Lately I’ve been
thinking again about allies. By rights, adult autistics and the parents of
autistic children should be natural allies, as these parents are raising the
next generation of us. We should be working together. But alas all too often we’re
distinctly not. I think the reasons for this are many.
On the one hand,
parents have been fed the message that autism is a Terrible Thing, an epidemic
or disease, that it’s caused by vaccines, mercury, the ‘wrong’ gut bacteria,
too many antibiotics in pregnancy, or whatever the cause de jour is this week.
They’re frequently told, right from diagnosis, that their child needs forty plus
hours a week of intensive ‘therapy’ from a very young age to ‘get rid’ of the
autism, or their kid is doomed. They’re told that their child will have no
future, their marriage will break up, their other children and indeed their
whole family will suffer if they don’t.
Terrified,
overwhelmed, having no understanding of what it really means to be autistic, they
succumb to all this, and some take years to work their way out of it. Many,
alas, never do, and become vociferous advocates of the therapies, or rabid
anti-vaxxers. They are sadly not open to hearing from adults on the spectrum at
all, and can even be hostile. Others simply ignore us, believing that we’re ‘too
high-functioning’ to ‘really understand’ their kids.
Adult autistics,
on the other hand, have had some pretty negative experiences at the hands of
various NTs - sometimes, sadly, including our own parents. We’ve been ridiculed,
yelled at, condemned, beaten up, put down, manipulated or abused in various
ways. We’ve been rejected by our families, thrown out of home, denied access to
services, ended up homeless, incarcerated in mental institutions, misdiagnosed,
fed drugs or given electric shocks. We’ve been arrested, imprisoned, and some
of us have even been murdered. Many younger adults have gone through all that
‘therapy’, and are suffering PTSD as a result.
Those of us who manage
to endure, or evade the worst, know our own survival is always risky. We live
with the knowledge of What Can Happen. We’ve been injured beyond belief, and it
often shows. To expect the most traumatised of us to be friendly to NTs is like
going up to a wounded tiger and patting it on the head, and expecting it to
purr.
Add in a compliant
and unquestioning media, the highly efficient publicity machines of big anti-autism
groups, a largely still-ignorant or pathologising medical and psychiatric profession,
the routine exclusion of autistics from organisations, groups and government
processes that affect us, and it’s no wonder we so often don’t interact.
And yet.
Amazingly, some parents do make it
through all the garbage they’re fed. And some autistics are willing to engage in dialogue with parents, to make the effort,
to try to reach them. And when that happens, it’s something special and
incredible.
For those of you
who don’t know, I am one of the admins of a Facebook group called ‘Autistic Allies’.
We are a mixed group of autistics and parents of autistic children, both on the
spectrum and not. It was originally started by the mother of an autistic child,
who wanted something different from the usual autism parent groups, with their
pity parties, ABA promotion, anti-vaccine talk, and insistence on normalising
their kids. She’d even been thrown out of some of those groups, for disagreeing
with all the negativity.
Soon, other
like-minded parents joined her, along with some of us autistics who were
interested in working with these more open-minded parents. The group has
evolved along the way, and its primary purpose now is to educate people, so
that we are all empowered to go out there and change the public dialogue around
autism. We are thoroughly autism-positive in our approach, allowing no
promotion of ABA or anti-vax or anything else that is negative about autism.
I feel that we are
doing important work. Not all will agree, I know. But to turn the public
discussion of autism around, to eliminate the negative stereotypes, first of
all we need to educate and prepare each other for the storm. To build our ally
base. Only then can we go out there and fight the good fight, educate others in
turn, and change the public perception, and hence treatment of, autism and
autistics. There is *SO* much ignorance out there. We’re very much about
fighting it, in our own way.
And I think it’s a
unique group. We work hard to keep it free of the various types of drama that
plague just about all autism parent and autistic groups, being pretty strict on
trolls, baiters and general trouble-makers of any neurology. We boot those who
break the rules, and let them back in only if they promise to behave. We wield
the Big Stick quite often – and you know what? We just get more and more
popular! People love it! So much so, we’re now over 2000 members and still
growing, and we’ve had to set up a sister support group.
A big reason for
our success is that we insist that the dialogue between the two groups must be,
and remain, respectful at all
times. Parents must come in prepared to listen and truly take in what autistic
adults are telling them. Any parent who says stuff like “that’s just your
autism talking”, or “you’re too high functioning to understand my kid”, or “you
don’t know ABA like I do”, will find it hard in our group!
Autistics, on the
other hand, have to refrain from the kind of abuse hurling, angry outbursts and
factional disputes that are sadly all too common in some of our autie groups. We
know all too well that it’s not a job for everyone - many autistics have been
hurt too badly to willingly engage with any NT, parent or otherwise. But those
who can do it, do, and it works.
Although as far as
I can tell we’re the only group like this, that doesn’t mean no-one else can do
the kind of thing we’re doing. I see positive stuff happening elsewhere,
sometimes, but it’s patchy, and in many cases diluted by a lot of other stuff
happening that’s not so positive.
It needs a
conscious effort to choose the autism-positive approach, and engage in dialogue.
But it can be done. We’re doing it, and it’s time more started doing it. Time
more parents truly listened to us.
Truly understood that we’re not saying what we do just to make their lives
harder. Truly understood that we do know what their kid is going through, that
we’ve been there, done that, and are in fact trying to help them. If only they’d
listen. It’s time for them to do so.
Because when I
look around at all the ‘Autism Awareness’ stuff that’s happening RIGHT NOW,
even as I write, when you understand the roots of it all, and that autism ‘awareness’
all too often means autism ‘bewareness’ – ie that the message is overwhelmingly
negative – you realise just how important it is to offer an alternative.
I repeat – adult autistics
and parents of autistic kids need to work together. Separately, we can end up
lost, alone and isolated, powerless and knowing that the world doesn’t
understand us. But together, we can move mountains, and change the world.
