But on reading her words, it occurred to me
that we autistics must also experience soul loss. Think on it. We are routinely
denied a full and true expression of our autistic selves. Autistic children
frequently have their stims and other openly autistic behaviours suppressed,
often ruthlessly. Even as adults, our mannerisms are often made fun of. Both as
children and as adults, we are forced into the straitjacket of 'normality', and
are robbed of any authentic sense of self as autistics. Not to mention that
almost daily, we hear the messages that autistics are terrible in one way or
another. Words like 'epidemic', 'stolen', 'tragedy', 'brain-damaged', etc, are
used to describe us. The media regularly publish or broadcast articles and news
items that, whatever their actual words, almost always convey a message of fear
and loathing for the 'modern scourge' we represent, usually with a heaping of
sympathy for the 'poor parents' who have to 'put up' with us. Professionals
regularly release news that they have found yet another possible 'cause' of
autism, and/or discuss us using the language of pathology and disease, all the
results of their research being structured so that we are the ones with the
'lack' of something 'normal' people have. Commonly repeated ideas of autistics
include that we lack any empathy or sensitivity, that we 'don't want' the
company of others, and are incapable of love. Or that we are lacking in
intelligence and awareness (if classic or 'Kanner's' autistic), or are all
computer nerds and hackers, if Aspergers.
We are put through 'treatments' that would
be considered abuse if done to anyone not autistic, incarcerated, or abused
outright (that is, without even the excuse of 'treatment'), and even murdered,
for the 'crime' of being autistic. And even if our abusers and murderers are
brought to justice, they either get off with the proverbial slap on the wrist,
or all the sympathy is for them, not us. We are laughed and jeered at,
isolated and rejected, yelled at and criticised, bullied and told in a million
small and large ways that we are worthless or inferior in one way or another.
We are, even now, after years of autistic activism, routinely not consulted,
even as adults, on what we want, and often not included in running autism
organisations that supposedly are 'for' us. In short, we are treated as if
we're not quite human, not entitled to even the most basic of human rights, fit
only to be 'treated' and 'managed' by the 'real' humans, and ultimately to be
eliminated.
So why wouldn't we experience 'soul
loss'? How, really, could we avoid it? Over and over again, I hear/see
autistics talking of their pain, their confusion, their floundering through the
world, their feeling of 'lack' or 'wrongness', their struggle to achieve some
sense of self-esteem or even self-coherence. They daily dump on themselves,
wonder if they'll ever 'get it right', hate themselves for not being able to do
what 'everyone else' can do with such ease, for having to struggle so hard with
just about everything in life. Sometimes they believe the negative stereotypes
for lack of any better information, but just as frequently it seems the state
of their lives, their lack of a coherent sense of self or even a sense of
purpose, is to blame. For many of us, private tears and shame are an almost
daily experience. I have seen so many autistic individuals broken by their
experience of life, wondering why they should even bother to continue, or
trying to 'fill those gaps' in one way or another.
The only way I've seen this even begin to
be overcome is by these individuals meeting and talking (even just online) with
other autistics with a more positive view of themselves and of being autistic.
Not everyone needs to be some hot-shot autism activist or advocate, but we can
all extend a hand of sympathy, and frequently do. I have seen autistics come
into groups flagellating themselves, and within a relatively short while,
having experienced the help and support and understanding of others, they move
towards a more positive outlook, or at least stop whipping themselves so damn
hard. Even those who've been part of that support and community for ages can be
in need of reinforcement when life assaults them particularly badly, as it does
to all of us now and again. Community is not the whole answer of course, but
it's a very important beginning. I firmly believe that it's only by way of our
autistic communities that we can reclaim those bits of our true selves
shattered by 'soul loss', and begin to heal.
1 Pgs 78-79, The Vein of Gold, by Julia Cameron, Pan Books,
London UK, 1997.
Each word is something I wish to say too. Thank you for being here for me to find. The ugly ducklings do find their tribe. Thank you for reminding me we are swans.
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