Autistica – Autism Research Survey

Big thanks to Dirty, Naked and Happy for letting me know about this survey!

So the National Institute of Health Research are conducting a survey to identify what a/Autistic people, their families, carers and medical professionals want to see researched in the future. You can fill in the form if you’re formally diagnosed, self diagnosed, a spouse or family member of an Autistic person. You can fill in the form multiple times if more than one of these statuses applies to you.

I think this is great. It’s exactly what we’re fighting for out there on social media, and for some of us in our everyday lives. We’re getting our voices heard, and influencing the direction that research takes so that it will be of use to us (are you listening Autism Speaks? this is how it’s done right).

You get 3 questions per form submission, and once the survey closes, they’ll pick a top 10 to investigate. My choices were:

How much of what is currently regarded as autism is actually autism and how much is co-morbid conditions that can be treated separately?

Now I know that the DSM specifies autism only as those key points affecting interests and interaction, however, the Autism community (particularly cure-seeking parents) often confuse co-morbid conditions such as gut problems, intellectual disabilities, epilepsy etc with autism itself. It’d be nice to see co-morbid conditions treated separately from autism, with a focus on improving quality of life for a/Autistic people, rather than a focus on making them not-autistic. I believe that a study (or statement) from a reputable health body could improve this attitude.

There’s a lot of focus on autistic children, but more adults are being diagnosed. With a focus on self-help type therapies, and an avoidance of social normalisation (e.g encouraging eye contact, discouraging stimming), what techniques would an autistic adult benefit from employing?

Another one for focusing attention away from “curing” us, and towards helping us manage our Autism in ways that suit us. I’m hoping to see better advice for the use of calming techniques, perhaps even bio/neurofeedback suggestions for problems with interoception. Refocusing on adults should head off all the early intervention and normalisation talk that usually pops up in place of self-help advice. I want things that’ll make us feel better rather than look better.

What are the benefits of “non-functional behaviours” or “stimming” for autistic individuals, how important is stimming as a coping/soothing strategy?

I want to clear stimming’s name. It’s not a dirty word. In most cases it’s a harmless behaviour, and we all know for a fact that it helps us self-regulate. However, as with the recent scientific revelation that we do in fact feel sensations more keenly than neurotypical folks, we need a scientist to “discover” it officially before we’re likely to be listened to on the matter.

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