Voices

Right then. Forgive me if this gets a bit ranty. I've been annoyed today.

I started a post a little while back with someone having blocked me on twitter, an antivaxxer. To be honest, this whole business is rather new to me. I've been blocked by the odd Nazi before, and I take no little pride in having been blocked by a major anti-EU campaign (leave.eu, who are currently, the poor dears, being shown to be massively corrupt cynical far right cheats).

Anyway, today I was blocked by somebody who wasn't a) an antivaxxer, b) a Nazi, or c) a cackling white-cat-stroking Bond villain. Someone who posted this:

(I haven't redacted @PEAT_NI, in case anyone's wondering, because it's a campaign group and not an individual.)

Why was I blocked by this apparently kind, helpful person? For reasons which, I'm now finding out, are depressingly common amongst the autistic community. I used my voice. I specifically said that autistic adults should be listened to when we object (and we overwhelmingly do) to this kind of attitude, this scaremongering, this harmful 'treatment'.
 
How is it that groups and individuals who state so clearly their commitment to helping autistic people are so committed to silencing autistic people? Why is it that autistic adults are to be treated as some kind of dangerous enemy in matters that pertain directly to us? I find this deeply disturbing.

I fear that it is because we put the lie to their scaremongering. If you, for whatever reason, want to convince allistic parents of autistic children to do such-and-such, and your argument is that otherwise your child will never grow up, lead an independent life, find friends and love and a career, then people like me are suddenly a problem: we are evidence to the contrary. 

Some things about me:

• I didn't stand or walk until I was almost three
• I was so completely unresponsive to auditory stimuli as a baby that doctors told my mother I was deaf
• I had meltdowns when things didn't go as I'd expected until my mid-teens (I still have them internally, but can mask, which is another discussion for another day)
• As a child and well into adolescence, I spent all my time at home, never going out socialising, just staring at the computer
• I had all sorts of picky food limitations
• I never showed any interest in girls (or boys) as a teenager
• I wasn't diagnosed as a child, but when I was 36
• I have a full-time job (even if, as I mentioned in blogs passim, I'm undervalued) in an area where I can help save lives
• I live by myself, look after myself, manage fine
• I travel as often as I can afford
• I cook, and I cook well, with a broad and varied repertoire
• I may be single right now, but I've had a mixture of short- and long-term relationships, I've been married, I've had a fairly normal range of ups and downs in that regard
• I walk. A lot. 

My life might be a hell of a long way from perfect (I'll go into that another day, when I feel brave enough), but I have - to take a lead from the above image - dignity, life skills, independence and inclusion. Just like countless other autistic adults. Clearly, if an organisation's message is only we can save your child from a ruined life, then they have to silence us, stop us from putting the lie to that message. But if they want to help autistic people, they should listen. The two positions are mutually exclusive. With us or against us.

This, however, leads me to ask another question, one for which I have no answer at present. Why do this?

In my experience, campaigning for something whilst silencing dissenting voices who have experience and/or expertise tends to have one of two motivations, or perhaps sometimes both:

• They want to sell something which does not work, and can't risk anyone impacting upon their profits by showing them up as liars (e.g., homeopaths, naturopaths, etc.)
• They are campaigning for religious reasons, and believe that winning people over will be their key to heaven, or whatever rewards their faith offers to them (peddlers of 'gay cures' spring immediately to mind)

There certainly are religious/cult-based anti-autism campaigns out there, but they're not the mainstream. And I'm willing to give the mainstream groups the benefit of the doubt as to whether they're in it for the money - they don't, by and large, appear to be selling their 'treatment' for a profit.

So why are we being shut out? Is it maybe because, and I'm really just winging it here, I haven't thought this through at all, but maybe because they have built an industry on the emotional revenue of playing the autism martyr parent. The sunk-cost fallacy, whereby investment and commitment increases in spite of an absence of benefit, because turning around is psychologically unmanageable, appears to be involved here - but with an investment in time and emotion and the belief in ones own value (as a martyr and/or campaigner), rather than a financial commitment.

Whatever the cause, this must come to a head in time. This tendency, the autism martyr parent, the allistic campaigns for a cure, the external voice over the internal, has grown with recent increased frequency of diagnosis. Consequently, so much of the discussion today centres around small children. But those children will grow up. Their voices will, must, eventually drown out those of their parents. Sheer numbers alone will ensure that, one day, autistic voices can no longer be ignored.

What I ask of anyone reading this is: please, do not be on the wrong side of history. Listen to those voices, and listen now.