You may have noticed a slight change to the title of the Blog.
*Points upward at banner*
I have been wandering through the myriad of facebook groups and websites dedicated to us… there are more than a few… and I discovered that today is Autistic Pride Day.
I never realised that it existed… I mean I’ve heard of Gay Pride, but not Autistic Pride.
So I decided that as our family is Autistic that I really ought to change the blog name – I’m not just bringing up an Asperger’s Child, I have an Autistic Family. Unfortunately I don’t know how to change the blog address, so that will have to stay as is…
One of the things that I came across in my wander through the web, was this wonderful post on Facebook by Nada Whincop. It made me sit back and rethink how I describe us.
About Functioning Labels and Autistic Identity
These days Asperger’s Syndrome and High Functioning Autism are considered to be the same thing by most professionals who work in the field of autism. This will soon be reflected in most medical diagnostic criteria too.
We #ActuallyAutistic people – we who are on the autism spectrum ourselves and often part of a peer led community, as opposed to neurotypical people who are involved in a professional or a familial way with autism – don’t really use any of the terms high functioning, or low functioning, or Asperger’s anymore because we feel that functioning labels aren’t fair.
People who are labelled as “with HFA” or “with Aspergers” by their parents or by social services can’t always get access to the supports they need because it’s assumed that they can function well enough in neurotypical society without any help. And people who are called “low functioning” by their parents or by social services get treated like children or are often institutionalised without any self determination because it’s assumed that they can’t think or decide for themselves.
Both these assumptions are very, very unfair to the people involved! And many of us also feel that if someone calls themself high functioning, or they say “I only have Asperger’s, not Autism,” then they’re trying to be somewhat snobbish and superior to those of us who they consider to be lower functioning than themselves.
In Autism communities – not in parent-run organisations, but in real #ActuallyAutistic groups – this snobbism is very aptly called Aspie Supremacy.
There is a new tendency in some AutisM communities (as opposed to AutisTIC communities) to cite Hans Asperger’s involvement in Nazi Eugenic cleansing as the reason to let go of the identity of Asperger’s. This feels a bit like being forced into an ABA type decision of the stick-or-carrot model. As if the community is saying “Well now, if you don’t let go of your Asperger’s identity, we won’t have a choice but to give you THE STICK of social shame, provided to us courtesy of that article on Hans Asperger in the newspapers… but if you take on our shiny new politically correct identity of Autism, then you’ll be allowed this lovely CARROT of social acceptability. It’s your choice of course dear, stick or carrot.”
Stick and carrot thinking often evokes anxiety fuelled demand avoidance in Autists.
The community cohesion model, where we let go of the identity of Asperger’s in solidarity with our fellow Autistics to whom the term Asperger’s or HFA feels like a snobbism, or deprives them of their self determination or some much needed support, that works much better for me than the stick and carrot model. We’re all Autistic, so it’s really divisive to segregate ourselves into subcategories.
Some parents and social services still use Asperger’s or HFA and also some of us Auties who haven’t really got the energy or the time to keep up with social issues that other Auties find so interesting. And that’s okay, because those of us are not purposely trying to be unhelpful by still using divisive language.
We also need to be kind to those who still call themselves Aspies or “person with HFA” because it’s hard for people to change the words with which they have described their identity for most of their lives.
They have the right as individuals to call themselves what they want. It’s not offensive to define ourselves – it’s only offensive if we devalue others in order to define ourselves, as in the case of race supremacists our intellectual supremacists or financial supremacists. And calling yourself by an identity which you love, is not doing that. So if you feel distressed at the idea of letting go of your identity words, don’t worry about calling yourself whatever you feel defines your identity. Naming your identity isn’t offensive.
The next Autism Spectrum diagnostic evolutionary stage is hopefully the use of ASC rather than ASD, because we don’t have a Disorder. We are of a specified human Condition, such as gay or brown or having 47 chromosomes or introverted or artistic or in our case autistic.
The difference between being artistic, brown or introverted and being autistic or having 47 chromosomes is of course that our condition is so different from most other people’s human condition, that we often can’t actually function properly in the neurotypical world.
Our cognitive identity is as vastly different from neurologically typical folks’ as Apple and Microsoft and Linux computer operating systems are from each other. It’s hard for the one system to operate in the other’s environment, just as it’s hard for Autistic folks to live in a world put together for neurotypical folks.
My belief is that, one day, our world would be so inclusive and geared towards equality that we wouldn’t have to provide a medical diagnosis anymore, before our specific neurotype’s preferences are accepted and met.
This shift towards inclusion and equality which gay people fight so hard for in our straight privileged society, a society in which financially privileged pink people still only begrudgingly include brown people, this shift needs to be made consciously, daily. Action by action, interaction by interaction. With this conscious shift towards inclusion and equality, our beautifully neurodiverse world could start to think of a 30-year-old Autistic as the lead psychiatrist at her own consultancy firm, brilliant at analysing medical data, if somewhat prone to chattering on about My Little Pony’s new film, instead of as a worry to her parents, unable to work and marry and raise children. As the best train mechanic at the depot, if not particularly good at working the crowded room or coffee machine at lunch time, instead of as a homeless lout with exorbitantly expensive headphones on who shouts when you walk past him too closely and has probably never bothered to work a day in his life. Or the dahlia grower at the flower show with the most amazing customer service smile, who gestures you over to someone else’s stall and gives you the two best choices in your hand when you ask her which bulbs would grow easiest in sandy soil with morning sun near the east coast, instead of as a burden on the state, mutely unable to communicate even her own needs and most likely with little understanding of her environment.
We are Autistic People; we are an Autistic Family; we are a part of the Autistic Community… and that will never change.
As a final discovery on my Interweb Trawl, I offer you this thought from Fantasy Author, Brian Rathbone as a reminder that while NT’s may find our ways strange, it is up to us to own our personalities, traits and obsessions and celebrate them:
Sometimes you must be the weird you want to see in the world.
— Fantasy Author (@BrianRathbone) June 18, 2018
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How to bring up a Neuro-Divergent Family without going crazy... 