Published on 12, July, 2020
So i made a complaint regarding my care worker who for 2yrs has done very little to help me he visits me every 4 weeks and im lucky if he stops 15mins i know they probably have a lot of people to see in a day but 15mins it's hardly worth it ive been trying to get him to arrange me counselling to help with the abuse i suffered as a child and hes done nothing apparently until i accept and engage with social activity they can't help me, this is the same guy who referred me for my ASD assessment as he thought i was autistic and yet he wants me to do social activities i couldn't imagine anything worse today a woman from the mental health unit rang me regarding my complaint i had made about him and everyone of the points i made she had an answer for,... surprise surprise it's all my fault not theirs so i told her to F%&k Off and hung up the phone im just sick and tired of their constant stone walling and general bloody uselessness so im done last monday i had a horrible encounter with someone who should have some sympathy towards people on the spectrum and with documented mental health problems and he treated me like crap in this country if you suffer with any kind of mental health problem you really are frowned upon like you're just a waste of space i really do despair, im sick of begging for help im better off without them
I sympathise with you Giddy. Inappropriate care for a few decades before my autism diagnosis was frustrating and harmful enough, but nothing has changed since my diagnosis, either. I always think of the old engineers' saying; "if all you have is a hammer, everything looks like a nail"; all of the interventions that have been tried assume that all of my issues are mental health problems, and only temporary aberrations; some are, for sure, but most are consequences of innate neurological differences that I will always have, and hardly anyone working in mental health seems to appreciate this. I was fortunate to have seen (by accident more than design) a counsellor who did specialise in dealing with autistic people, and the difference was immense. But where are they? Why is there no programme to get at least some staff up to speed and learn best practices from people like that counsellor? There is none, and we're just expected to get by with interventions that are designed for completely different psychology than we actually have.
Social services have been no better; I have been refused anything at all because I don't have a learning disability; even though the Autism Act 2009 specifically says that this isn't a valid reason to deny help to autistic people. None of what they suggested before my rejection would have been any use anyway; for example, I don't need teaching how to make meals, the reason I struggle to feed myself is due to executive function impairments and not noticing my hunger, not the inability to learn how to use kitchen utensils! Off my own back, I found a local non-profit autism support service, but I'm not allowed to attend because it requires a referral by social services; even to get counselling from them, I have to hope that my GP can get discretionary CCG funding (this was refused twice when I was first trying to get a diagnostic assessment, so I'm not getting my hopes up.) Without a social services budget, my PIP won't stretch far enough to afford these services, even though I know where to get them and that they are appropriate.
I'm not looking for special treatment, just appropriate treatment. If a non-autistic person can just go to their GP and get suitable counselling after a relatively short wait, then why shouldn't I be able to? What happened to the post-diagnosis counselling and occupational therapy I was promised four years ago at my diagnosis? Why do I have to spend nearly two years appealing PIP, only to find that it's not enough to pay for services which I have had to stress myself out trying to find for myself? Why do I have to apply to an inappropriate department of social services for lack of one which targets developmental conditions? Where is the training for better understanding of autism which the Autism Act assured us would be rolled out across front-line healthcare staff? The supposed improvements and safeguards which were trumpeted when the Autism Act was passed have come to nothing because the legislation is absolutely toothless, and is utterly ignored whenever it's inconvenient (my local authority hasn't even implemented the most fundamental production of a plan for these things, as required by law the best part of a decade ago!)
as always your replies are thoughtful and insightful trog i reckon you could teach these so called experts a thing or two
i totally agree with you i don't want special treatment i just want reasonable consideration and help