Done With Mental Health

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!)

Trogluddite said:

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.

This is appalling.  How are they getting around government legislation?  It's on the statute book.  They can't ignore it.

It's something that our local HealthWatch organisation are looking into at the moment; they've made autism services one of their priority projects. Their interim report about our area was shocking; the local authority hadn't even fully outlined any planned pathways for autistic people as of early last year. The local NHS assessment unit that they fund had only two part-time staff to deal with the entire Airedale area; post-diagnosis support was dropped once it became obvious that the waiting list for assessments was rapidly growing (up to 2 years, and spells where they were not accepting any new referrals.) The rejection of support for autistic people without learning disabilities was also highlighted, as was lack of provision for autistic children in local schools.

By and large, they get away with it by simply trying to evade responsibility, bouncing people back and forth between local authority, voluntary, and NHS services. None makes the support I need accessible, but each expects one of the others to do it, and then there are provider requirements about referral sources and PIP passporting. If you say that you know an intervention to be unsuitable, you are simply counted as having been offered support, and told that lack of support is your own fault for being too ungrateful to accept it. To take it any further would mean fighting legal action against the local authority itself, which is unlikely to be eligible for legal aid, and involves obvious difficulties for many autistic people and their families (after 2 years fighting my PIP appeal, it's not something I feel capable of taking on.)

At the same time, many disability support organisations rely on local authority grants, and those were drastically slashed in April's council budget. In my small social circle alone, I know of half a dozen people no longer receiving support for various conditions because of support organisations closing their doors, and I lost the disability advocate who was helping me through my PIP appeal and social services application. I'm trying to find someone again now, to help with my upcoming Work Capability Assessment, but all of the places that helped me before either don't exist any more, or are taking only the most desperate of cases. And no doubt, the DWP will try to make out that my disabilities can't be all that bad because I'm not getting any support!

IMHO, much of this could have been avoided if the Autism Act had specified that all autistic people should have a single point of contact for diagnosis and support, instead of the vague requirement to specify "pathways", which allow arcane circular chains of referrals, and autism units which diagnose, but do nothing else.

Giddy said:

i reckon you could teach these so called experts a thing or two

I think just about any of us here could, but sadly, I'm not sure it would do a lot of good. Prior to PIP being introduced, it was pointed out that it might lead to additional suicides. A while after it had been introduced, sure enough, researchers found an increase in suicide and suicide attempt rates amongst people with disabilities; and. because PIP was introduced region by region, and the rise followed it around the country, there was very little doubt about the cause. Every concession on unfair elements of disability benefits has had to be won by a fight in the High Court one issue at a time, where the government has lost nearly every time. The private companies who were slated for their inability to conduct disability capability assessments properly still had their contracts renewed for another two years to "avoid disruption". The same government has brought local authority finance to its knees in many areas by withdrawing central government grants, which they intend to do away with completely in only a few years. If they can ignore people killing themselves so easily, I don't think that much that I have to say is going to make a huge amount of difference. I just like to rant!

Perdu said:

Unfortunately Healthwatch are controlled opposition

I agree; much like Patient Liaison groups for front-line healthcare services, it is largely an exercise in being seen to have been listened to, and with no power to do anything besides advise people in power who have no incentive to listen. The likes of Black Triangle, Disability Rights UK, PARC, etc. are certainly my first point of call for reporting about issues around autism and disability rights in general.

they should have someone running things who has experience of mental health problems im actually wondering if things will improve if labour gets in they might scrap bedroom tax i was kicked out of my home of 12yrs because it had 2 bedrooms and i only needed 1 and i couldn't afford the extra £15 a week i had to pay it's taken me nearly 2 years to get over loosing my home i still miss it though

they should have someone running things who has experience of mental health problems im actually wondering if things will improve if labour gets in they might scrap bedroom tax i was kicked out of my home of 12yrs because it had 2 bedrooms and i only needed 1 and i couldn't afford the extra £15 a week i had to pay it's taken me nearly 2 years to get over loosing my home i still miss it though