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

The 'Berlin Wall' for Autistic People

A while back, I wrote a post on some of the reasons why it’s difficult for autistics to articulate our experiences, most especially the lack in the English language of words with sufficient power to describe them. Today however, in honour of Autistic Speaking Day 2011,  I’d like to explore another block to our speaking – that of the attitude of others that precisely because we are autistic, what we say has no worth.

The process is one of invalidation. Because we are autistic, it’s presumed we can’t speak for ourselves, don’t know what we want, can’t articulate it if we do, and if we can and do speak, it’s presumed (and we are told) that what we’re saying isn’t valid, because “that’s just your individual opinion” (even when we make plain we’re speaking for a group), and “we know what you need” (better than you do, is the implication), or even that “if you can talk, you’re not really autistic” (despite our real and ongoing difficulties with life).

The resulting practise is one of patronisation. This can happen anywhere with anyone not on the spectrum, but is appallingly common in many disability or autism organisations, I am not going to name names here, but we all know the sort of organisations I mean. The ones who are reluctant to engage with other organisations run by and for adults on the spectrum, who have few - or none - of us on their boards, and who won’t allow us to help in any meaningful way, even when we offer. The experiences quoted below are fairly typical –

 “[I was] told to hurry-up and develop resources to encourage employers to employ adults with autism... while at the same time being belittled daily as the token autistic employee of the same organisation and experiencing micro-management because of "fears". Offering to review contract submissions valued at $x million only to be rejected as not having any relevant inputs or experience, then immediately afterwards getting to be (sadly and unfortunately!) the casting vote on repeat [government] panels that fair-handedly rejected those same contract tenders, and because they lacked precisely the input offered.”

“I've had this happen with [x organisation]. "We want your input, help us make the (preschool, adult vocational center, etc.) better for the autistics we serve, we'd love to have your input and have you work with our kids." Uh-huh, 3x at various meetings/conferences, not so much as a call back. But boy, do they know how to hand out my number when they get a call they don't know how to handle, like moms looking for group homes with openings or social groups in rural areas...”

“Still laughing at [the leader of an autism organisation] using the example of their having "employed" me… [yet all the while] forbidding me from talking to people about AS [when they came in to the office]. But she uses it to say "we are an aspie-friendly organisation".”

“I have been ignored twice by a Job Network that assists PWD into employment.. well they say they do.. but I would like to see proof of their ability. I had some good success when. I worked with one Job Network with helping PWDs… but yes I have been ignored, even when I explained what I used to do. Maybe I sounded too eager or something rather than just crunching people out like numbers…”

Additionally, when some aspies challenged members of one autism organisation committee on their claim to speak for adults on the spectrum, they were told ‘we know best’, and that, even they weren’t on the spectrum, the members considered themselves ‘qualified’ to speak for autistic people, and ‘not in need of input from autistic adults’.

I should note here that these aspies are mostly past forty years of age, some have advanced degrees, all have relevant life experiences or skills, and are articulate and self-aware. I’m not entirely sure what’s going on in the heads of the members of such organisations, but it does seem obvious they see us as ‘incompetent’ and ‘defective’ somehow in our capacities, and in need of their ‘help’ and ‘management’. This generally without looking at the individual spectrumite’s actual abilities or experience – regardless, they saw them filtered through the lenses of their perceptions of autistic people, rather than the reality in front of them. We are objects of pity, ‘lesser than’, someone to be ‘assisted’, but never, ever their equals. And certainly not fit to have an equal voice or (for the most part, there are some exceptions slowly emerging) to play a substantial or meaningful role in their organisations. Note – ‘their’ organisations – because so far, despite their claim to ‘speak for’ us, we are certainly not fairly represented in their management structures – and in many cases, not at all.

This is the ‘deficiency’ model of autism, which many of these organisations are still actively promoting – and given that they are seen as the ‘experts’ on autism, where they lead, the general public, and governments, will likely follow, in how they perceive autism. So they have a huge influence on how we are seen, how we are reacted to, how we are ‘handled’, what rights and opportunities are granted to us. This model has become a brick wall, a blanket to smother us and keep us helpless and silenced. It is I believe our own personal Berlin Wall, and like that ghastly symbol of oppression, it needs to be torn down.

And the only way to do it is to keep on keeping on – keep speaking, keep thrusting our truths and our realities forward whenever we can, keep pushing at that Wall till it crumbles to dust, in the face of the manifest and undeniable truth – that we are human beings, with the same feelings, the same rights, the same capacity for humanity, the same range of abilities, as everyone else. Only then, when this truth is known, will we be accepted as the equals we are.