Tuesday, September 27, 2011

Autism & Oughtisms: What are you talking about? Of Whales, Ripples, and Advocacy

This morning, we're featuring Autism & Oughtisms' post. If you have a post you'd like to offer for the directory concerning your thoughts about advocacy and dialogues between the different segments of the autism community, please send it to and I'll get it up. Thank you--KWombles

What are you talking about? Of Whales, Ripples, and Advocacy.

Like many others, I have been marvelling at the unproductiveness of the Self-Advocate/Parent Dialogues over at TPGTA. But I don’t think it’s a simple failure of compassion of either side (though there’s definitely some of that going on). Rather, I see a conversation that doesn’t know what it’s even talking about.

On the surface it is a meta-discussion, pleading for parents of autistic children, and adults on the spectrum, to listen to each other. But the validity of the complaint – that one side isn’t listening to the other – is undercut by a lack of concrete examples to ground the discussion. This is incredibly important, because in some areas the experiences and insights of people with autism are highly relevant and a unique and much-needed resource. In other areas, the fact that they have autism is an interesting piece of information but does not give their opinions or experiences more weight.
If the topic under discussion is “bringing up a child who has autism”, then parenting experience is relevant, but again is not the be-all-end-all. It’s important to consider the experience and training of the person we are listening to, but someone can also talk perfect sense and have eye-opening insights despite a lack of training or experience (though this will be rare with something so life-changing and important as parenting). If we want a completely informed opinion we might seek out someone who is autistic themselves, raising an autistic child, and has training relevant to both parenting and autism. But that’s a rarity. And even if you found such an icon, their religious, political or other beliefs might so strongly impact on their advice that it would have always run counter to how you would have raised your own child.

So though we’d like to always hear from those who tick all the right boxes, we must always at the end pay attention to the strength of their arguments: The accuracy of their premises, the validity of their logic, the soundness of the conclusion they draw. If their premises include – for example –  the experience of someone living with very mild autism, and the conclusions we are specifically seeking are ones about the best lives for severely autistic children, then that particular premise might seem absolutely key  in the scheme of things. If the conclusion we’re looking for though is one about the way the autistic mind generally comprehends and interacts with the world, then the severity of autism might not be nearly as important, and the mere experience of living as an autistic person would be highly relevant and carry that much more weight.

There are both autistic people, and those without autism, who (as an example of a divisive issue) want a cure and wish autism didn’t exist. There are also those with and without autism who see autism as a gift and an inherently beautiful aspect of an individual (that needs nurturing and support, rather than denial and destruction). There is nothing inherent in the “having of autism” that means you will feel one way or the other on an issue like this. There may be majorities involved (for example, a majority of autistic people might embrace and cherish their autism), but all that tells you is “we have a majority here.” That matters in democracies, sure, but never to the extent that we don’t care about or don’t want to hear other opinions. Majorities are also irrelevant to certain issues and questions, for example, a majority of the population may say autistic people completely lack empathy if they were asked such a thing, but that doesn’t make it true.

Again, you see that if we don’t know exactly what we’re talking about – attitudes, opinions, or facts – then it is almost impossible to expect agreement at a meta-level about “listening to each other.” Since those engaged with that meta-debate might all agree that listening is great, but still get nowhere because the examples and consequences they have in mind as they converse, colour and motivate responses that otherwise appear un-necessarily aggressive. It’s like an unseen whale moving under the ocean surface. You can see the ocean is unsettled, and talk about how bad that looks when you were expecting and hoping for calm waters, but unless you look under the ocean surface to study and understand the cause, you won’t make any progress.

Even if we take one of the clearer instances of what someone is addressing in such “self-advocate / parenting” dialogues – perhaps they’re focused on attitudes around the advocacy for disability rights – relevant information is glossed over. Are we talking about advocacy for what supports and services parents of disabled children receive; what their children receive directly; or what adult autistics receive? In one of those cases the parents need to be heard the loudest, and in another it’s the autistic adults themselves.

Furthermore, the agenda (for example, focusing on parents or autistic adults) may be completely outside of the control of the warring parties. Sometimes the agenda reflects a particular concern at that point in time; maybe children are being focused on because it’s “International Day of the Child” or “Mother’s Day.” Getting angry at others for utilising a platform they didn’t even create, seems misguided. As do attacks along the lines of “you’ve (as a group) had your say, you’ve been heard, now it’s our turn.” The voices of people affected by autism, are not mutually exclusive. One is the voice of a parent raising an autistic child (whether that parent is NT or ASD, or somewhere in between). Another is a voice of an autistic adult. Either trying to say the other voice is less important or less relevant – at least, without a very clear context to establish the relevance and importance – is confused and unhelpful to say the least.

I’m not saying we can’t have such meta-debates, where we talk about advocacy and relationships between those affected by autism; not at all. What I am saying is that where we see high emotion and lack of progress, it makes sense to try to introduce as clearly as possible what people are actually talking about; what examples and issues they have in mind. What I see is rational dedicated adults passionately agreeing on the importance of listening, while arguing on the largely unspoken subtext (the details and precise issues), in ways that bleed into the “listening” issue; making the disagreement a difficult beast to understand or pin-down, and making it last longer and stronger than it has to.
It’s hard to have meaningful dialogue about the ripples across the ocean, if you don’t talk about the wind, the currents and the whales that make those ripples. Only once we tease apart what we’re precisely talking about, can we figure out where the disagreements lie and why. And since I simply don’t see that occurring over at the Dialogues (yet), I am personally weary about getting involved on that platform. I’d be just another under-explained ripple, trying to change the course of the ocean around me.

Autism & Oughtisms ( )


Anonymous said...

Brilliant post, as usual A&O.

Anonymous said...

Thank you Rachel xxx



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