As Project Manager of the Spectrum Project, I was invited to share my experience of gaps in provision for autistic people. This is the letter that I wrote.
My name is Shantelle Svarc and I am a founding Partner of Darkside Training LLP, founding Director of Darkside Rising CIC and the Project Manager for the Spectrum Project, supported by an investment from the Autism Support Network Fund. I was diagnosed with autism in January 2019, at the age of 31.
I take a neurodivergent approach to autism, encompassing the LEx (lived experience leadership) movement, which I appreciate is somewhat at odds with the current medical model of autism, or so it appears from experience anyway.
During the diagnostic session, the consultant made it apologetically clear that there was absolutely no further support available after diagnosis, for adults at least. So I guess the first gap in provision for autistic adults is the fact that there is no provision at all.
There is a wider context here though, of provision but also of definition. I was diagnosed with Autism Spectrum Disorder, but what exactly is my disorder? The fact that I do not have the same social requirements or communication style as neurotypical people does not make me disordered. In fact, there is copious archaeological evidence to suggest that neurodivergent traits such as autism were instrumental in the development of modern human behaviour, such as social justice and community partnership. Something we are now starting to define as social ecology.
While I fully appreciate that some autistic people may indeed feel that they have a disability or a disorder, the presumption that we are ALL disabled because of our ‘disorder’ is erroneous, and incredibly damaging. This burden of being somehow inherently ‘wrong’ is creating the unforgivable mental health crisis that autistic people face – women with autism are 13 times more likely to die by suicide than their non-autistic counterparts and children with autism are 28 times more likely to think about or attempt suicide.
There is a huge ethical consideration here, if the psychological constructs inherent in diagnosis are actually causing harm. The eugenics that psychology was so fond of, not all that long ago, are still deeply embedded in modern research and literature and perhaps it is time to acknowledge this and begin to dismantle it.
My suggestion to you, as commissioners, is for the encouragement of the neurodivergent model of autism and benefits of social ecology, consideration of the ethical implications of constructs that psychologists have created, and then an application of that learning to change not the autistic person, but society itself. That, I think, would be an admirable way of improving autistic mental health and be a great stride towards transforming the current culture of ignorance and neurotypical superiority.
I would be happy to offer a talk or presentation if you would like to discuss this further.