A while back, I wrote in praise of the ‘other’ type of autism parent, the ones who DON’T subscribe to the ‘autism as tragedy’ etc viewpoint. But today I’d like to examine the ones who do, especially those who claim that we adults on the spectrum, especially the activist ones, are, (in my friend John Greally’s words, from the type of emails he gets several times a week) “nothing but a pedo nanny-state interfering molester trying to get at their kid's life and wreck it, to stop the parents grieving their child to death with therapy and crap, to restrain them from lovingly ripping their child's autism mask off, the asshole who caused autism - or if not - the asshole who stopped him getting treatment by whingeing and confusing people, an obstacle stopping funding or taking funding, a fake malingering foil to his child's wellbeing, the distraction from his sons serious needs, the coward hurting his brave son's interests..."
I could go on, but I think you get the picture. But let’s examine these beliefs, one at a time.
1) That we are ‘against’ all therapy, and just want the child to ‘vegetate’ in their autism. Not true – rather, what we challenge is -
(a) the GOALS they hope to achieve through therapy - ie are they trying to ‘normalise’ the child, to ‘eradicate’ their autism - or to teach them practical skills and knowledge that will help them function in the world as an autistic? (I will talk about ‘normalisation’ vs ‘skills-teaching’ in a further post.)
(b) The TYPE of treatment or therapy they use – we have serious concerns about many of these. Some are punitive, a lot are overly demanding of time and energy, most are expensive, many are useless (and hence a rip-off), and some are just downright dangerous.
This DOESN’T mean we are against therapy altogether. See my earlier post about ‘cure’ vs ‘healing’ for more on this.
2) That we want to ‘wreck’ their children’s lives. Again, not true. These children are future members of the adult autism community, our successors in effect, why would we wish to harm them? This seems to be an extension of the belief we are against therapy, but also I believe it results from our statements that autism is not the ‘Big Baddie’. To them, it is, and so they interpret what we say as ‘condemning their child to a horrible life’. I really wish I could find a way to communicate to such parents that being autistic doesn’t necessarily mean having a terrible adult life – that there are good things about being autistic, that even the ‘worst’ features of it (meltdowns, communication difficulties, etc) can be ameliorated or minimized without eliminating the autism itself, and that other negative factors are the result of social attitudes which can be changed, just as attitudes to gays, people of colour, women, etc have changed. Life as an adult autistic is different, sure, but not a death sentence.
3) That we want to stop them ‘ripping the autism mask off’ their children, and thus ‘saving’ them from Big Bad Autism. There’s some truth in this – to the extent that we know that the autism is NOT a mask, not a ‘layer’ superimposed on an otherwise ‘normal’ child. It’s an integral part of their/our being, their/our identity. Attempts to ‘rip it off’ usually only result in the child realizing that this core part of themselves is Not Acceptable to those around them, and so they learn to hide it, to suppress their reactions etc, to their detriment in the long term. Depression and low self-esteem are huge problems for adolescents and adults on the spectrum. Is this really what these parents want for their kids? I know that most take this approach out of love, but it’s a misguided attitude, just the same.
4) That we are standing in the way of their kids getting funding for help and support. There have been a few instances in the States where autism self-advocates have opposed laws that would force health insurance companies to, for instance, pay for therapies like ABA. They’ve done so out of concern that these therapies are not the best way to help autistic children, or that such programs might de facto become the only ‘approved’ way to do so, and other, better ways might not be allowed as a consequence. Perhaps these instances are the source of this belief.
Or perhaps they think that if ‘higher-functioning’ adults get support, it will mean less of the government funding ‘pie’ for things like teacher aides or other support for their kids in school. Or maybe the mere fact that adult autistics exist and are speaking up to say ‘being autistic is okay’, in their eyes is somehow ‘dooming’ their kids’ chances of getting those things?
Whichever, it’s a false belief. The amount of help or support available to anyone on the spectrum, adult or child, is minimal to non-existent. It needs to be increased sizeably for EVERYONE.
5) That we are ‘fakes’ determined to distract attention away from their child’s serious needs. This is actually extremely insulting, not to mention based on false (and outdated) ideas of what autism truly is, namely –
(a) That only the most ‘severe’ or ‘classic’ autism, often now called ‘Kanner’s Autism’, is ‘real’ autism. This ignores the increased understanding of autism we now have. Do these parents just not know about this (which seems unlikely), or do they really think that all of the doctors, scientists, psychiatrists etc, who have been at the forefront of this change to a ‘spectrum’ view of autism (and that’s without mentioning the adult autistics themselves of course), have got it totally wrong?
(b) That the adult autistics now speaking up, simply because they have the ability to communicate, must therefore have no other problems or difficulties – and thus that we don’t have any ‘right’ to complain. It’s the “If you can speak, you’re not autistic” attitude. This is ludicrous. Firstly, many spectrum advocates aren’t in fact able to speak, or to speak consistently – they communicate wholly or partly through communication devices. Secondly, the ability to communicate, verbally or otherwise, is no guide to where the autistic person is in regards to the rest of their life. Autistic adults vary greatly in their abilities, degree of independence, etc, but even the most ‘self-supporting’ and ‘normal-appearing’ ones have major issues in a world that all too often doesn’t understand, tolerate, accommodate or accept them. And THAT is why we speak up!!
Sadly, the incorrect beliefs of these autism parents stop them seeing the things we are, at least potentially, in agreement on. I would really like to say to them –
“Please know that we too have the best interests of your autistic children at heart, even if we differ in what that ‘best’ is, and what is the ideal way to go about getting it. We have more in common than you think, and despite all the rhetoric and insults that have been tossed around to date, I still believe we can and indeed must work together in the long run, for the good of all autistic people.”
If only this message could get through, then a lot of totally unnecessary aggro could be avoided. Imagine if we all worked together to change government policy and social attitudes, instead of warring against each other. Imagine the power that would be unleashed, instead of it being wasted in mutually destructive conflicts.
Imagine the power we could have together. Imagine, and weep.