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:
1)‘Them And Us: Autists Versus Aspies’
A recent discussion in a private autism social media group really got this blogger thinking – a person who has a diagnosis of Asperger Syndrome mused that if they were labelled as having autism when they ‘only’ had an Asperger’s diagnosis, was [their autistic diagnosis] insulting to people ‘with autism’?
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 low and high functioning autism.
WOW – this viewpoint 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 diagnosed person supposedly does not struggle so much as someone with ‘severe’ autism.
Obviously many documents, features and clinical documents have for years used ‘severe’ and ‘mild’ terms when discussing autism, but many people feel now that it isn’t helpful.
This autism blogger really believes that autism is autism, and the differences seen by the people surrounding the autistic person are simply differences being observed by the outside world – they are not necessarily differences from the autistic person’s point of view.
Who defines high and low functioning autism?
Let’s explore this further… maybe comparing someone who’s a so-called low functioning autistic (e.g someone who is non-or preverbal, and somehow perceived as ‘very autistic’, or more afflicted and even less able), to someone with so called high functioning autism, is futile? And insulting? In reality, surely we cannot make a judgment about an autist, based on whether they are verbal or not? Or whether they hold down a job or not? 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 and being ‘only mildly autistic’; 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 is 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, where: ‘Them And Us: Autists Versus Aspies’ is concerned, we would urge people like the individual in the aforementioned social media group to reconsider their views on autism; separating the different autism profiles like this and deeming Asperger’s-type Autism Spectrum Conditions (ASCs) to be ‘mild’ does nothing to further autism acceptance.
NB – it’s important to note that incidences of ‘Asperger Syndrome’ as a written diagnosis by a clinician are decreasing, and Asperger’s isn’t specifically acknowledged in the new DSM-5 ASD criteria. (DSM-5 is the Diagnostic and Statistical Manual, fifth edition (see: DSM-5).
‘The disorder spectrum concept (autistic spectrum disorder, or ASD) has now been fully integrated into autism classification, the condition of AS (or Asperger’s disorder from DSM-IV) is no longer used.’
Here’s a fascinating article detailing some elements of this new development in the field of autism diagnosis, called “From Asperger’s Autistischen Psychopathen to DSM-5; Autism Spectrum Disorder and Beyond: A Subthreshold Autism Spectrum Model” – click the title to read it.
Now, onto the second element of perceived division within the autism community:
2) ‘#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 of ASCs, 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 neurodiversity that isn’t broken and doesn’t need mending, curing and fixing. Meanwhile, the (perhaps more NT-led?) Autism Awareness advocates are 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 autism research (e.g. advances in the research linking ASDs / ASCs to both schizophrenia and bipolar disorder; and also research into the question of whether the autistic brain’s individualities are linked to ‘predictive coding’ – e.g. a poor ability to predict patterns, probability and chance, so the autistic brain experiences ‘mild surprise’ at everything) – isn’t it time for solidarity? Acceptance? Education? The difference of opinions, while understandable, surely aren’t helping the overall cause of understanding autism spectrum conditions and moving forward with acceptance….
A little disclaimer – here at Spectra.blog we don’t claim to be experts about Autism Spectrum Disorders; the information we post here is based purely on our own exposure and experiences.
Also published on Medium.