Report on autistic people’s access to mental health services

I’ve just looked again at this thread and it appears that the funding is about to collapse. It doesn’t surprise me, but it does enrage me, :(. This is exactly the sort of information/group that should be run across the whole of the UK, not just Scotland. I am in the UK, and am not surprised by the fact that funding has been taken away. It appears that anything that start to show that it can be helpful and supportive to an autistic individual, the funding is automatically stopped because it would need more funding, and the governments refuse to provide aid to those who need it, like us. For instance, when my statement of special educational needs stopped at 19, and I wanted to continue my education in the way I was receiving it, I couldn’t get it. My mother found a group called SKILLS, a group supporting disabled people in education, it had been around for 40 years, but was stopped, it was funding was taken away by this government.

It also shows up the inadequacies of mental health and other organisations that should be understanding and helping autistic people, but they don’t want to show that they are not being helped. It’s easier to shut them down so that they can hide behind the lies they’ve created, to prevent any of us seeking the support, advice and aid that we require and deserve.

As the woman said in the video, there should be more autistic led training for practitioners, not only for newly diagnosed autistic people, but those still suffering with mental health conditions should be given the correct mental health treatments. Even though autism is not a mental health condition, mental health conditions can arise by the way we have been abused and hurt by the outside world’s lack of understanding and lack of care for our conditions and lives. It is true that only autistic individuals truly know and understand autism, and it is they who should fully be involved in not only diagnosing autistic individuals, but making sure that each of us are provided with the help we need.

In fact, when I think about it, we should all be entitled to an autistic helper/supporter (who has autism themselves) who understands what we’re going through and provides us with the support we need, and to prevent healthcare ‘professionals’ blunders because they do not understand us and the struggles we go through. 

It’s appalling that we are being left to suffer like this, :(. I can never forget the way I was left to suffer after my diagnosis of autism, and no one coming to help me, nor to talk through my issues to provide support.

As much as I sympathise, I think this falls into a common trap that people fall into and it misunderstands the role of government.  Everybody thinks that essentially their current issue-of-day is the World's most important issue, they're passionate about it, it's a travesty etc. etc. They then go on to think that as a result that current issue desperately deserves funding and that the government should do this and sort this problem out for them.

The thing is, there are many competing things deserving of funding.  It's also true, although somewhat movable at any point in time, that there is only a finite amount of resource available.  So if the role of government is anything, it's to try and find the most equitable distribution of resources that it can.

Unfortunately, this is complicated by the democratic system of government that we have, in that politicians tend to favour things that they think will win them votes so that they can continue to be politicians.  As a result, resource distribution is often skewed in seemingly bizarre ways until you realise that all the politicians are trying to scratch each other's backs, and pander to their special interests etc.

Yes, that's a valid point, and you're right that we have to temper our idealism with a healthy dose of realism.

But part of what frustrates me about the current system is that it looks to me like an incredibly inefficient way of doing things - the "not enough resources" argument (the government's, not yours, of course) isn't entirely convincing. The cost of all the assessments and administration that goes into passing people from pillar to post must be phenomenal when I think of how many different government departments, local authority departments, NHS services, and NGO/private providers I've been passed back and forth between for the last few years, only to receive no therapeutic support at all at the end of it.

I find it hard to believe that a mentor/counsellor to come out and visit me for an hour each week, which would be a huge help, would have cost more - especially if you take into account the historical cost of missed opportunities to have diagnosed me much earlier, the ineffective treatments that I received for thirty years, and the long periods of unemployment in my life (I grant that there are limits to how far back I might have been diagnosed, but it was 20 years ago that a counsellor first pointed out that there might be something underlying my depressive episodes, which was subsequently ignored.)

I'm no expert on the economics or logistics of health care, to be sure, but it seems pretty obvious from the evidence that I've seen that the introduction of internal and external markets, forcing PPI deals on NHS trusts, and just basic near-sightedness have wasted a shocking fraction of the resources that could have been used for patient care. This is particularly true for people with mental health problems, where relatively cheap preventive measures could save a huge amount of pressure on acute and crisis services. The ridiculous division of chronic services between NHS and local authority departments is also an unnecessary drain on resources and often prevents effective co-ordination of supports (when they're not each trying to push responsibility onto the other.)

Even if I'm wrong, the fact that the system gives this impression is demoralising and frustrating enough for anyone, and that's hardly something that autistic people need any more of. The worst of it is that the Kafka-esque nature of the system is causing some of the very mental health problems that we would like the system to help us with!

>  I think many autistic people understand the game rather well precisely because we're looking in from the outside and forced to analyse it. Most non-autistic people have the intuitionfor it

Yes.  Good point.  I guess I can see what the game's all about etc. I just find it depressingly counter-productive and a waste of effort. I'd rather have agreed goals and work towards them.

Plus, but maybe this is just me, whilst I could (at some considerable effort) play the game, I don't feel comfortable playing that role - it just feels evil and manipulative to me.

> but I doubt very much that human rights, universal health care, universal suffrage, etc. came about just because of neuro-diverse people.

Agree.  I think my point was that we seem to have a tendency to want change, which often may not suit the norms, and that's what makes us a target.  But thinking about this, I suspect that's because what's currently in play doesn't really suit us, so ofc we're looking for change.  Does that make any sense?

> and many of  the kind of healthcare reforms which would benefit autistic people would benefit far more people than only us.

I think that's what makes me feel uncomfortable to press too much for autism specific things.  It feels to me like it's not solving the right problem.  I don't think autism is especially unique, and people can't be expected to know everything, so I think the root cause problem is: "How do you deliver to healthcare professionals the information they need to know when they need to know it?"

>  I think many autistic people understand the game rather well precisely because we're looking in from the outside and forced to analyse it. Most non-autistic people have the intuitionfor it

Yes.  Good point.  I guess I can see what the game's all about etc. I just find it depressingly counter-productive and a waste of effort. I'd rather have agreed goals and work towards them.

Plus, but maybe this is just me, whilst I could (at some considerable effort) play the game, I don't feel comfortable playing that role - it just feels evil and manipulative to me.

> but I doubt very much that human rights, universal health care, universal suffrage, etc. came about just because of neuro-diverse people.

Agree.  I think my point was that we seem to have a tendency to want change, which often may not suit the norms, and that's what makes us a target.  But thinking about this, I suspect that's because what's currently in play doesn't really suit us, so ofc we're looking for change.  Does that make any sense?

> and many of  the kind of healthcare reforms which would benefit autistic people would benefit far more people than only us.

I think that's what makes me feel uncomfortable to press too much for autism specific things.  It feels to me like it's not solving the right problem.  I don't think autism is especially unique, and people can't be expected to know everything, so I think the root cause problem is: "How do you deliver to healthcare professionals the information they need to know when they need to know it?"