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 delay and prevaricate in my own brain when I know I have to engage with someone I don't want to. I avoid interacting with people who I judge will try to manipulate me - like dealing with service suppliers. I know they will have a well-used script to manipulate me and I know I will not be able to process fast enough to keep up and spot it.
Typically - for example, Sky TV - they crank up the monthly charges so you have to ring them, speak to a million people with difficult accents and then try to work out which of the many options they talk very quickly about are actually a good deal.
The call will take almost an hour so they know they have the upper hand - it's basically a tag-team battle for them - many against one. I ended up cancelling everything except broadband. I'll wait until their retention team come to me to offer something worthwhile.
I hate having to do this type of call. I'd rather do without than deal with the stress of interacting with people.
Plastic said:I'd rather do without than deal with the stress of interacting with people.
Ah, yes, it's this bit that troubles me. I too tend to do this. Taken to an extreme, though, I imagine it could lead to a very pared down existence (although that is maybe my value judgement because one person's pared down existence might be seen as augmented or improved in someone else's eyes). Differences within families too. My dad's idea of a fair living was my idea of chronic deprivation.
But my thinking is also that, although this might be problematic when dealing with service suppliers, it might become catastrophic when dealing with the NHS, social services or the DWP. e.g. significant medical issues might be rationalised away to avoid contact plus, as we're now experiencing, if an individual refuses services then the family (who might also be affected) might be left without recourse.
So... We can manage very well without Sky but support services are another matter.
Yes - I'm aware of cutting my own nose off - so I force myself to interact with people - but the decompression and analysis afterwards is exhausting.
I have to undergo some horrible medical procedures later this year but I know that I would be foolish to cancel them.
As you say, I can live without SkyTv but some things are important.
I can see that it's a huge risk to take the easy route and just avoid everything I don't like doing - short-term gain for long-term pain.
That's true. I've also tended to do that in other situations such as socialising and the workplace. Do what's necessary then maybe lie in a darkened room for hours afterwards.
But I did manage to motivate myself to drive there every week, get the treatment and get myself together enough to drive home afterwards every week.
If I can manage that, then I can cope with anything - at the time - I just fall apart later.
Yes, I would find it a struggle to cope with that.
I have no problems with MRIs but needles freak me out.
Unfortunately, I had to have extracorporeal leukocyte apheresis so every week for 3 months I had to go to hospital and they would stick needles the size of Bic biros into both arms and I'd sit there for a couple of hours having my blood filtered - the returning blood was stone cold so my arm would gradually go completely numb.
It was unbelievably stressful - I passed out lots of times.
It's really tough on the veins too - lots of damage - but the end result was worth it.
The MRI bothers me because of the enclosed space plus also their usual underestimate of how long I'll be in there. Plus on one occasion the cannula for the contrast dye hadn't been put in properly and when the dye went in, pressure built up, it suddenly became very painful and dye squirted all over me. Seemed to take far too long to get me out again, although it must only have been seconds. So that experience feeds into my anxious mind.
I now cope with meditation and breathing techniques, but I'd basically rather cancel.
I hate it when they do that. Playing the tick-box game to fob you off.
I don't mind MRIs - I've had lots - I sometimes fall asleep in their listening to the machine (hard German dance music).
The longest was a Gadolinium test with the injected contrast media - well over an hour with the tube in my arm tugging like it was caught on something - proper stress.
I also remember seeking help from CAMHS for my son when he was around 15. They refused, saying he'd have to approach them himself. And that was the start of a huge problem because I could see straight away that he was simply too anxious and depressed to approach them.
Yes, I recently had to go for an MRI scan with contrast dye which took an hour or so - that's an hour or so actually in the scanner, travel time and waiting around before and afterwards were several extra hours. Plus even more time feeling anxious about it beforehand. It actually felt like it took a few days to recover from that and i was doubting my ability to go through with it right up until I got there.
I can also vividly remember that in my teens I was too anxious to go to the GPs to seek help with my debilitating anxiety. It seems absurd. Those with lesser anxiety who weren't too anxious to arrange and attend an apointment would be able to access help. Whilst I would have some reservations about the quality of the help in this case, i look back and see that i was unable to access help because of the very nature of the condition for which i needed it!