Researching autism

Are we witnessing insurrection against the final taboo? Or are we becoming fallout from the friendly fire of duplicity?

This month, September 2021, two major research initiatives into autism have hit the news. Hailed as breakthroughs in the bid to further knowledge and understanding of autism they have been less well-received in some quarters. Namely, within the autistic community. I offer my take on what’s been emerging.

Spectrum 10K Study

Pros: massive study involving autistic persons inputting their own data and giving their own opinions; involvement voluntary

Cons: same input requested from parents, and any other interested party; DNA samples requested, in form of saliva sample, to identify markers for autism

Thoughts: only the lived experience of autistic persons is relevant; the opinion of others is subjective and may recount negative experiences that can skew the data; searching for condition markers is never altruistic with control and manipulation becoming an objective for some

Notes & quotes: study put on hold and request for DNA samples suspended
NAS (13.09.21) “For many years, autism was mis-characterised as a disease or illness, and something to be cured. It is not. Despite much better understanding … this attitude has not disappeared entirely … still have a long way to go”

Autism therapy for infants

Pros: therapy involves parents/carers; language of study: results indicate improvements in social interaction, repetitive movements, extreme reaction to sensory input

Cons: parent observed interacting with child; therapist advises (‘coaches’) parent on how best to interact with their child; success measured on reduction of autism diagnosis; language used by media is “children scored better”; researchers said therapy “not a cure” and that many children still had “significant developmental problems”

Thoughts: laying communication shortfall on parent is in part reminiscent of Leo Kanner’s discredited ‘refrigerator mother’ theory of 1940s; autism is a condition not a disorder; reducing diagnosis equates to stigmatising the condition; findings as translated for public consumption are stigmatising, misleading, and marginalise the autistic community; the areas identifies as showing improvements are those necessary for a diagnosis of autism, so any other significant developmental problems would not be part of diagnosis

Notes & quotes: Tim Nicholls (head of policy NAS) “It’s important that any further study into very early intervention does not seek to lessen ‘severity’” and “autistic people must be involved at every stage.”

No matter how well-intentioned researchers may be or purport to be, when the message they give can be so easily misinterpreted by the media and negatively affect public perception – for autistic persons it will be ultimately damaging.

Note: The NAS is the National Autistic Society is the leading UK charity and offers support and guidance for persons on the spectrum, their families and carers.

If you are autistic – I welcome your awesomeness.
If you care for an autistic person – observe, listen, and learn.
Challenge the commonplace; embrace the extraordinarily.

Go in peace and be unique: styler, maker, server, geek.
Maz, X