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 I did however get interviewed by the national TV news after I was withdrawn from the school and I named the school and the abuse that took place.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.

Drink and Drugs

I’ve been drinking too much for a long time. It’s mainly been self-medication. It was at its worst around the end of my last relationship which had been increasingly turbulent with time. With hindsight, my ex’s escalating BPD and my autism and escalating drinking was a recipe for disaster. Counselling with a peer mentor got me down from 35-40 units a day in the months after the separation to between 8 and 22 units a day depending on anxiety levels with the occasional day off. However it was a struggle to cut back any further so I’m now trying an anti-craving drug. The liver function test which I didn’t know I had to have was a wake-up call. Luckily the result was not too serious – some inflammation, but reversible if I cut down or stop. I now have to have blood tests every few months – not good as I can’t stand needles, but at least it’ll keep me motivated. The doctor is trying me on Nalmefene first but for some reason none of the pharmacies in town stock it and only one will order it in. Very odd. I’ll start on the Nalmefene on Thursday and see how it goes.

Autism and Empathy

Well, the Autism pre-assessment has happened. Mr S (Advanced Practice Nurse) took down some of my history and symptoms and then talked about the assessment procedure with my mother and me. Thankfully the Crisis Team Psychiatrist who referred me had taken a very comprehensive history and symptoms, so there wasn’t much more history that needed to be taken down. At various points in the history where I had been in contact with child psychiatry, educational psychology or mental health services, he asked if Autism had ever been mentioned. “No” each time. He seemed increasingly bemused, as if they had repeatedly missed the blatantly obvious. Things that never used to make sense about my childhood now make sense. I had a feeling that I was backward compared to my own age group in communication, manual dexterity, co-ordination and social skills. My grades in English, Art, Music and PE bore that out. It turns out that the Ed Psychs’ reports reinforced that. I was ahead of my age academically in the other subjects. My IQ was above average academically, but in all other areas I was effectively learning-disabled. No wonder there were disagreements over admitting me to secondary school early. The average 11 year old finds the transition to a much bigger school daunting, so I can see why the local state secondary school would have been reluctant to admit a socially backward 9 year old. Hence why I was eventually sent to a small all-age private school for a while to smooth the transition. It seems that the Ed Psychs weren’t too worried about my social backwardness – they figured that I was intelligent enough to compensate for it or even catch up eventually. Clearly that hadn’t happened otherwise I wouldn’t be seeing Mr S or, indeed, posting this monologue.

The assessment process involves three questionnaires, one of which relates mainly to behaviour between ages 4 and 11 and so is to be completed by the parents. The questionnaires are completed over the course of 3 weekly appointments. They are a lot like questionnaires available online, but examples have to be given to support the answers to each question. Once completed, the questionnaires together with case notes are given to a panel who determine whether the client is or isn’t on the Autism spectrum. A more detailed diagnosis as to position on the spectrum would usually not be done on the NHS, but that shouldn’t be a problem as DSM-V only talks about ASD rather than breaking it down further into Asperger’s, HFA and so on. The diagnosis of ASD and accompanying medical evidence should be enough to prove care and support needs.

One questionnaire has 50 questions which scores specifically for Autism spectrum traits. I recognised it instantly as being one that I have done before online a few times and scored consistently in the high 40s. The name of the questionnaire escapes me.

The other questionnaire is an Empathy Quotient questionnaire of 60 questions. It was much harder for me to figure out what they were trying to assess. I’m aware of the fact that my empathy is stunted in areas that NTs have no problem with. And from my reading about Autism vs Narcissistic Spectrum Personality Disorders, Autism usually involves deficiencies in different sorts of empathy to the deficiencies experienced by Narcissists. According to this article, the EQ doesn’t pick out which areas are deficient, it simply calculates an overall score. The lower the score the higher the probability of ASD / Narcissistic Spectrum PD.

I think we can easily rule out Narcissism Spectrum. Narcissists know when they’re hurting people or manipulating them and don’t feel much remorse if any. When I know I’ve hurt people I always feel remorse. Usually I don’t realise until somebody tells me that I’ve hurt their feelings and what it was that I said or did. Usually I’m surprised that they are upset about it (usually it’s something that wouldn’t bother me if they did it to me), but I’m still remorseful for the upset caused. I usually then remember it as something that NTs get bothered by and try not to do it again. It’s a bit like living in a foreign culture (e.g. sniffing is ruder than blowing your nose in the UK, but in Japan blowing your nose is ruder than sniffing because the loud noise draws attention to you)

All in all, the process seems very forensic and thorough. A lot like what I’ve read about the process of diagnosing personality disorders. Perhaps not surprising given that both diagnoses involve assessing pervasive impairments in social functioning across most of the client’s lifetime. Indeed, Autism was originally classified as a type of personality disorder, but was reclassified when it became clear that autistic behaviours appear much earlier on in child development than behaviours typical of personality disorders. Advances in neurology have also made it clear that autism is invariably linked to neurological variations and that nurture rarely has much effect on the outcome. PDs on the other hand either have no neurological underpinning (only early psychological trauma), or neurological differences give a propensity for a PD which is then sometimes (but not always) triggered by early psychological trauma. This is why PDs show up later in child development than autism.

If Mr S’ instincts are right, then I am indeed Autistic, something I’ve suspected for over a decade. Odd how I’m only now starting to see the down sides of the diagnosis, though. I guess I always used to be able to say to myself that I could well have been wrong about my suspicions, but wanted to be right. Now it seems that I could well have been right, but I’m not sure I will be glad about it. When my problems seemed to be anxiety, depression and being a bit of a klutz, there was always a sense that I would completely recover eventually. Now it’s looking like a long hard slog to learn enough social and emotional skills to try and get by in a world that I’ll never truly easily understand and will always scare the cr*p out of me. Daunting…