Few things cause more feverish reactions in the autism community than talk of a cure. While the majority of autistic people hate the C word, some cling to the idea of a cure as if it’s their only hope. Meanwhile, parents of autistic children are often the most vocal about finding a cure for autism. They see what they perceive as their children suffering and want that suffering to end.
Still, even more people with no direct link to autism also want to cure autism—sometimes out of fear, often out of ignorance.Â
Those who advocate for a cure, or who fail to understand why many autistic people fight the idea of a cure so passionately, often cite the same reasons to argue their point. I’ve collected some of the most common points I’ve heard.Â
Not Every One Is Affected by Autism EquallyÂ
A lot of the people who want a cure say that it’s for people whom they consider “low-functioning.” They believe the “high-functioning” autistics are selfish for putting their desires over the needs of their low-functioning counterparts. They see it as a disability, not a gift.Â
First of all, functioning labels are bullshit. Even the people who see autism as a gift are greatly affected people. Just because an autistic person likes being autistic doesn’t mean they don’t experience challenges. There are things I love about being autism and about the autistic community. It gives me a sense of belonging I don’t often feel. For most of us, being autistic comes with a mix of challenges and rewards, and this is true no matter how you’re labeled.
I call my autism a gift because I’m proud of who I am, not because my autism doesn’t affect me in undesirable ways. For many of us, our lives would be tremendously easier if we weren’t neurodivergent. Maybe we wouldn’t be constantly infantilized or judged for traits we have no control over. Maybe people wouldn’t try to change us. Maybe we’d feel welcomed by society instead of ostracized.Â
Some autistic people are so hurt by the way society has always treated us, that they want a cure. They believe a miracle cure is easier to imagine than a world in which society actually treats us with respect. They don’t believe people can change so they want to change an integral part of who they are because they want to feel loved, they want a job that doesn’t make them cry themselves to sleep every night, they want friends, they want to feel like they have value.
They don’t want to be bullied, taken advantage of, mistreated, abused, silenced, called out every time there’s a mass shooting. This is what society does to us. They systemically try to strip away our sense of worth. Autism is not the problem. Hate, ignorance, and stubborn resistance to reflection, education, and self-improvement are the problems.Â
Some of us don’t like being autistic. I would never devalue the struggles many people in the autism community face every day. It can be hard and painful. At times, it can feel impossible. But a lot of these challenges would be minimized if society stopped making us feel like we are less-than. I’m not less than anyone or anything. I’m fucking amazing. Every single person I know on the spectrum is fucking amazing. We have worth. We matter.Â
As much as feel for the people who want their autism to go away, there is no way to pick and choose who is affected by a “cure” in the highly unlikely possibility that such a thing ever exists. It’s one thing for an adult autistic to choose to treat or cure their autism. But the reality is it would end up being parents who decide whether to cure their children. People will have an intrinsic part of their identity taken away from them without their consent. This raises all kinds of ethical concerns.
The issue of consent is complicated. There is an inherent power imbalance in the parent-child relationship that is often intensified when autism is involved. Autistic children are often more dependent on their parents than non-autistic children, which often makes it hard for them to stand up for themselves. The extent to which a parent builds up their child or tears them down also comes into play. Even the most loving parents fall into patterns that infantilize or cause them to doubt themselves. Some parents are outright manipulative, even if they don’t mean to be.Â
In addition, it further pushes the notion that autism is a problem that needs to be fixed. We, as a community, are already treated like problem children. We don’t need people to have any more reasons to treat us like shit. The idea of a cure affects every single person in the autism community. This has to be acknowledged.Â
Wanting A Cure Isn’t Ableist
Advocates of a cure hate that many autistics call them ableists and eugenicists. In their mind, there is nothing wrong with wanting a cure. They’re coming from a place of compassion. A cure would prevent many people from a lifetime of suffering.
Ableism is discrimination in favor of able-bodied or cognitively-typical persons. Autism is not a disease. It is a developmental and neurological difference. Saying one neurotype has more value or is preferable to another is inherently ableist.Â
Autism is genetic. The only sure-fire way to eliminate a genetic variation as complex as autism would be through sterilization, eugenics, and other extreme measures. You would need to wipe out autism as a whole. This is not just ableist, it’s genocidal. Sure, you can talk in theory about a cure that doesn’t equate to eugenics, but the science doesn’t exist. It will likely never exist.Â
32% of Autism Speaks’ budget goes to research
42% goes to raising awareness and lobbying
16% goes to fundraising
That’s 90% of donations that do not go toward services that actually help autistic people. Some years, only 1% of the Autism Speaks budget is allocated to helping autistic people. This is a huge problem. The idea of a cure actively hurts the whole community. We’re wasting huge sums of money researching cures and treatments that will do more harm than good, cures that may not ever even be possible—and this comes at the expense of the services and accommodations we actually need.
We need help with employment. We need help with housing. We need help coping with abuse, depression, trauma, and other conditions caused by a world that doesn’t embrace differences. We don’t need a cure that will only further push a narrative that devalues and dehumanizes us.Â
The Research Focuses on Learning about the Causes of Autism, Not on Finding a Way to Cure ItÂ
Cure rhetoric is still very much alive. I see it all the time. Even if the research does focus on causes, when people hear others talk about wanting a cure for autism, they see us as diseased when we’re not.Â
A lot of the research that Autism Speaks performs focuses on early intervention– regimented interventions that are designed to rigidly “train” the autism out of children for as many as 40 hours per week. Autism Speaks is fully aware that their programs and marketing campaigns divert funds from organizations that actually focus on providing autistic adults with services. Many of these organizations are severely underfunded.Â
Autism Speaks has the power to do something about it. They don’t. Why? Because they don’t give a damn about helping autistic adults. They care about money. They care about erasing autism. They care about their image. They care about all of these things more than they care about the autistic community. They put on a facade of compassion and morality, and it is absolutely disgusting.Â
A substantial amount of effort also goes towards raising awareness. Recent autism awareness campaigns are impressive. When my parents first suspected I was autistic, no one was talking about autism much at all. It took a decade for me to attain a proper diagnosis because there were still a lot of misunderstandings about what autism actually was. We’ve come a long way over the past 25 years.Â
Yet, autism awareness is most powerful when it highlights the experiences of autistic people from the perspective of autistic people. Organizations like Autism Speak don’t do that. It’s publications like The Aspergian that shed light on what autism is really like.Â
To those reading who are in favor of a cure, this isn’t about me v/s you. This isn’t some morbid competition. I don’t believe your voice is less valid than my own. I don’t believe my pain and struggles carry more weight than yours do. We’re in this together, whether we like it or not. We have one undeniable commonality that binds us. Yet, I care deeply about the autistic community in its entirety. And right now, this community will benefit far more from increased support and services than it would from the chase for a cure or raising awareness for that matter.Â
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3 Responses
Autism Speaks article makes it sound like the Black Death is speaking
“And right now, this community will benefit far more from increased support and services than it would from the chase for a cure or raising awareness for that matter.” AGREED.