Monday, 11 February 2013

A Guideline For Our Would-Be Non-Autistic Allies

Neurotypicals who mean well and want to be allies of autistic people, often understand us even less well than we do them. So I’ve compiled a rough guideline for them to follow. Feel free to share it with whoever you think needs it.

Firstly, let go of ALL assumptions you have about us.
These include, but are not limited to, the following –

1) That our behaviour is prompted by the same forces that would prompt similar behaviour in a non-autistic person. So if we appear rude, arrogant, cheeky, insensitive, selfish, etc; it’s because we know the social rules and are deliberately flouting them. And if we’re not looking you in the eye, it’s because we’re dishonest.

2) That if we display a ‘wrong’ emotion, or none at all, it’s because we’re being deliberately rude, etc, as above. Or because we don’t have any feelings. Or that if we don’t answer when you ask what we’re feeling, it’s because we’re snubbing you.

3) That if we complain about noise, smells, bright lights, etc, or ask for special foods eg gluten-free, that we’re doing it to spoil other people’s fun, make life difficult for others, because we like to moan and bitch, or are just attention-seekers. And if we don’t get accommodated, and we cry, withdraw, or meltdown, it’s for the same reason/s.

4) That there is nothing good or worthwhile about being autistic. So if our thinking, behaviour, emotions, reactions, interests, whatever, differ to yours, that they are automatically inferior/ wrong/ pathological/ to be corrected/ eliminated.

5) That we are incapable of empathy, sympathy, compassion, altruism, helping others, or seeing their point of view. So if we do seem to be acting that way, it’s an error, a rare exception, or simply a misinterpretation. Or that individual is ‘not really’ autistic at all.

6) That if we have communication difficulties, or are even non-verbal, that this means we are less intelligent/ intellectually handicapped, and should be spoken to in that slow, deliberate, patronising way people use for ‘those poor souls’.

7) That even if we are obviously intelligent, we will never have meaningful lives - get an education (except perhaps in IT), hold down decent jobs, have adult relationships, marry or raise children. Or that if we do do these things, we’ll invariably make a botch of them, be bad parents, etc. Or if we are successful at them, then we’re ‘not really’ autistic at all.

8) That we ‘don’t want’ to connect with others, or make friends, and/or that we are incapable of forming communities of our own. That nothing about non-autistics could cause us to withdraw from you.

9) That our current state is all we’re capable of, no matter what our age – that we’ll never grow, develop, or evolve as individuals, the way ‘normal’ people do.

10) (And possibly most important) That you know what our agenda and needs are without asking us, and don’t need to consult us first before acting on our behalf.

Especially discard any assumptions that are the result of
i) You once met one autistic person who is/was ‘like that’.
ii) You or your best friend’s uncle’s cousin’s brother-in-law live, or once lived, next door/down the street from an autistic person.
iii) Some ‘expert’ said so – you read it somewhere, or saw it on TV.
iv) The smoko/water-cooler/morning tea ‘experts’ at work said so.
v) Your neighbour/best friend/auntie/teammate said so.
vi) ‘Everybody’ knows that.

Secondly, stop patting yourself on the back for having anything to do with us.
We are your fellow human beings, albeit different, why should you be congratulated for interacting with other humans? This attitude infers that we are a ‘lesser order of creature’, who should be pathetically grateful for whatever crumbs of ‘charity’ you throw our way. And that if such gratitude is not forthcoming, you’re perfectly entitled to flounce off in a huff. If you’re going to be of any real help to us as allies, you need to get past your ego.

Thirdly, inform yourself about us.
1) Read professionals such as Tony Attwood, Lorna Wing and Teresa Bolick to give you a general understanding about autism and Aspergers.
2) Read up on the criteria for formal diagnosis of all forms of autism.
3) Research Sensory Processing Disorder, Alexithymia, Dyspraxia, Dyslexia, ADD/ADHD, prosopagnosia and other such ‘Co-Occurring Conditions’, as these complicate our lives considerably.

Fourthly, (and above all) listen to us.
1) Read anything by adult autistics like Lianne Holliday Willey, Jerry Newport, Michael John Carley, Stephen Shore, Claire Sainsbury, Temple Grandin, Jennifer Birch, Daniel Tammet, to name just a few of the many excellent autistic writers.

2) Sample some of the many fine blogs by adult autistics, such as Inner Aspie, A Deeper Country, Autistic Hoya, Just Stimming, No Stereotypes Here, or Cracked Mirror In Shallot. And if you stumble across blogs written by ‘autism-positive’ parents, read those too.

3) Check out the Autistics Speaking Day site. Learn how and why this was started. Also check out other online writings of autistics like Ari Ne’eman, Jane Meyerding, Jim Sullivan, Dave Spicer or Rachel Cohen-Rottenburg, or sites like The Thinking Person’s Guide to Autism, and those of autism organisations like ASAN and GRASP.

4) Browse through some of the many autistic forums (eg Wrong Planet) and any open social media groups for autistics. Be prepared to be surprised by the range of feelings displayed, thoughts shared, issues discussed, jokes cracked, and pain revealed.

See what we at the ‘coalface’ of autism say about our lives, what they are really like. Learn about the struggles we endure, the challenges we face, the hostility we receive, the lack of support or understanding we labour under. Read how so many of us never reach our potential, or drop out, or get abused, or take refuge in addiction, or consider suicide, or get depressed, or just crawl into our homes like a hermit crab into its shell, because the world has hurt us so badly. Most especially, read how totally invisible adult autistics are.

Read, and weep - and realise that this is just the beginning of your education.

Now you’re ready to be our allies.

- Penni Winter

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