peer support and self advocacy

[el]

A group of us have revived a local peer group. A few years ago, it was guest speaker based, lots of info and networking, but limited discussion. The new group has a skilled and experienced facilitator on board so now it's discussion based, on a rolling topic, so a few meetings on special interests, then a few on mental health and so on.

Still grappling with the pros and cons of those formats. The old style people might feel talked at, that their own experience is ignored. The new style might be 'all talk' and lacking a useful direction.

Given we are kind of committed to a discussion approach now, how can we make talk of practical use? I wondered about tackling meta issues, such as how do you map out resources in reach, and then utilise these to address the practical stuff - housing, employment, dealing with bullying, benefits, getting mental health treatment, being diagnosed, getting a workable social care plan. Trouble is this sounds to me as I write it like self-help BS. Most things are complicated and there are few easy answers, it takes effort, perseverance, luck, and knowing the right people to get help from. It feels peer support can be a helpless endeavour, or at best it only works sometimes.

 

[Rahere]

I'm an experienced hand from GAD days. What you need to do is check your foci, because neuro-diversity is wider than ASD, then contact the respective Associations, to create a lobby group. I'm arguing that the roots of the issue lie in Dabrowsky's pigeon-holing of disruptive pupils in the 1970s, rather than addressing the heart of the problem, lack of provision for the extremes, who fell through the net.

Let's start with "the spectrum". At one end, low-functionality, gradually merging into the general population, then re-emerging at the far end in high-functionality. Hang on a second, methinks, isn't that the definition of the IQ gamut? Or possibly the EQ, less well defined? No, the Authorities are NOT the experts they claim to be, as the almighty fuss about DSM-5 in the US shows.

I'm leaving low-functionality alone, because I know little about it. My subject is high functionality. My call for academic studies fell on stony ground, there seemed to be none in 2015. It's starting to improve, Yale opened it's Genius School in 2020, but it's working with young adults when matters should be addressed far earlier. What is becoming clear is that the diagnostic base is weak. "You're not like us." True. "You should be." Why? That's your problem, not mine. "You're dangerous." Not surprising, it's called self-defence. "We don't understand you." I use my brain fully, you don't. You can't fit a gallon into a pint pot - you get that glazed look before I've even described the gamut. "You're obsessive." Well, that's original research for you. "You melt down." Try being ostracised as a kid. It's called trauma, and we've only just learned how to deal with it. Actually, it's about 90% trauma. I sometimes overload, and Pavlov's Transmarginal Inhibition kicks in, stopping me going over the edge. One of the neuroceptive safety nets. There may be more.

Until psychiatry can actually answer the hard questions, in what way are we different and why, in terms which make sense to us, then I'm reticent to allow them to tinker. The list of crap diagnostics is ridiculous, starting from Freudian analysis and running through The Tavistock Clinic's latest High Court wing-clip (part of my heritage issues, I must admit, albeit not in transgender issues, they copped out on normal medical responsibilities of full disclosure when I was a young adult), with much more yet to come. I've caught the Heads of the Belgian equivalent of the Maudesley in criminal conspiracy, even. Most recently, we discovered that anyone can call themselves a psychologist, qualified or not! My dad was in charge of professional registration for the Institution of Mechanical Engineers, stopping One Wing Low charlatans from designing dangerous kit. You can end up in jail for claiming to be a doctor. There's work to be done, and not by the professionals.

It came as quite a shock to discover Temple Gradin was the first Aspie they'd listened to, half a century after Hans Asperger decided we'd never become good Nazis so were dispensable. They're not really listening to us now, the Cambridge Research Program treats us like Lab Rats. The only one which came in our direction, the Markrams' Intense World thesis, actually xame off the rails when they discovered nothing they could learn from real lab rats applies. And this could be where self-advocacy works, by stopping letting them tell us, instead by telling them. We live it 24/7/365.25, they don't live it at all, so just as feminism has put a stop to mansplaining, perhaps we should stop brainsplaining.