I’m autistic. I’m significantly disabled. I do not, and will not, have the same opportunities as my non-disabled peers. I have painful sensory issues, significant developmental delays, and zero friends at school. Many of my issues will likely be lifelong.
I also don’t want a cure for autism.
I know this might be confusing to some people. Life can be genuinely hard for autistics, after all. Young autistic children in particular are likely to struggle, especially if they have communication issues. And some autistic people have health problems that can truly be a nightmare.
However, I don’t believe that an autism cure is what’s going to make life easier. Why not?
I’m a modern woman.
I’m not a princess waiting for a prince. I’m not going to sit in a tower and brush my hair and sing about how I’m waiting for a savior. I’m not going to put my life on hold while I wait to be rescued.
I don’t need a man. I don’t need a cure either.
I’m not a victim, and I don’t want to be treated like one. Autism does not erase my agency nor my strengths. I’m grateful for what I have in life, and I don’t need more than what I have in order to be happy. (Though a little less anxiety and depression would be nice.)
Fantasizing over an autism cure would be no more productive than fantasizing over a man to rescue me. But even less realistic: I could probably get a man if I tried, but a cure is likely impossible. (At least, if my therapist with his doctorate in psychology is correct.)
I’m not willing to put my life on hold in order to dream about an unlikely possibility. Instead, I’m going to plan on leading the best autistic life I possibly can.
A cure doesn’t mean what you think it would mean.
Autism is deeply ingrained into my brain. It’s been there since at least the second trimester, according to researchers. How do you get rid of that?
- Destroy some percentage of my additional brain connections?
- Rip apart my brain and put it back together?
And then there’s the question of abortion.
I know, it’s a thorny subject.
When people say they are trying to find the cause of autism, they’re likely looking at genetic markers. And you can test the genetics of a fetus.
Given the climate of fear surrounding autism, if a parent hears “your baby is probably autistic,” what do you think they’re going to do?
They’re going to think that autistic kids are monsters, or violent, or causes of rampant divorce, or black holes of constant suffering. They’re going to be told that abortion is the only humane thing to do. And parents who choose not to abort will be blamed for bringing an autistic child into the world.
Many fetuses with Down syndrome are selectively aborted, and people recognize the upsides of Down syndrome. Autism is viewed much more negatively than Down syndrome. You can connect the dots.
So when I hear people talk about finding an autism cure, it scares me. Because a world without autism would mean a world without autistic people. And life would only be harder for the autistics who were allowed to be born.
A focus on cures can lead to unintentional harm.
If you’ve ever wanted an autism cure, I’m sure that causing harm is the last thing you’d ever want. You just want to help people and increase their happiness, right?
Unfortunately, tirelessly promoting a cure for autism can do the opposite.
People who want a cure can go to extreme lengths to get it. Some people are so desperate for a cure that they don’t stop and realize that they’re being scammed out of their money. Toxic bleach, chemical injections, and other dangerous autism “cures” can endanger autistic children while draining the pocketbooks of their families. Some cases have led to hospitalization or death.
And then there’s the self esteem issue. When autistic people feel like they’re not good enough unless they’re cured, then they’re going to end up feeling awful. The feeling of not being good enough can to horrible things to a person. Considering the rates of anxiety, depression, and suicidal ideation among autistic people, the last thing we want to do is tell them (outright or indirectly) that we don’t think they’re good enough.
What happens when you pour your time and hopes and dreams into the idea of something that probably will never happen? It won’t help you become less stressed. It won’t make life easier.
When we race for a cure, what are we losing? What happens to the autistic kids whose families are so desperate to change them? What do these kids learn? Do we even take time to see them, or are we so focused on turning them into a different person that we never get to know them as they are?
Let’s focus on support, not cures.
There is no ultra successful, prettier, happier, more socially acceptable, cooler non-autistic version of me. There’s just me. If I want to be happy, I need to accept that.
And in parents, it’s not autism “severity” that determines stress. Acceptance and empowerment are associated with reduced stress. Thus, if you’re a parent who wants to be happy, your best bet is to make peace with reality and start finding ways to actively improve your situation. (I’m a fan of wikiHow’s autism articles if you need ideas.)
Instead of hoping that autistics can be replaced by Stepford-esque non-autistic clones, perhaps we could focus our energy on helping the autistic people who already exist.
Here are some of my ideas for autism research and funding:
- What about quality-of-life services for autistic adults?
- Let’s research co-occurring conditions that make life harder for autistics. Epilepsy, Ehlers-Danlos syndrome, anxiety, depression, gastrointestinal issues, and more are all things that deserve researching.
- How do we reduce sensory issues? I want sounds to stop stabbing me please.
- We need more research on stress reduction for both autistics and caregivers.
- Assertiveness training could help build self-advocacy skills for adulthood.
- How can we adapt classrooms, workplaces, restaurants, and stores to be more autistic-friendly? How can we encourage people in charge to actually make these adaptations?
- Let’s get stronger supports for parents of newly-diagnosed kids. They could use help understanding autism and learning how to foster a healthy relationship with their kids.
- We could probably use more social programs to help autistic teens and adults find and maintain friendships.
Maybe, instead of trying to imagine a world without us, we could imagine one that supports and includes us.