(Published in 2018) There’s some disparity in the autism ranks…. It has been observed that two distinct divisions could be making their mark amongst people involved in the autism community – as follows:
Them And Us
A recent discussion in a private autism social media group really got this blogger thinking. A person on the site who was given the older diagnosis of Asperger Syndrome mused that if they were considered to be autistic when they ‘only’ had an Asperger’s diagnosis, was [their Asperger’s diagnosis] insulting to ‘autistic people’? (Obviously, Asperger’s is an outdated term now).
Their main view-point presumably being that Asperger’s is not really ‘proper’ autism, and the implication being that there is a ‘them and us’, in terms of differing support needs, concerning autism.
(1)Yes, ‘high functioning’ and ‘low functioning’ labels are no-longer used, advocated or diagnosed. But, they are still unfortunately used conversationally. And people given a diagnoses are often ‘used’ to their ‘label’, even if it isn’t one that’s politically correct, or up-to-date.
(2)WOW – this individual’s viewpoint (of low support-need profiles not really being ‘proper’ autism) is concerning!
This way of thinking perpetuates what (in the author’s opinion) can be described as a widely-held myth that there is ‘mild’ autism, which means the autistic person supposedly does not struggle so much as someone with more support needs.
Obviously, many documents, features and clinical documents have for years used functioning labels when discussing autism, but people now realise that it isn’t helpful.
Surely, autism is autism, and the differences seen by the people surrounding the autistic person are simply differences being observed by the outside world? Our autism is our autism, and our support needs dictate our ability to thrive.
Let’s explore this further… maybe comparing someone who used to be given a label of being a low functioning autistic, to someone who’s so called high functioning, is futile? And insulting? In reality, surely we cannot make a judgment about an autist, based on whether they are mute or verbal (for example)? What about the so-called high functioning autist who’s very adept at ‘masking’ their autism daily, and is perceived by peers as sailing through life, but who goes home, closes the door and retreats to bed, over-whelmed, over-stimulated and exhausted? Who are outsiders to say whether this person has high or low functioning? By whose terms are we measuring their functionality?!
The so called high functioning autist may be experiencing many challenges in life, and the challenges are of course likely to be different to the so called low functioning autist’s experiences – but believing that someone is ‘a little bit autistic’ and therefore needs less support than a ‘more autistic’ person is surely skewed thinking?
Therefore, we would urge people like the individual in the aforementioned social media group to reconsider their views on autism; separating autism like this and deeming some people to be (for example) ‘mild’ does nothing to further autism acceptance.
As of 2018 in the UK, there is a wider autism classification; hence, the profile of Asperger Syndrome (or Asperger’s disorder from DSM-IV) is no longer used, and Asperger’s isn’t specifically acknowledged in the new diagnostic criterias.
Read more HERE:
Now, onto the second element of perceived division within the autism community:
‘#actuallyautistic versus Autism Awareness’
There seems to be some division between (1) the #actuallyautistic individuals who are autistic themselves and desire more acceptance and understanding, and (2) the ‘autism warriors’ and autism awareness campaigners that are seemingly more likely to be neurotypical (NT) parents of autistic offspring. (You know; the ones who dress their children in a T-shirt saying ‘This is what autism looks like.’)
Writer Amy Sequenzia writes eloquently about this in her blog ‘Autism Awareness Month Awareness’ where she states (ahead of April’s ‘Autism Awareness Month): “I am declaring March ‘The Month to Beware of Autism Awareness Month.’ Because Autism Awareness Month is the month when Autistics who need more support than society deems ‘reasonable’, Autistics like me, are singled out as the ‘biggest epidemic ever’, and as the reason for more money thrown into research that don’t seek to improve our lives, but to find ways to make sure people like me are prevented, are never born.’
Essentially and to generalise, the #actuallyautistic community tends to want to raise acceptance of autism as a representation of neurodiversity that isn’t broken and doesn’t need mending, curing and fixing. Meanwhile, the (perhaps more NT-led?) Autism Awareness advocates are seemingly pushing for awareness activities and funding that some commentators propose could potentially lead to screening for autism. As Amy puts it, “…to find ways to make sure people like me are prevented, are never born.”
This is an understandable division – and Spectra.Blog sits firmly in the first, #actuallyautistic ‘camp’, in case you are wondering! – and the division is such a shame.
With so much changing within neurobiology research isn’t it time for solidarity? Acceptance? Education? The difference of opinions, while understandable, surely aren’t helping the overall cause of understanding autism, and moving forward with acceptance….
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism; the information we post here is based purely on our own exposure and experiences.
Also published on Medium.