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So Autism Speaks Isn’t Talking About a Cure Anymore

5416814610_b652e6b44bI’m sure we all know Autism Speaks. It’s by far the largest autism organization in the world. And to a lot of people, the most villainous. That’s definitely going to change now for a lot of people since their page no longer says the word “cure.”

They are still looking for one though. Check out this ten-year mission statement:

  • A better understanding of the causes and typology of ASD (see: Autism Genome Project.)
  • Children with an autism spectrum disorder being diagnosed before the age of 2 (great!)
  • Children having access to appropriate intervention, services and resources immediately following diagnosis
  • The availability of better treatments both for underlying pathology as well as co-existing conditions that decrease quality of life for those with autism
  • People with ASD and their families have transition plans that result in more independent adult life that is meaningful to the individual
  • Individuals with ASD will have effective interventions, services and supports throughout their lifetime

They’re still funding genomic research for the National Institutes of Health as well as Beijing Genomics Institute. China is doing a CRISPR study to create and then knock out an autism gene in monkeys.

Now you all know how I feel about a cure. I know some people truly feel that the good outweighs the bad for them. But it’s not a positive experience for most of us. Neurodiversity activists argue that early diagnosis and fair accommodations would take care of the majority of the problems we have to deal with.

But I don’t think that’s true. Accommodations wouldn’t stop meltdowns. They wouldn’t protect us from predators. They wouldn’t change the fact that many autistics have such sensory and emotional agony over pretty much everything that all they do is scream. That’s not a life, for the kid or the parents. So many autistic people couldn’t even hold a yes/no conversation with you, let alone live by themselves or get married.

Accommodations also wouldn’t change the fact that most people don’t want to have to explain everything to us. They don’t want to feel like they’re taking care of an adult baby. They don’t have the patience for our bluntness and our terrible time management and our laziness and our nasty little controlling tendencies. Human nature is what it is. We can’t politically correct it away.

You could argue that autistic people tend to move things forward in science. Those of us on the high-functioning end do tend to be smart. The evidence of evolutionary productivity is there in our family members. And sometimes ourselves. You could also argue that treatments may one day become advanced enough that we wouldn’t need to alter our genetics.

The biggest problem people have with curing autism is that it’s clearly eugenics. We don’t know what’s going to happen if we chop up the human genome. It would be great if we could pinpoint and select:delete genes that caused specific things, like stereotyped repetitive behaviors and sensory problems. Plenty of researchers are trying to do that with FragileX and epilepsy. But autism has so many genes that go into it. It’s not even necessarily genetically consistent in families.

Then you’d have the arguments over whether we should abort autistic fetuses or force a cure in utero. Also (eugenics here, remember!) the government potentially forcing us to be cured because they don’t want to pay for services. That one’s 100% valid. No adult should ever have a cure forced on them if they don’t want it. Kids are more complicated. That’s why CRISPR ethics state that so far it’s unethical to edit the human germline.

I understand why Autism Speaks isn’t shouting ‘cure’ anymore. We do need to take care of autistic people who are already here. And we are people, not robots or inspiration porn or the remnants of the child that the bogeyman left you. I’m glad Autism Speaks has taken a more nuanced view of things. But I think both neurodiversity advocates and pro-cure people like me would appreciate it if they were still upfront.

 

So Autism Speaks Isn’t Talking About a Cure Anymore


Gwendolyn Kansen

Gwen Kansen is a mental health writer in New York. She likes food, karaoke, and smart-but-campy books & TV. She's hoping to capture a little sliver of life on here that might not be the first thing you'd see.


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APA Reference
Kansen, G. (2016). So Autism Speaks Isn’t Talking About a Cure Anymore. Psych Central. Retrieved on February 23, 2020, from https://blogs.psychcentral.com/not-robot/2016/10/so-autism-speaks-isnt-talking-about-a-cure-anymore-this-sucks/

 

Last updated: 25 Oct 2016
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