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?"

Windscale said:

I think ASD people are similar interests are perfectly capable of having relationships with other ASD people who have similar interests and goals.

Dealing with the internet world for all these years, there have been times I’ve come across neurotypicals out there, and the only female neurotypical I’ve found in this world who could both cope with my writing and my political views, lived in India, way too far away for me to ever get to, and out of the realms of reality, but I thoroughly enjoyed writing to her, for the brief moment that it lasted. She could relate to what I was saying, and responded with in-depth discussions of her own, :). She felt that it didn’t matter if I was in a college or not because she found my writing interesting. No one had ever told me that before, neurotypical nor autistic, that was unique, :). However; she was nothing more than a pipe dream for me, and it isn’t fair that I can’t seem to find any other females as interested in writing to me as she was with me, across the internet, generally speaking, either neurotypical or autistic. I wish I could, I’d love to write to them as long term pen pals, :). No one has wanted to write to me since then. She is my age and now married, so there’s no way of going down that road anymore, :(.

My other experience with the neurotypical world involved a female I once knew from school, but unfortunately, she was friends with a bully of mine, which I only discovered through Facebook, and the communications soon turned sour because she told me that she felt I was taking his bullying too seriously because of my autism, :(. She told me in private messages that she didn’t judge people because of their disabilities. Just goes to show you how fickle people’s words can be, doesn’t it?

As for those with autism themselves, well, I’ve been through hell in that domain as well, :(. There was an instance where I’d got to know a female on the spectrum for some time, I’d written to her for years, sent her handmade, heartfelt gifts, we’d even met each other once with both of our mother’s present, she enjoyed herself so much she didn’t want to leave, however; she kept telling me she wasn’t interested in romantic relationships, :(. She was always very brutal and harsh about the subject, but I always felt that if I kept trying to put my heart and soul into it, that maybe my efforts would pay off, but it made absolutely no difference, she was unreachable, despite my best efforts. She feels she’d rather rely on her sister’s aid in the future than get to know me, :(. I’ve been having to search across the internet to find other females to write to because of how hurtful this whole experience has become. I feel like I’ve been used and abused for all these years, which has only caused my emotional PTSD to worsen. It’s got the point where I’m biting my own arm because of how much pain it’s causing me, :(. I don’t know what else to do anymore. I put my heart and soul into everything I do, but I never end up with any success for my efforts, it makes me so angry, sick and tired, I feel so lost, so trapped, so misunderstood, :(.

Now I feel like the ghost, the alien, all over again, only instead of being in the school system, I’m now in the internet and wider world. From what I’ve learnt in life so far, it’s way too cruel, it chews you up and spits you out, no matter how hard you try to succeed, :(.

When will I ever have any success in the social world, am I always meant to suffer? What am I supposed to learn from all this pain? I don’t understand it, :(. I’m just a human being affected by difficulties, it’s not my fault, and I can’t help it, but I’m still me, I’m still trying the best I can, I’m just being myself, as I’ve always been. Isn’t that what people keep telling us, ‘To be ourselves’? I am myself, I always have been, and I can’t be anything else, I can’t lie to myself nor others. I feel that to lie to others is to expect the same in return, that’s how I view life. If you’re looking for genuine and honest people, I aim to be genuine and honest myself, that’s always been my golden rule, despite the world’s twisted view on life. I was always against the grain, I couldn’t stand the liars, the corrupt, the evil in this world, and I felt, if I were to cover myself, I’d end up turning into that which I hated, :(. I view life the same way as I viewed the school system, we’re all trapped, living in a prison, a living nightmare. The inmates all begin to attack each other the moment you begin to show even a bit of your true self. They take the moment they see any sign of truth, genuine feeling or vulnerability as something to exploit and use against you. Isn’t that like the school world, isn’t that like life in general, isn’t that the view of politicians?

Windscale said:

Also, we don't accept that things have to be the way they are because that's the way they are.  For norms this is very dangerous thinking because potentially we're always looking at tearing up their comfortable currentness and replacing it with something that they may not be suited with.

I have always viewed life, the system and corruption as a waterfall. When the top of the waterfall is affected with poison, every level, right down to ground level, and below, gets contaminated along the way. From what I’ve discovered through research across the internet, I can’t see any exceptions to that rule, unless you’re truly independent, freelance and have a mind of your own to use, when you are tied to the system, your judgement is always going to be coming from orders from above. If you fail to comply, you end up reprimanded for your actions and may even get the sack if you fail to carry out those orders, no matter how immoral they may be. There is no such thing as independence if you are being paid by the local authority and government, and that’s why I’ve noticed such a lack of care in this world, because if those in charge are corrupted, you’re never going to get the help and support you need, no matter how much you may be suffering, since they aren’t the ones having to face you, nor your difficulties, they don’t live your life, the higher up in the chain they are, the more out of touch they are with the general population, and that goes for more than just autistic people, that goes for neurotypicals as well.

This reminds me of the debate I once had on another ASD forum, lol.

Windscale said:

I think on the whole we struggle to understand, see the point of and be good at the "norm game".

In very general terms, I agree about the "seeing the point" and "being good at" parts, but less so the "understand" part - in fact, 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 intuition for it, so they don't have to understand; that's why the emotive rhetoric and tribalism used by politicians is so effective on so many of them.

But far from all of them. Things do have to be the way they are now because that's what the past has led up to, but I doubt very much that human rights, universal health care, universal suffrage, etc. came about just because of neuro-diverse people. Throughout history there have been plenty of "norms" who "tore things up", and many of  the kind of healthcare reforms which would benefit autistic people would benefit far more people than only us.

I see framing the issue as autistic versus non-autistic as too polarising. I wouldn't be having this debate with you now if it weren't for countless non-autistic people who, directly or indirectly, have supported me and still do; and other autism support forums I frequent have plenty of members with some very distasteful social and political views (and a complete lack of will to respectfully debate as we're doing here!)

Which I think makes my point that at any point in time it's all about what the politicians want to make them look good so they can be re-elected and continue to be politicians...

Norms aren't, on the whole, rational - they are social and they so like to maintain the social hierarchy and maintain or increase their social status.  At any point in time you can either be perceived to be accepting the social edifice, strengthening it, or weakening it.  People who accept are seen as handy sheep to use, people who are trying to strengthen their position in the hierarchy are "players" and people seen to be working against what any norm wants is a "destroyer" and enemy.  All of that is in constant flux as the norms assess what they want next out of the game and what's going to be in their interests at any point in time.

I'm not saying that ASD people are anti-social, but I think on the whole we struggle to understand, see the point of and be good at the "norm game".  Our outside-ness from the game tends to make us be perceived as either sheep to be used, enemies, or at best uninteresting and harmless.

I think we are probably differently-social in that we tend to be interested in how things are, how we would like them to be, and what the truth/falsehood of things.  Also, we don't accept that things have to be the way they are because that's the way they are.  For norms this is very dangerous thinking because potentially we're always looking at tearing up their comfortable currentness and replacing it with something that they may not be suited with.  I think ASD people are similar interests are perfectly capable of having relationships with other ASD people who have similar interests and goals.

There are problems of large scale organisation and organisational inertia, of course. But this does not excuse aspects such as introducing market economics or PPI, which were driven by political and economic ideology, not by any analysis of organisational or clinical needs, and in the face of plenty of rational arguments why they would predictably lead to the kinds of dysfunction which we're now seeing.

One only has to look at how whistle-blowers in the NHS and social services have been treated to see that maintaining the pretence that these things have been beneficial has been placed a long way ahead of the needs of both patients and front-line staff. Rational analysis of what goes wrong and why, and what could be done to help, has been cynically and deliberately stifled by gagging those people who are in a position to know.

That there are problems, and that new problems may arise as demographics and clinical knowledge change, certainly are inevitable. However, going to the lengths which current and historical administrations have to hide anything negative, to the point of destroying careers and wasting a fortune on legal fees, is morally unforgivable in my opinion. Yes, that's what politicians of all stripes do, I've been around long enough to know that only too well, and it is certainly valuable to acknowledge the successes. But change for the better cannot happen if staff and service-users simply accept the failures as inevitable and say or do nothing to challenge them - if democracy means anything at all, it requires the population to be well informed of the true situation, and even moaning on the internet has it's place in that!

Anything involving a large number of people is inefficient.  A large part of that inefficiency is somehow trying to manage the fact that there are so many people involved and trying to keep it moving in some sort of the same direction - ish.  Furthermore, for any sort of large bureaucracy, eventually it's main aim is to somehow keep itself going, and everything else, including what's it's supposed to be doing, becomes almost tangential.  Then you have the problem that for any endeavour, as you try and scale it to use more people, inevitably the average skill level decreases.

Or to put it another way, the NHS is a massive victim of its own success and is now tottering under the sheer weight of its enormous size.  So really, the reality of the situation is, you shouldn't be surprised that it has difficulties, you should be amazed it still manages to mostly do the right thing a lot of the time.

It's much like the fact that people used to moan about Windows running on DOS.  The moans were mostly misplaced, because really the thing wasn't that it was imperfect, the thing was that it was amazing it managed to work as well as it did!

Anything involving a large number of people is inefficient.  A large part of that inefficiency is somehow trying to manage the fact that there are so many people involved and trying to keep it moving in some sort of the same direction - ish.  Furthermore, for any sort of large bureaucracy, eventually it's main aim is to somehow keep itself going, and everything else, including what's it's supposed to be doing, becomes almost tangential.  Then you have the problem that for any endeavour, as you try and scale it to use more people, inevitably the average skill level decreases.

Or to put it another way, the NHS is a massive victim of its own success and is now tottering under the sheer weight of its enormous size.  So really, the reality of the situation is, you shouldn't be surprised that it has difficulties, you should be amazed it still manages to mostly do the right thing a lot of the time.

It's much like the fact that people used to moan about Windows running on DOS.  The moans were mostly misplaced, because really the thing wasn't that it was imperfect, the thing was that it was amazing it managed to work as well as it did!

>  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?"

Windscale said:

I think ASD people are similar interests are perfectly capable of having relationships with other ASD people who have similar interests and goals.

Dealing with the internet world for all these years, there have been times I’ve come across neurotypicals out there, and the only female neurotypical I’ve found in this world who could both cope with my writing and my political views, lived in India, way too far away for me to ever get to, and out of the realms of reality, but I thoroughly enjoyed writing to her, for the brief moment that it lasted. She could relate to what I was saying, and responded with in-depth discussions of her own, :). She felt that it didn’t matter if I was in a college or not because she found my writing interesting. No one had ever told me that before, neurotypical nor autistic, that was unique, :). However; she was nothing more than a pipe dream for me, and it isn’t fair that I can’t seem to find any other females as interested in writing to me as she was with me, across the internet, generally speaking, either neurotypical or autistic. I wish I could, I’d love to write to them as long term pen pals, :). No one has wanted to write to me since then. She is my age and now married, so there’s no way of going down that road anymore, :(.

My other experience with the neurotypical world involved a female I once knew from school, but unfortunately, she was friends with a bully of mine, which I only discovered through Facebook, and the communications soon turned sour because she told me that she felt I was taking his bullying too seriously because of my autism, :(. She told me in private messages that she didn’t judge people because of their disabilities. Just goes to show you how fickle people’s words can be, doesn’t it?

As for those with autism themselves, well, I’ve been through hell in that domain as well, :(. There was an instance where I’d got to know a female on the spectrum for some time, I’d written to her for years, sent her handmade, heartfelt gifts, we’d even met each other once with both of our mother’s present, she enjoyed herself so much she didn’t want to leave, however; she kept telling me she wasn’t interested in romantic relationships, :(. She was always very brutal and harsh about the subject, but I always felt that if I kept trying to put my heart and soul into it, that maybe my efforts would pay off, but it made absolutely no difference, she was unreachable, despite my best efforts. She feels she’d rather rely on her sister’s aid in the future than get to know me, :(. I’ve been having to search across the internet to find other females to write to because of how hurtful this whole experience has become. I feel like I’ve been used and abused for all these years, which has only caused my emotional PTSD to worsen. It’s got the point where I’m biting my own arm because of how much pain it’s causing me, :(. I don’t know what else to do anymore. I put my heart and soul into everything I do, but I never end up with any success for my efforts, it makes me so angry, sick and tired, I feel so lost, so trapped, so misunderstood, :(.

Now I feel like the ghost, the alien, all over again, only instead of being in the school system, I’m now in the internet and wider world. From what I’ve learnt in life so far, it’s way too cruel, it chews you up and spits you out, no matter how hard you try to succeed, :(.

When will I ever have any success in the social world, am I always meant to suffer? What am I supposed to learn from all this pain? I don’t understand it, :(. I’m just a human being affected by difficulties, it’s not my fault, and I can’t help it, but I’m still me, I’m still trying the best I can, I’m just being myself, as I’ve always been. Isn’t that what people keep telling us, ‘To be ourselves’? I am myself, I always have been, and I can’t be anything else, I can’t lie to myself nor others. I feel that to lie to others is to expect the same in return, that’s how I view life. If you’re looking for genuine and honest people, I aim to be genuine and honest myself, that’s always been my golden rule, despite the world’s twisted view on life. I was always against the grain, I couldn’t stand the liars, the corrupt, the evil in this world, and I felt, if I were to cover myself, I’d end up turning into that which I hated, :(. I view life the same way as I viewed the school system, we’re all trapped, living in a prison, a living nightmare. The inmates all begin to attack each other the moment you begin to show even a bit of your true self. They take the moment they see any sign of truth, genuine feeling or vulnerability as something to exploit and use against you. Isn’t that like the school world, isn’t that like life in general, isn’t that the view of politicians?

Windscale said:

Also, we don't accept that things have to be the way they are because that's the way they are.  For norms this is very dangerous thinking because potentially we're always looking at tearing up their comfortable currentness and replacing it with something that they may not be suited with.

I have always viewed life, the system and corruption as a waterfall. When the top of the waterfall is affected with poison, every level, right down to ground level, and below, gets contaminated along the way. From what I’ve discovered through research across the internet, I can’t see any exceptions to that rule, unless you’re truly independent, freelance and have a mind of your own to use, when you are tied to the system, your judgement is always going to be coming from orders from above. If you fail to comply, you end up reprimanded for your actions and may even get the sack if you fail to carry out those orders, no matter how immoral they may be. There is no such thing as independence if you are being paid by the local authority and government, and that’s why I’ve noticed such a lack of care in this world, because if those in charge are corrupted, you’re never going to get the help and support you need, no matter how much you may be suffering, since they aren’t the ones having to face you, nor your difficulties, they don’t live your life, the higher up in the chain they are, the more out of touch they are with the general population, and that goes for more than just autistic people, that goes for neurotypicals as well.

This reminds me of the debate I once had on another ASD forum, lol.

Windscale said:

I think on the whole we struggle to understand, see the point of and be good at the "norm game".

In very general terms, I agree about the "seeing the point" and "being good at" parts, but less so the "understand" part - in fact, 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 intuition for it, so they don't have to understand; that's why the emotive rhetoric and tribalism used by politicians is so effective on so many of them.

But far from all of them. Things do have to be the way they are now because that's what the past has led up to, but I doubt very much that human rights, universal health care, universal suffrage, etc. came about just because of neuro-diverse people. Throughout history there have been plenty of "norms" who "tore things up", and many of  the kind of healthcare reforms which would benefit autistic people would benefit far more people than only us.

I see framing the issue as autistic versus non-autistic as too polarising. I wouldn't be having this debate with you now if it weren't for countless non-autistic people who, directly or indirectly, have supported me and still do; and other autism support forums I frequent have plenty of members with some very distasteful social and political views (and a complete lack of will to respectfully debate as we're doing here!)

Which I think makes my point that at any point in time it's all about what the politicians want to make them look good so they can be re-elected and continue to be politicians...

Norms aren't, on the whole, rational - they are social and they so like to maintain the social hierarchy and maintain or increase their social status.  At any point in time you can either be perceived to be accepting the social edifice, strengthening it, or weakening it.  People who accept are seen as handy sheep to use, people who are trying to strengthen their position in the hierarchy are "players" and people seen to be working against what any norm wants is a "destroyer" and enemy.  All of that is in constant flux as the norms assess what they want next out of the game and what's going to be in their interests at any point in time.

I'm not saying that ASD people are anti-social, but I think on the whole we struggle to understand, see the point of and be good at the "norm game".  Our outside-ness from the game tends to make us be perceived as either sheep to be used, enemies, or at best uninteresting and harmless.

I think we are probably differently-social in that we tend to be interested in how things are, how we would like them to be, and what the truth/falsehood of things.  Also, we don't accept that things have to be the way they are because that's the way they are.  For norms this is very dangerous thinking because potentially we're always looking at tearing up their comfortable currentness and replacing it with something that they may not be suited with.  I think ASD people are similar interests are perfectly capable of having relationships with other ASD people who have similar interests and goals.

There are problems of large scale organisation and organisational inertia, of course. But this does not excuse aspects such as introducing market economics or PPI, which were driven by political and economic ideology, not by any analysis of organisational or clinical needs, and in the face of plenty of rational arguments why they would predictably lead to the kinds of dysfunction which we're now seeing.

One only has to look at how whistle-blowers in the NHS and social services have been treated to see that maintaining the pretence that these things have been beneficial has been placed a long way ahead of the needs of both patients and front-line staff. Rational analysis of what goes wrong and why, and what could be done to help, has been cynically and deliberately stifled by gagging those people who are in a position to know.

That there are problems, and that new problems may arise as demographics and clinical knowledge change, certainly are inevitable. However, going to the lengths which current and historical administrations have to hide anything negative, to the point of destroying careers and wasting a fortune on legal fees, is morally unforgivable in my opinion. Yes, that's what politicians of all stripes do, I've been around long enough to know that only too well, and it is certainly valuable to acknowledge the successes. But change for the better cannot happen if staff and service-users simply accept the failures as inevitable and say or do nothing to challenge them - if democracy means anything at all, it requires the population to be well informed of the true situation, and even moaning on the internet has it's place in that!