Report on autistic people’s access to mental health services

As Bushido said, there's nothing reported that surprises me at all, and it's incredibly frustrating and demoralising that this is still what we have to put up with. The dismissive professionals and ineffective treatments that I received before Asperger's-like autism was an acknowledged condition I can almost forgive, but not that so little has changed in the nearly 30 years since I first sought help with my crippling mental health problems. There's barely an experience quoted in the entire report that I haven't had myself at one time or another.

Where I am, mental health services make no provision for autistic people, and the only dedicated NHS autism unit has a two year waiting list for assessments, and absolutely zero resources for follow up. I was supposed to have seen an occupational therapist and had post-diagnosis counselling (in part to check whether I also fitted the criteria for ADD, so my diagnosis wasn't even truly completed.) But the money ran out before I got to the end of the waiting list, so I get nothing.

Local social services will do nothing for autistic adults unless they have significant learning disabilities, which I don't - though I had to spend over a year pissing about in order to find that out, after initially being promised that my reported disabilities ought to qualify me for something. The disability advocate who helped me get through my benefits applications is now redundant after the local authority withdrew funding for half a dozen different local NGOs that assisted disabled people. My last remaining option is to put myself well below the poverty line paying for the support I need out of my benefits (the only local autism specialist provider only takes privately funded or social services funded service users.)

Bushidō said:

In fact, when I think about it, we should all be entitled to an autistic helper/supporter

Yes, I think this would be a fantastic first step towards improving things. The most frustrating aspect for me has been that I have had to take it upon myself to go through so many assessments with different government and service organisations, be bounced from one local authority department to another repeatedly, and to access a provider have to co-ordinate both social services referrals and the benefits to pay a service user contribution. When a non-autistic person wants mental health care, all they have to do is go to their GP and ask for it, which is something I find hard enough in itself to do (I currently have no GP after moving last year - I just can't face having to weed out which doctors at a new surgery are actually worth seeing, if any.) But that's not punishment enough apparently - I have to act as a project manager for multiple agencies just to get a look in, and then after months of effort, discover that there's nothing for me anyway. And the simple fact is that the arseholes in control know damned well they can get away with it because we have a condition that makes it incredibly difficult to advocate and fight for ourselves, or even for the most supportive of families to do so.

Who could better understand our difficulties than someone on the spectrum themselves, someone who could help support us, as autistic helpers/supporters/advocates, etc.? Only those of us affected by autism, or an individual living with someone on the autistic spectrum, can understand what we go through as autistic individuals having to cope out there.

I keep thinking, this training for these so called ‘professionals’ is so ineffective because, how can any one of them understand what it truly feels like to live with autism? When do they have the difficulty feeling as if you’re the odd one out, the ghost in the classroom, the alien in the room? When would they ever have difficulties with eye-to-eye interaction, and the intensity that lurks behind a person’s eyes whenever your eyes meet? When would they ever become affected by mental health conditions because you’ve been so badly misunderstood by careless people in this world? When would they ever have to face the trauma of conditions which leave traumatic scars, like PTSD, which prevent you from being able to cope in every day life, from being unable to cope with authority figures to becoming unable to socialise as easily as everyone else in a neurotypical world? When would they ever feel so alone, so trapped, so housebound, that you’re driven to the internet to find a way to interact with the outside world, because you have no choice? The truth is, they don’t, they don’t understand, :(. Only people like us would be able to. How can any of us be understood if none of these so called ‘professionals’ can be able to relate to us?

As far as I’m concerned, the best treatment for, at least some of our difficulties and traumas, can come from strong lifelong trustworthy friendships, because I feel, only people who we’ve been able to grow to trust will ever be willing and capable of providing us with enough support to help you through your traumas. I need help, I need support, I need trustworthy people who I can write to, I need to find care from the people that understand me. Trust takes time to grow, and in order to build that trust, I need to be able to write to someone long enough.

When I was diagnosed at 14, it was because I had a breakdown at secondary school. I had already been diagnosed with OCD, which should have included SPD because that’s another aspect of my conditions. The psychologist who diagnosed me with OCD left her job to go on maternity leave and at the same time, her husband died, so she never came back. The consultant psychiatrist had ‘issues’ himself. This was supposed to be a diagnostic session, despite the psychologist who diagnosed me with OCD actually being in the room, he seemed to completely ignore this, got annoyed that I wouldn’t go anywhere near his hands/cufflinks to take them off, plus the fact that I wouldn’t have eye contact with him. He was a tall, greasy long haired man with a ponytail and suit. Suddenly, crawled on the floor underneath me in order to try to see my eyes. Who wouldn’t get annoyed and upset with that? Autistic individuals have severe problems with eye-to-eye contact, I certainly do, I find it too intense. He clearly didn’t understand that. As a result, he wasn’t able to make a diagnosis. I had to be sent to a specialised unit and my MP had to intervene in order for me to get an appointment. I was assessed by clinical consultant psychiatrist and several other psychologists in the room. In the diagnostic letter, not only did it say I definitely had autism, but I also had extreme difficulties with eye-to-eye contact, and couldn’t engage with him to actually ask for more additional blocks to add to the building he wanted me to make with him on the table. The fact that I was adamant that I could no longer go back to school was an obvious factor that he wrote in the report that it was imperative that I had to have an individual care coordinator for my case in order to make progress. This never happened, despite my mother constantly referring to the diagnosis letter, nor was I given access to an occupational therapist. At the SENs tribunal that my mother attended, the IPSEA representative had stated that in the occupational therapist’s report that I should have a therapist every week. This was not added to the statement, and neither was the care coordinator. The local authority would not allow this to be put in the statement. The representative from IPSEA wanted to call the consultant psychiatrist to this tribunal. The psychiatrist refused to come, the representative wanted to show what difficulty I could have with socialising in the future if no mental health person interacted with me while I was being home schooled by the local authority, using home and hospital tutors. So, in the end, the local authority managed to get out of serious issues that would have helped me and should have been put in my statement. This is another reason why I am in this situation today.

I agree with Trogluddite, mental health services make no provision for autistic people in my area either. An NAS local support group my mother went to only had mothers who had small children with autism and they were ‘doing very well thank you very much’. They had never heard of someone being taught from behind their bedroom door, and all they could suggest was that I would be better off working in a factory putting cardboard boxes together. Needless to say, my mother never went back to the support group. What kind of support is that, when they didn’t even understand the complexities of my case?

I can also relate to what Trogluddite has mentioned, that social services would do nothing for autistic adults unless they have significant learning difficulties, which I don’t either. I am on benefits at the moment, but there is no way I could negotiate with any advocate or CAB with forthcoming benefits. My mother would have to do that, but I have already seen through autistic magazines that autism is now looked at as less disabling and where one could not travel, could not go out nor speak to anybody is not seen as a disability, but only if you have physical disabilities. Obviously, I agree that people with physical disability should be qualified for benefits, but so should autistic people. It is very wrong for the government/DWP should clearly discriminate against autistic people. There is no way I could even attend assessments, even within my own home, not only am I housebound, I cannot cope with strangers’/authority figures in my home. As for GP, I cannot even go to see a GP.

I agree entirely with Trogluddite with what he’s saying in the quote I’m mentioning below:

Trogluddite said:

And the simple fact is that the arseholes in control know damned well they can get away with it because we have a condition that makes it incredibly difficult to advocate and fight for ourselves, or even for the most supportive of families to do so.

Who could better understand our difficulties than someone on the spectrum themselves, someone who could help support us, as autistic helpers/supporters/advocates, etc.? Only those of us affected by autism, or an individual living with someone on the autistic spectrum, can understand what we go through as autistic individuals having to cope out there.

I keep thinking, this training for these so called ‘professionals’ is so ineffective because, how can any one of them understand what it truly feels like to live with autism? When do they have the difficulty feeling as if you’re the odd one out, the ghost in the classroom, the alien in the room? When would they ever have difficulties with eye-to-eye interaction, and the intensity that lurks behind a person’s eyes whenever your eyes meet? When would they ever become affected by mental health conditions because you’ve been so badly misunderstood by careless people in this world? When would they ever have to face the trauma of conditions which leave traumatic scars, like PTSD, which prevent you from being able to cope in every day life, from being unable to cope with authority figures to becoming unable to socialise as easily as everyone else in a neurotypical world? When would they ever feel so alone, so trapped, so housebound, that you’re driven to the internet to find a way to interact with the outside world, because you have no choice? The truth is, they don’t, they don’t understand, :(. Only people like us would be able to. How can any of us be understood if none of these so called ‘professionals’ can be able to relate to us?

As far as I’m concerned, the best treatment for, at least some of our difficulties and traumas, can come from strong lifelong trustworthy friendships, because I feel, only people who we’ve been able to grow to trust will ever be willing and capable of providing us with enough support to help you through your traumas. I need help, I need support, I need trustworthy people who I can write to, I need to find care from the people that understand me. Trust takes time to grow, and in order to build that trust, I need to be able to write to someone long enough.

When I was diagnosed at 14, it was because I had a breakdown at secondary school. I had already been diagnosed with OCD, which should have included SPD because that’s another aspect of my conditions. The psychologist who diagnosed me with OCD left her job to go on maternity leave and at the same time, her husband died, so she never came back. The consultant psychiatrist had ‘issues’ himself. This was supposed to be a diagnostic session, despite the psychologist who diagnosed me with OCD actually being in the room, he seemed to completely ignore this, got annoyed that I wouldn’t go anywhere near his hands/cufflinks to take them off, plus the fact that I wouldn’t have eye contact with him. He was a tall, greasy long haired man with a ponytail and suit. Suddenly, crawled on the floor underneath me in order to try to see my eyes. Who wouldn’t get annoyed and upset with that? Autistic individuals have severe problems with eye-to-eye contact, I certainly do, I find it too intense. He clearly didn’t understand that. As a result, he wasn’t able to make a diagnosis. I had to be sent to a specialised unit and my MP had to intervene in order for me to get an appointment. I was assessed by clinical consultant psychiatrist and several other psychologists in the room. In the diagnostic letter, not only did it say I definitely had autism, but I also had extreme difficulties with eye-to-eye contact, and couldn’t engage with him to actually ask for more additional blocks to add to the building he wanted me to make with him on the table. The fact that I was adamant that I could no longer go back to school was an obvious factor that he wrote in the report that it was imperative that I had to have an individual care coordinator for my case in order to make progress. This never happened, despite my mother constantly referring to the diagnosis letter, nor was I given access to an occupational therapist. At the SENs tribunal that my mother attended, the IPSEA representative had stated that in the occupational therapist’s report that I should have a therapist every week. This was not added to the statement, and neither was the care coordinator. The local authority would not allow this to be put in the statement. The representative from IPSEA wanted to call the consultant psychiatrist to this tribunal. The psychiatrist refused to come, the representative wanted to show what difficulty I could have with socialising in the future if no mental health person interacted with me while I was being home schooled by the local authority, using home and hospital tutors. So, in the end, the local authority managed to get out of serious issues that would have helped me and should have been put in my statement. This is another reason why I am in this situation today.

I agree with Trogluddite, mental health services make no provision for autistic people in my area either. An NAS local support group my mother went to only had mothers who had small children with autism and they were ‘doing very well thank you very much’. They had never heard of someone being taught from behind their bedroom door, and all they could suggest was that I would be better off working in a factory putting cardboard boxes together. Needless to say, my mother never went back to the support group. What kind of support is that, when they didn’t even understand the complexities of my case?

I can also relate to what Trogluddite has mentioned, that social services would do nothing for autistic adults unless they have significant learning difficulties, which I don’t either. I am on benefits at the moment, but there is no way I could negotiate with any advocate or CAB with forthcoming benefits. My mother would have to do that, but I have already seen through autistic magazines that autism is now looked at as less disabling and where one could not travel, could not go out nor speak to anybody is not seen as a disability, but only if you have physical disabilities. Obviously, I agree that people with physical disability should be qualified for benefits, but so should autistic people. It is very wrong for the government/DWP should clearly discriminate against autistic people. There is no way I could even attend assessments, even within my own home, not only am I housebound, I cannot cope with strangers’/authority figures in my home. As for GP, I cannot even go to see a GP.

I agree entirely with Trogluddite with what he’s saying in the quote I’m mentioning below:

Trogluddite said:

And the simple fact is that the arseholes in control know damned well they can get away with it because we have a condition that makes it incredibly difficult to advocate and fight for ourselves, or even for the most supportive of families to do so.

Thank you very much for letting me know!

I did not know if you have received my letter or not. I was worried about that.

Hi California,

Yes, I received your message, but as I said before, I'm just writing to you as an impartial friend. I need to take my time, and I want to be able to write to female pen pals, I'm sorry, .

I need to communicate with the forum as well. I'll be writing back to you soon, >.<;.

Bushidō said:

I need help, I need support, I need trustworthy people who I can write to, I need to find care from the people that understand me. Trust takes time to grow, and in order to build that trust, I need to be able to write to someone long enough.

I sent a long letter to you this Monday. It took three-four hours for me to write it. Have you received it?

Am I a trustworthy person who you can write to?

I am happy to read your letters long enough and to write to you.

I find your writing very interesting.

Bushidō said:

I keep thinking, this training for these so called ‘professionals’ is so ineffective because, how can any one of them understand what it truly feels like to live with autism?

Indeed. I believe that autistic people need to be involved at every level of determining what our needs might be and how we should be supported. I don't just mean at the level of front-line support services, but also participation in determining what practitioners should be taught about autism, determining the direction of scientific research into autism, and acting as peer reviewers of research papers and assessments of the effectiveness of interventions. It doesn't matter how well-meaning non-autistic advocates might be, their ability to speak on our behalf will always be implicitly limited.

Most importantly, we need that involvement so that we can finally destroy the myth that the more we behave as non-autistic people would, the less autistic we are, and the less we are suffering mental anguish. This seems to be the "gold standard" for all forms of intervention and education of autistic people, with absolutely no recognition that behavioural modification can be extremely traumatic and imposes a huge cognitive load on the autistic person's mind.

We need solutions which work in harmony with our innate instincts and intuitions, not to be made to feel that masking/passing are the only solution to our problems, particularly when we are too young to have the insight to see what the long-term consequences of burying our true selves can be. It must also be recognised that each person's ability to do this is different, and that when an autistic person cannot comply, this is not a failure of motivation or self-control nor a reason to simply push harder. Such skills may be useful to some of  us sometimes, and I have no issue with learning them being a component of support, if only so that we can better understand the society around us; but it is very wrong to treat them as the only solution, and one which we must feel compelled to use at all times, whether the compulsion is instilled explicitly or implicitly.

Bushidō said:

It is very wrong for the government/DWP should clearly discriminate against autistic people. There is no way I could even attend assessments, even within my own home, not only am I housebound, I cannot cope with strangers’/authority figures in my home. As for GP, I cannot even go to see a GP.

Yes, there is too little recognition that processes for accessing support are, in themselves, very often discriminatory. This is rarely considered when, for example, a GP surgery insists on telephone or internet communication for arranging appointments, as if these are universal abilities which could not possibly induce anxiety to the point of complete deterrence. The catch-22 of DWP capability assessments is one of the most egregious examples; if one does not show up for the appointment due to extreme anxiety, it is deemed that the benefit is not required, but if one pulls out all of the stops to attend, the anxiety is deemed not to exist. Damned if you do, damned if you don't!