Thread by @thinkingautism

Let's be clear: Well-connected autism parent lobbying via media & research outlets for a "profound" autism label is not the same thing as making that label official. Also, creating that label would lead to segregation—not progress. Here's why, at TPGA:

thinkingautismguide.com/2021/12/creati… 1/

It’s not surprising that certain parents of high-support autistic people are seeking to segregate their own children via the label “profound autism.” Parents often aren’t given good info on how to support children who have speech or intellectual disabilities along with autism. 2/

Parents may also feel isolated when autistic kids get lumped together, as when your kids' disabilities are obvious, it can be hard to recognize how they share autistic traits like a need for consistency or sensory sensitivities with kids whose support needs are less obvious. 3/

Parents may then get frustrated by the general autism community because it includes/is led by people we perceive as having lower support needs than our own kids: thinkingautismguide.com/2018/05/autist….

We might falsely believe that inclusive autism spaces can’t possibly serve our families. 4/

We parents of high support autistics might believe that a label like “profound autism” will help our children, and our families. But this approach is terribly, horribly misguided, and you need to understand why. #Neurodiversity

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When parents believe “profound” autism is a separate condition from “high functioning autism,” our own kids' illnesses—or common co-occurring conditions like migraines or Tourettes or anxiety—can get overlooked, unaddressed or written off as “behavior” or "just severe autism.” 6/

And because of the relentless negativity, fearmongering, and pseudoscience of most mainstream autism media coverage, “profound” autism communities draw in parents who want to cure or treat autism, rather than understanding how to support their autistic kids. 7/ #AutismAcceptance

And then when “nothing worked” because all of those parents’ kids are “still autistic,” & everyone is angry & feeling hopeless, the parents are left claiming “no one” is addressing their “profoundly autistic” children’s support needs—so they need to create a separate category. 8/

But if the parents of “profound” autistic kids would connect with all the communities that include their kids, like the disability and communication communities in addition to inclusive autism communities, they’d be so much better off. 9/

The non-autism disability communities, specifically, tend to be more oriented towards problem-solving for their kids’ rights and accommodations and medical needs. They get equally angry about the lack of support resources because there IS a lack of support resources. 10/

But unlike some "autism parents," other communities of parents of disabled people tend to view adults who share their children’s disabilities, and the value of their shared, lived experiences as the valuable resources they are—instead of rejecting crucial allies and supports. 11/

Why is it so hard for parents of autistic children to understand which resources will actually help them and their families?

One roadblock is a society that tends to view autism and disability as scary bad things, and see disabled people like our children as burdens. 12/

In addition, most mainstream autism resources were developed by professionals who haven’t gotten over the idea that disability is bad, or who aren’t part of the autistic or disability community, and who didn’t consult autistic people... 13/

—so most mainstream autism resources tend to center on how to make autistic people easier for non-autistic people to live with, instead of focusing on autistic people’s happiness and well-being. 14/

And since a family is usually only as happy as its least happy member, and since most families are not given information about helping autistic people be happy, this means too many families with autistic members are not happy ones. 15/

Parents who aren’t themselves autistic or disabled and who rely on these mainstream autism resources may therefore have no guidance for viewing their children positively. They may not see their kids as who they are, but rather as what they aren’t. 16/ #Neurodiversity #autism

Parents who get bad autism info &/or aren't autistic won’t have lived context to teach their kids self-acceptance/self-advocacy—which means their kids may not learn that they deserve & have the rights to the accommodations they need.

Again, these will not be happy families. 17/

But if parents get information about parenting autistic kids from the autistic community, they will find people who think autistic kids are awesome & deserve to be happy—and want parents to feel the same way.

Example: @autselfadvocacy's parent guide: autisticadvocacy.org/book/start-her… 18/

When parents will learn about autism from people who had autistic childhoods, they can find out that the way their autistic child socializes is perfectly normal—for an autistic person—and that many social communication difficulties go both ways (see: reframingautism.org.au/miltons-double…). 19/

When parents learn about autism from autistics, they find out their child’s strong interests can bring them deep joy, their repetitive movements can bring them peace, and their insistence on sameness can help them cope with an unpredictable world.

thinkingautismguide.com/2022/04/unders… 20/

When parents learn about autism from autistics, they find out that things that non-autistic people consider “no big deal” are actually a very big deal for autistic people, like noises & flickering lights & consistency & processing delays & surprises.

thinkingautismguide.com/2022/01/autism… 21/

When parents learn about autism from autistics, they learn to respect and work with the autistic child’s communication style, especially if the child uses echolalia, scripting, or alternative communication methods like typing or iPad apps.

thinkingautismguide.com/2021/10/jordyn… 22/

When parents learn about autism from autistics, they will find out that autistic people consider ABA therapy a form of torture, and that at the same time some types of speech therapy and occupational therapy can be crucial.

autisticscienceperson.com/why-aba-therap…

thinkingautismguide.com/2022/08/autist…

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If parents rely purely on the “profound” autism community, they are unlikely to find the resources their children need. In contrast, when parents find actually useful resources, they and their children can be much happier. This doesn’t guarantee that everything will be fixed! 24/

…but that is because our society does not yet provide the benefits and resources to support autistic children and families properly, & also because parenting is hard, and all children—disabled or not—can require more supports than their parents ever imagined. #neurodiversity 25/

Finishing with a reminder that every autistic person qualifies as disabled, & needs some kind of support & accommodations—& this is true even if a person is able to talk, go to a mainstream school, or work in a regular job. "Profound" autism advocates belittle this reality. 26/26