Diagnosis : ASD

I have finally had the draft report back from the psychologist. All diagnostic criteria for ASD met. AQ 44/50 and EQ 19/80. The psychologist is “reasonably certain” that I’m autistic. The report is, however, riddled with inaccuracies about traumatic events in my life history. The inaccuracies would not affect the diagnosis, but would be defamatory if they were made public in any way, so I have to be careful how I word the next few sentences. Basically the psychologist interviewed only my mother and me about my life history. He claimed that I had been nearly killed several times as a child. That much was true, but he claimed that one of us had said that it was a relative who did it. It wasn’t a relative and both of us said categorically that it was pupils at a well-known British boarding school that did it. I will not name the school to protect my anonymity. I have no fear of the school suing me for defamation, as the events I describe did actually take place. He also claimed that I had been sexually assaulted multiple times. Again not true – two boys at the same boarding school attempted to rape me once and that is all. The staff at the school were informed of all these incidents and they did absolutely nothing, preferring to denounce me as a liar and sweep it all under the carpet. I did however get interviewed by the national TV news after I was withdrawn from the school and I named the school and the abuse that took place. The school, tellingly, made no comment and took no action. Anyhow, the draft report has been returned to the psychologist with our corrections. The psychologist appears to be dragging his feet over issuing the final report and seeing me for a follow-up appointment. The psychologist had intended to be my main contact for my autism and mental health issues, but given that he seems to have been unable to record accurately what he has been told, I would rather be seen by somebody else – either that or I’ll have to take a voice recorder in to each appointment. I’m left wondering if there is anybody in our local mental health service who can do their job without making a complete hash of it.

Meanwhile the complaint procedure continues to run its course with the complaint about the delays and errors in the assessment process now having been escalated to the Head of Mental Health Nursing who seems to be frantically trying to pin the blame on Mr S (the APN who started the autism assessment) for the whole debacle. This is convenient for them as Mr S now works for another Health Authority and so is not in a position to defend himself.

On the plus side, the draft report is helping me to describe my support needs and access support. It was recommended that the effects of my current housing situation on my mental health should be investigated and sorted out. If you are a regular reader you may already know that I have ongoing problems with noise from a neighbour, made worse by the fact that I have hyperacusis (over-sensitivity to sudden noises and background noise). I have seen a support worker from a mental health housing charity, armed with my draft report. They have said that they will help me find somewhere to live and support me in living as independently as possible, whether it’s in one of their own properties or a private or social tenancy. I’m very grateful to my relative for giving me sanctuary for so long, but I’ve always struggled for space here and struggled with the noise. I need to learn to be as independent as possible. And now it’s going to happen.

The second recommendation was for a referral for a full mental health assessment by the Community Mental Health Team (CMHT). The CMHT is the secondary mental health care system that I described in my article “Mind The Gap!” Because I hadn’t told anybody in the mental health system about the abuse that I had endured at various times in my life (including my last relationship) until the psychologist interviewed me I have a hunch that he suspects that I may have some form of PTSD. I suspect so too. In the last two years especially I have had some symptoms that are more typical of PTSD than autism. When my relatives helped me move out from my partner’s home they described me as resembling somebody who had come back from a battlefield – withdrawn, easily alarmed, short-tempered, alert, staring constantly into the distance. I have difficulty getting asleep and staying asleep. I have intrusive memories of the abuse that gets triggered by things like the neighbours arguing or even going to the nearest supermarket where she had verbally abused me while I was having a panic attack. My brain replays the abuse every day, several times a day. It does seem to happen less often as time goes on, though. I drank like a fish to escape the worst of my ex’s rages, to take the edge off the anxiety and to get to sleep and stay asleep even when my ex had started using sleep deprivation tactics on me. I used to be afraid of falling asleep because I never knew whether I would be allowed to sleep or if she would wake me up after about two hours screaming wild accusations at me like a deranged Sergeant Major. Of course, once I was awake enough to be able to understand what she had to say and ask her what had upset her she gave me the silent treatment, making sure that I was left completely terrified and disoriented. Weird how the law works in this country. If somebody in the military or the police does that to a captive then it is treated as torture – a criminal offence. But until just under two years ago it was not a criminal offence in a domestic abuse context. That said, marital rape was legal in this country until 1991. It seems that the UK has a terrible track record for tolerating atrocities as long as they are committed in private.

After the breakup I continued to self-medicate, but I’m slowly cutting down. I have to say that the local substance misuse charity and the health service’s drug and alcohol team have been far more helpful in the last two years than the mental health service. No waiting lists, no errors and they have helped me with my mental health issues by referring me for counselling when the mental health service did absolutely sod all. I’ve had my first session of the current six session block of counselling and I went armed with the draft report. This counsellor has 8 years of experience as a counsellor which is a refreshing change as I usually end up with students. She also has many more years of experience in mental health. She totally understands how autistic people think and also how people with BPD like my ex think. She was able to confirm a lot of things that I had been told in the support groups for partners of people who have BPD. Relationships between people who have BPD and people who are autistic are very common. There’s enough of an overlap in personality traits for attraction to occur. Autistic people are less likely to challenge the difficult behaviours of people with BPD which adds to the attraction. However when the relationship matures the differences in personality become problematic. The autistic partner’s need for lots of alone time triggers the borderline’s fear of abandonment causing the borderline to test their partner’s boundaries. The borderline may act out, sometimes abusively. The autistic partner is confused and infuriated by their partner’s behaviour which leads to the autistic partner becoming more distant and seeking solace in routine. The borderline partner is infuriated by their partner’s apparent rigidity, stubbornness and coldness. In other words, my last relationship was a train-wreck waiting to happen. Neither of us could help how we were, but we made each other worse and even knowing what we know now about each other we would still be very bad for each other. It’s a case of the 3C’s – “I didn’t cause my partner’s condition. I can’t cure my partner. I can’t control my partner.”

So lots happening all of a sudden. Whew. That was a long post. 2.5 hours to write when I had only intended to take half an hour. It’s now very late in the night and I have to be up at dawn so I should stop now. If you haven’t been bored rigid by now then thanks for reading.

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The waiting list that never ends

So near and yet so far. After all the delays in getting assessed for autism we were finally starting to make some progress. AQ and EQ questionnaires all done. The next few assessment appointments were meant to be about tying up loose ends, but the assessor has gone on unplanned leave yet again just before he transfers to another job, so it’s unlikely that he will clear up his caseload. Which means I will have to be completely reassessed by whoever takes over from him when they manage to fill the vacancy. 20 months since referral and still waiting. 20 months of blunders from the local autism service. The team leader that we spoke to is strongly encouraging us to make a formal complaint. We are far from being the only people who have been messed about by them it seems. He seems as frustrated with the situation as we are, but needs complaints in writing in order to get across to his bosses that the service is failing and desperately needs resources. Well, a written complaint will be on the way. This time I have had enough.