it hurts is a good thing. It means your doing it right! I don’t care how much it hurts!”
“Stop that. Stop that right right now! You’re doing it all wrong. It’s such an embarrassment!”
Other parents, watching would feel for the child they would say what a terrible parent they had. How it was wrong to force a parents dream on their child.
They would whisper. They would gossip. They might try and help the child, in some way. They might talk to the parent.
The above is what autistic children, young adults and adults go though. Every day.
Every day, an autistic’s exhaustion over “therapy” is ignored.
Their pain? Ignored.
Every day, an autistic is told that what they want to do is wrong.
Every day, a parent complains about how embarrassing their child is.
Every day, the parent of an autistic child cries about how much it hurts to see their dream for their child…”crushed.”
And yet, it is accepted. It’s encouraged. It’s praised.
A parent who cannot accept their child who doesn’t want to dance? Abusive
A parent who cannot accept their child that is autistic? A hero.
People without autism (or, allistic folk): Please stop ruining my tracked tag.
I’m autistic. Yes, that’s right, a real live autistic adult who’s using the internet unsupervised. So, unsurprisingly, I’ve tracked the autism tag to find other folks on the spectrum to follow, etc. But y’all are really fucking the tag up. The vast majority of the posts tagged ‘autism’, are really fucking offensive to most of us autistic activists. Oh, and that’s people with autism who are autism activists, not allistics who try and get us cured, by the way. On a side note, please stop calling yourself ‘autistic activists’ or ‘autistic parents’ when you don’t actually have autism.
Anyway, you allistic folk in my tracked tag feel the need to post, generally, four common kinds of things that most of us angry angry auties don’t really like to see that much. These are:
- “My child was ‘stolen’ from me by autism, my life is terrible, my child is a burden”
- “Vaccines are pure evil. They cause autism. WAAAAA BIG PHARMA!!!!”
- “All autistic people are geniuses and are special snowflakes and are wonderful! I’m a good autistic parent!”
- “Here’s a picture of an autistic kid. Look how terrible his life must be! Hope you feel guilty about crying over Harry Potter!”
And seriously, y’all need to stop. Let’s look at what’s wrong with these kinds of posts:
- Your child is a human being with feelings and emotions just like you. They may not express themselves quite how you’d like, and yeah, your selfish cookie cutter dream of having a kid to best your sister’s kid or to live through is long gone, but stop treating them like a punishment. Learn to realise that your kid is actually a cool little person.
- The studies linking vaccines and autism have been debunked. Especially the MMR one. Stop buying into conspiracy theories. For that matter, stop acting as though dying of measels is a better fate than being autistic.
- Saying all autistic folk are magical or whatever is like saying all Asians can do math. It’s still offensive and it’s still a stereotype. Some of us are geniuses, some of us are lovely people, yes. But like with allistic folk, some of us aren’t geniuses, and some of us are assholes.
- People with disabilities and medical conditions do not exist to make you feel better about yourselves. Stop that.
Now, think about this, go and read up about how fucking evil Autism Speaks is, and stay out of my tracked tag with this shit. I swear I’m getting a goddamn embolism every time I read that thing.