Published on 12, July, 2020
And, if so, how on earth can help be accessed? I keep circling around with such issues.
My son has loads of autism-related problems, all of which may seem, from the outside, to be easily resolvable. Extremely poor self care, almost total withdrawal from the world, over-reliance on online gaming, etc etc. I'm sure these sound familiar to many parents.
The stumbling block, though, seems to me to lie in the choice not to engage or seek any form of help. At all. I can well understand this when it comes to MH services. They've not been the best. Or mainsteam services at all - they're chronically underfunded and I accept their views might not coincide with his. But, given the offer of any support, mainstream or alternative, he consistently refuses, although he's obviously struggling.
It all reminds me of situations from the past where, even if my dad saw the GP, he'd tell them he was alright, even when he clearly wasn't. And this, of course, had consequences for the rest of the family.
I feel horrible. I can see how it could be said that I'm basically not respecting free will and the right to self determine. Plus, of course, I'm autistic too so in a way, I should know better.
But I'm also aware that this situation represents a familiar pattern in my family. A pattern which leaves us struggling and deprived of support.
Might this all link in with a common theme in autism - one of fear of other people, officialdom, putting yourself into others' hands (especially figures of authority like medics and dentist), feeling uncomfortable with or even hating any outside interference or unwarrented touching or interventions from others and basically just feeling at odds with the world (which will only disrespect us and show lack of understanding of how we actually experience things - so why would we ask them for help?).
I'm thinking it revolves around the perception of the relationship between self and other - a place where services usually don't know how to meet us. So they'll express regret at not having anything to offer to families of individuals who won't engage or who show "lack of insight" even while these factors can be fundamental to the situations of the very people they're there to serve. And they know it. I'll go further. I can understand their argument on a practical level because, yes, it is hard to help in situations like this and some of it does relate to individual rights. But where the problems are glaringly obvious, a bit of me is thinking that this is a convenient way to avoid building bridges, meeting people where they are, working on forging therapeutic relationships, building trust, promoting engagement and generally not just having a basic "take-it-or-leave-it" menu of what seem like NT solutions to ND problems. To me it feels as though they're saying, "We can't help you because you're behaving just like autistics!".
I feel bad about using the term "unwillingness to engage". In many ways I think the ways in which things are set up have led, bit by bit, to this " unwillingness". But perhaps the real unwillingness lies in services not being set up for neurodivergent people. This means that the problem is put firmly back onto the individual and framed as their failure to contact services, phone up, chase things up, generally behave like an NT.
Still, I am at a total loss as to how to support an adult who, for whatever reason, doesn't engage.
Because of my son's previous (and very negative) experiences with MH services, the GP will send a letter out, once a year, inviting him for a health check at the surgery. This obviously could lead to other referrals and would at least give some peace of mind. Alas, like all other correspondence, I know it will be completely ignored. So the GP service have done their bit but our major worries continue to be ignored.
I don't see how this situation can change.