Preparing for the Future

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CW: ABA, Pseudoscience

I want to address the autistic community today. Not allies.. Not the parent community. Just the autistic people who believe in autism acceptance.. neurodiversity principles… the social model of disability. I’ve been writing this blog for 8 and a half years. Meaning, it’s been almost 9 years since I was diagnosed “with Asperger’s Syndrome.” It’s been 10 years since my oldest child was diagnosed “with autism.” In 5 years, he will be an adult.

Do you know what I was first introduced to when he was diagnosed? Not just any ABA, but the ABA that you now see people argue is “not like Lovaas ABA.” You see, 2 years before he was diagnosed, Pivotal Response Treatment (PRT) was identified as one of 4 scientifically proven treatments for autism. It was highly recommended especially if you did any searching and found DIR/floortime or Sonrise or RDI. “This is natural just like those!”

You know what else I was recommended? Of course, the GFCF diets. But in the coming years, I heard about chelation, “natural chelation” with cilantro?, supplements like fish oil and probiotics. Then on to soy free, sugar free, all natural, no vaccines, etc etc etc.

Why am I bringing this up? My oldest son just turned 13. That means 5 years from now, he’s going to be 18, an adult. That means all these ‘treatments’ that I’ve heard of by “autism moms” across the US, they’ve been practiced on children for 10+ years.

You know what else? In 2012, when my son was 8 (ie, were counted in the CDC prevalence studies) the prevalence says 1 in 68 children are autistic. Now, I firmly believe that we will see an equalization at 1 in 38 give or take. (Also see the data in Feb 2017 Nature paper. You may have to dig.) Sorry for that small tangent.

Anyways, my point. This 1 in 68 is going to be an adult in 5 years. This means a whole lot more autistic people have been identified AND ‘treated’ than ever before. And they’re about to be adults.

Unlike a lot of blogs, this is not about the desperate need for adult services (yes, we need that). This isn’t about the “epidemic.” No.. This is about what we as an autistic community are about to face. A generation of autistic people that have been told that autism is bad. A generation of autistic people that have been taught how to not be autistic. A generation of autistic people who have been forced medical interventions, diets, and pseudoscientific treatments.

This generation, more so than in previous generations, have been taught not only with physical aversives how to be “normal,” but by psychological conditioning. How their peers are judging them and how to change so their peers don’t judge them (as oppose to recognizing autistic traits as part of a natural human experience).

We’re also going to meet a whole new generation of nonverbal autistic people that have been communicating with a device for a large part of their lifetime. That their parents have shamed them on the internet. That have been given even harsher treatments trying to cure their autism. Whether it’s stem cell treatments in Mexico, MMS enemas or chemical chelation to remove toxins. Their parents have been trying for years to cure them. And soon they will be adults and will be moved into group homes where they will finally be able to find their community.

We’re about to see the harsh truth of the age of Autism Speaks. This generation has grown up with their messaging. Their research. Their autism bills that only cover ABA and no developmental therapies.

Are we ready? Are we ready for the stories? Are we ready for the apologists? Are we ready for our own autistic community to have challenges to “not my ABA”? Are we ready to help them pick up the pieces when they burn out?

I don’t think we are. I don’t think we’re nearly ready.

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