So, the second attempt to get an assessment for an autism diagnosis never even got as far as the launch pad. I should, right now, have been sitting in a hospital with a psychiatrist, probably looking at books of frogs again, and maybe acquiring the piece of paper that will enable me to get any help that might be available and will make me feel believed, but I’m actually at home, making blog words again and attempting to survive another day on the planet.
I’m still not completely sure that we have the full story or know exactly what’s been going on behind the scenes, and, to be honest, I think that most of the people involved don’t really know what’s going on either, which is a big part of the problem. But as far as I can gather, the main problem seems to stem from the fact that not only am I autistic (or, as far as the authorities are concerned, under investigation for autism), but I also have other mental health issues and a long history of mental health problems, and, it now seems, rather a substantial amount of trauma from the years of masking and lack of support, and the difficulty seems to be that in order to diagnose me with autism they need to work out exactly how my autistic traits interact with all my other mental health problems. The only person who can do that under my current referral is an autism specialist psychiatrist, and the only one in my county and the next county is currently on long-term sick leave. So we are now at impasse – the people who would diagnose me if I was an “ordinary autistic” are unable to deal with me because it is beyond their remit, and there is nobody else available.
We started to discover this yesterday when my husband got one of his “feelings”. My husband has a talent for spotting patterns that results in his occasionally appearing almost supernatural. He has, in the past, resigned from a job just one month before the company went bankrupt, predicted that a coach due to turn up to drive a bunch of people the length of the country wouldn’t show (and, as a consequence, sorted the problem before 50 people had to spend the night standing on the street). He got a “feeling” yesterday, so he called the assessment centre at the hospital just to “confirm” that all was well and also to ask for a bigger room with some natural light.
Initially, all seemed fine. A second psychologist had been found to join the first one at the assessment, and the two were going to be having a meeting about me to discuss my case in the early afternoon. I wasn’t wildy optimistic about the second person being another psychologist, because I know that I really need a psychiatrist (I’ve had a lot of dealings with both counsellors and psychologists in the past, and have generally found that my mental health issues are way beyond their capabilities – some have been lovely but not helpful, one counsellor I saw was actively damaging and the only reason I kept going to the appointments was that I got an afternoon out of the office environment which was damaging me even more badly than the counsellor did). However, the psychiatrist was still off sick, and there was no suitable psychiatrist available to cover, so it was psychologist or nothing.
Anyway, my husband also gleaned some other information from this first contact with the service. He discovered that the first assessment had been stopped because of my meltdown. There was something about guidance being to stop assessments if I became distressed. He tried to explain that the meltdown wasn’t “distress” in the conventional sense, but part of the condition under investigation, but because meltdowns are not on the list of official criteria for autism, there is again a situation of impasse. A solution was found to this difficulty in that we would produce a letter, which I would sign, to say that if I had a meltdown in the assessment again I was to be allowed time out to go for a walk round the block, get away from the artificial lighting and any loud voices, stim safely on my own, and then return to the appointment. My husband also looked up and printed out the National Autistic Society’s information on meltdowns for guidance, since meltdowns are quite frequent and common for me, and it was agreed that a more suitable, larger, room would be provided.
So this wasn’t exactly perfect, but it did seem that we were starting to get somewhere and that maybe things would get sorted out second time round.
Then the two psychologists had their meeting about me, and the dung hit the wind machine once more!
I’ll just explain a little about the process we’ve gone through to get to this stage, because it seems that the whole process of getting me assessed might have gone wrong earlier in the system, and it also appears that we have (before I’ve even received any diagnosis or help) thrown up a communication problem in the county’s system for diagnosing autistic adults with mental health problems.
First, after my self-diagnosis in September, I went to see my GP. My GP, who has known me for over a decade, instantly had a “lightbulb” moment the minute I said the word “autism”, and pretty much kicked herself for not seeing it earlier. Totally obvious once you see it. I started to self-identify as autistic from that point onwards and my GP referred me to the county’s triage service – the first people who will assess me initially and refer me on for a full autism assessment and formal diagnosis.
The next thing that happened was that I received a bunch of forms from the triage service. I dutifully filled in the forms and the questionnaires, telling them why I wanted a diagnosis, a bit about my history (including all my mental health history), how I was unemployed etc etc. and I returned the forms to the triage service.
A few days later I got an e-mail from the triage service saying they’d reviewed my forms and information and that they could offer me a pre-assessment chat if I wanted one, but that I really didn’t need one and they were happy to refer me to one of three centres for assessment. All I needed to do was to select one of the centres and tell them which one. I selected the centre closest to home, the hospital in our nearest city, where I knew the parking situation and so on, since I knew it would be a stressful occasion and I wanted to minimise stress.
Around a week later I received another lot of forms and questionnaires, this time from the hospital, one lot to be completed by my mother (my husband interviewed her down the telephone and we filled in as much as we could) and one lot to be completed by me. We then sent off this lot of forms, received a letter from the service thanking us for the forms, and asking us to call to make an appointment for the assessment, which was the appointment I had at the end of November.
And, as I’ve recounted in the three blog posts from Too Articulate onwards, things started to go wrong.
The result of the meeting between the two psychologists was that they decided that neither of them was able to diagnose me. I was, indeed, too complicated for both of them and fell beyond their remit. All that bringing in a second psychologist had done was to clarify the need for a psychiatrist.
So the first psychologist called my husband to cancel the appointment.
And, it seems, there is even more to it than just a problem at the hospital. I am only reporting the best we can gather here, and I still don’t know whether we’re getting the full story, but this is the best I have at the moment. The psychologist said that I should never have been referred to that hospital because they don’t deal with autistics with mental health conditions. She also said that the psychiatrist who is off sick is actually from the next county and is not supposed to deal with mentally ill autistics in our county anyway because of something to do with PCT (Primary Care Trust) issues (this is into NHS admin realms that are currently beyond my knowledge, but might become within my knowledge rather soon if this situation continues), but that he would deal with me when he returns to work because I’m already in their system.
This, of course, presupposes that he ever does return to work – I know the pattern of being signed off sick for a month and then another month and so on, and I know that the end of that pattern is not always a return to work… This was one of the patterns that triggered my husband getting one of his “feelings” yesterday morning and prompted him to call the hospital…
So, it is now not clear that there wasn’t some sort of cock up by the triage service, who should, maybe, never have referred me to the hospital in the first place. They knew about my mental health history (I have copies of the documents I sent them) but, seemingly, referred me to a place where I then encountered a psychologist who was totally out of her depth. My husband got the impression that she had never encountered anyone like me, and we now wonder whether it’s the first time she’s actually witnessed an adult having a violent meltdown. Her lack of knowledge about autistics and clocks certainly indicates that her knowledge about autism has some significant limitations.
We’re not totally sure that we’re still getting the full story and not some sort of “back covering” version. The assertion that the assessment was stopped as soon as I exhibited signs of distress is distinctly inaccurate, since the whole frog book thing happened after the meltdown, and if it’s about duty of care then just abandoning us at the end doesn’t really fit. We were also assured that there would be a psychiatrist available for the second appointment and it seems that assurance was made without any actual ability to back it up. My husband explained that when communicating with autistics what we really want isn’t some sort of “second guessing maybe possibly” stuff, but genuine assurance that there would be a psychiatrist available. Otherwise all we are perceiving is a tissue of lies. He did, I’m told, receive an apology, and it seems that there have been lessons learnt about how to communicate with autistic people, and that holes in the countywide adult autism service have been uncovered.
Although this is a horribly difficult experience for us, we do have a couple of things going for us. First, and most importantly, there are two of us. Had I been on my own, the mess at the end of November might well have cost me my life, and I’ve read news reports that suggest autistic people have taken their own lives as a result of this sort of thing. I didn’t, because I have a husband who is an exceptionally good carer – that is only a matter of luck.
Secondly, the very intelligence that has tormented us over the years and raised expectations and so on, is actually very very useful in these situations. We have both studied at postgraduate level and have research backgrounds, so we can put in the work to find out what we are supposed to do. We are not intimidated by people who call themselves doctor or professor or whatever (in fact, we don’t even notice) because many of our friends do, and we’ve both worked in public sector admin roles so we know quite a lot about the system and we know its shortcomings. We will get through this by treating it as a project, a goal. That, at the moment, is what is keeping us going – although our mental health problems kept us both from succeeding in the academic world as we would have wished, we are still both, at core, researchers and teachers and are driven by an insatiable desire for information and clarity.
If, as a result of our experiences and our actions, someone else, in the future, who doesn’t have a husband and an obsession with research and so on but does have the same complex mental health issues that I do, doesn’t fall through the cracks in the system as I have done because we have found those cracks and made people close them, then it might just save their life. And that alone makes the fighting worth it. We can but hope.
As far as our next move is concerned, we now have to wait to see whether the psychiatrist from the hospital returns to work (which will be at least another month) or whether they manage to find someone else who can do the job. In the meantime, my assessment process has stalled there and there is nothing to do but wait. I have to force myself to get on with life while the autism diagnosis tab in my brain is still open.
We will also get in touch with the triage service (who, it seems, might also be hearing from the hospital regarding future referrals), but the contact person there only works part time and is still on Christmas holidays, so we’ll have to wait for that too. We will then ask them what possibilities there are for the other two centres on the list and see what we can work out from there.
For the time being there is nothing else we can do, except continue to document as much as we can and keep investigating all the possibilities. But they are for a future time and a future blog post because this one is already much too long!