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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