A busy few months

A long time since the last post and a lot has happened.

I ended up being seen by another psychologist who arrived at the same conclusions but produced a report that was much more accurate and more suitable for giving to DWP and other agencies as a summary of my support needs. She also put me in touch with a local autism support group and referred me to a social skills course.

The autism support group is going well. It is a very diverse group. Some people who attend are more obviously on the spectrum than others. Not as many people into science and technology as I expected. The gender balance is 75% male and 25% female which fits with the gender balance at diagnosis. I found it a lot more difficult to start talking than I had expected, but luckily there were people there who had strong enough social skills to get me to open up.

The social skills course seems to be very much a “one size fits all” thing. A lot of it seemed to be about things that I thought I was already pretty good at, but I suppose at nearly 40 years old it would be odd if my social skills hadn’t improved at all in the last 20 years. Nevertheless some of it left me with a feeling of “Well I never knew it was OK to do that”, so it’s useful. There was much talk there about the forthcoming Integrated Autism Service and the facilitators asked us about what we thought we needed from the IAS. Hopefully it’s a sign that the new service recognises that we are a very diverse bunch of people and that what helps some of us may not be helpful to the rest of us.

In the last month I found out that I have made it onto the waiting list for supported housing in another county. The waiting list is short so the wait should be months rather than years. Hopefully moving away from this town will help reduce the flashbacks from my relationship with my ex. It should also make it easier to rebuild my life without constantly encountering my ex’s flying monkeys. (Flying monkeys can be anyone who believes a narcissist’s fake persona including the narcissist’s spouse, child, friend, sister, brother or cousin. Flying monkeys are usually unwittingly manipulated people who believe the smears about the narcissist’s victim although they may be another narcissist working in tandem. They differ from enablers in that enablers only permit or cover for a narcissist’s behaviour. Flying monkeys go further and actively carry out abuse on behalf of the narcissist.)

My drinking is now reduced to the amounts I was drinking before I met my ex so I’ve been discharged by the Drug and Alcohol Team with a letter to my doctor asking him to continue my Nalmefene. Still waiting for the mental health assessment after being referred over 2 years ago, but you can’t have everything.

Advertisements

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.

Mind the gap!

It pays to complain it seems. Last Friday I had a phone call to (hastily) arrange an appointment with the Head of Adult Psychology who turned out to have a familiar name. Dr D used to work at the Local Mental Health Unit as a psychologist/psychotherapist so I had heard a lot of good things about him from service users. He has a very professional manner and a lot of expertise in personality psychology and personality disorders. I have a lot of faith in him. I was given an AQ and EQ questionnaire to fill in, but they weren’t needed as they had found Mr S’ notes. This meant that Dr D concentrated on gathering more of my history.

On Monday he saw my mother and me together and today he saw us separately. I noticed that the questions he asked were more like a general mental health assessment than necessarily specific to autism, but given that I have a history of being abused that seems sensible. He also asked about my alcohol consumption and if I was getting help to reduce. I said that I was getting help and that I was happy for him to link up with my key-worker at the substance misuse team, mainly because I think a lot of my difficulties have been down to various parts of the health service treating different conditions without communicating with each other. Until recently nobody has co-ordinated my care. Ultimately I don’t particularly care any more what the diagnosis turns out to be so long as it is accurate and I get the right support and treatment. I am tempted to second guess the diagnosis though! I think of it as a sequence of layers – autism at the bottom causing generalised anxiety disorder in the middle, coupled with PTSD from the abuse (also in the middle) with substance misuse disorder on the top caused by years of self-medicating against the anxiety and memories of the abuse. It’ll mean a lot of time in therapy, but I’ve been trying to get therapy for a long time anyway so it would be an answer to my prayers.

The mental health system in the UK is very much a two-tier system. If you have ‘mild’ mental health issues you get treated in primary care which usually means 6 hours of CBT or counselling and a repeat prescription of antidepressants. Every so often the doctor changes the antidepressant if you don’t improve. If you’re lucky you might get another 6 hours of counselling. Rinse and repeat. If on the other hand you have what is classed as severe mental health issues you get treated in secondary care. You get classified as having severe mental health issues if you have a personality disorder or symptoms of psychosis. The trouble is that there are people who fall in between these two classifications with moderate mental health issues. They used to get treatment in secondary care, but since the hospitals closed secondary care has had to treat more people without a bigger budget. Secondary care understandably prioritised people with the most severe conditions which meant that those of us in the middle ended up receiving inadequate care in the primary care system. I’ve been falling through this gap for a very long time. “Mind the Gap“, an article from The Psychologist offers a very interesting solution to this problem.

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.

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.

Is a barking dog sending you barking?

I have a neighbour that probably shouldn’t have a dog. During the day the dog is shut inside while they are out. When they are indoors during the day they mostly shut it outside. It doesn’t get walked and doesn’t get much attention. It must be bored out of skull and so it barks – a lot. When it barks outside I don’t hear it at all in my room. When it’s inside it echos throughout next door and into my room. To make matters worse, when it barks it throws its metal bowl around making it sound like somebody next door is playing the cymbals – very badly. Yesterday it barked for 13 hours in bursts of 20 minutes once or twice an hour except for 4 quiet hours in the middle. Banging on the wall sometimes quiets it. One time though the neighbour happened to be in and banged back 🙂

So what to do? No point asking the neighbour to train her dog to bark less often or find a way to quiet it because she clearly doesn’t care enough to even bother walking the dog. Also the neighbour is a rather belligerent, inconsiderate and entitled character (NPD?) – a polite request to turn her stereo down slightly is usually met with “I can play my music as loud as I like in my own house” followed by a torrent of aggression and verbal abuse. Thankfully she has matured a bit and has largely stopped the loud music. Being unhinged seems to run in her family – her brother has a long criminal record and now commits crimes just to get back into either prison or the mental hospital because he can’t deal with life on the outside.

Reporting noise nuisance to the local authorities is bureaucratic, time-consuming and usually pointless. If she got reported for noise nuisance she’d know about it and make the neighbours’ lives a misery. The same would go for her being reported to the local humane society for neglect.

Which leaves possible solutions that I can use on my side of the fence. BarkingDogs.net has a really useful page full of tips on how to shield your home from the noise of your neighbour’s barking dogs. As I’m typing the cymbals have started for the day which means the barking is imminent and so up go my anxiety levels. Long term I hope to move somewhere quieter, but that can’t happen until I’m diagnosed and put on the waiting list to be rehoused (Delays and more delays). In the meantime, I’m looking into how I could use my computer as a white noise machine. My 32dB earplugs are on the way and I can’t wait! They should help with the other noise from next door (slamming doors and shouting) and the noise from the street (kids playing and car horns) too. Peace! Hopefully…

Delays and more delays

Well today was meant to have been my first autism assessment appointment, but they cancelled at the last minute – again. The last cancellation was because they sent me the wrong appointment dates. This time it’s because the Advanced Practice Nurse at the Autism Service is sick without anybody to cover for him. The last time this happened the waiting list was delayed for 3 months and I got knocked off the waiting list because they mislaid my file.

The annoying thing is that as far as my family, support worker, the Advanced Practice Nurse at the Autism Service and the Psychiatrist who made the referral are concerned the result is a foregone conclusion, but I have to be formally diagnosed to access the support I need to live independently. I can’t access any talking therapies for my mental health issues until we have the result. Basically the only treatment I can have is antidepressants, but I’ve yet to find an antidepressant that actually does anything more than keep me from killing myself. I’m stuck on welfare and I’m lucky if I can handle a 2 mile bus journey most days. I want to get better – this isn’t a life, it’s an existence. My life is on hold. 16 months from referral and still waiting.

Rant over.

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…

Strategic v Detail Thinkers and Trees

Since I’m due to be assessed for Autism shortly I’ve been obsessing a fair bit about how different people think and make decisions.

I’ve known people who are gifted at thinking strategically/creatively (and I envy them), but very slow to get to the details. Myself, I’m detail oriented – I get deep down into the details of an option and work in the details and then work back to the level of the original options and head for the details in the next of the original options which makes me very poor at making strategic decisions quickly. In short – I’m good at computer programming but dreadful at chess.

Why the difference? That’s where trees come in. Decision making can be represented by a kind of tree. Each decision is a fork in the tree. The trunk is where we start considering the main options. The details are where the leaves are. A common problem given in computer science (where data is often stored in tree-like logical structures) is to find a way of exploring as much of the tree as possible in a given amount of time. The answer depends very heavily on how branched the tree is, how many alternative paths can be explored at the same time, and whether we want more detail at the expense of fewer options.

A detail thinker may be only capable of exploring as little as one path through the tree in one go. They think very linearly most of the time and so are very efficient at it. They get to the detail of a given option more quickly than the strategic thinker, but they have to backtrack repeatedly to explore all the ramifications of the given option before eventually returning to the trunk and doing the same thing again for all the other branches off the trunk. You’ll get the detail on a particular option very quickly, but if you want a quick overview of all the options, go elsewhere.

A strategic thinker is capable of thinking laterally along several different alternative paths at the same time, which means they can explore more options at a broad, strategic level up without backtracking until they get so far into the details of the individual options that they exhaust their multitasking ability and have to resort to the more linear thinking style of the detail thinker to get any further. Being less practised in that thinking style compared to the detail thinker, they lose their edge to the detail thinker.

I’ve worked with and lived with strategic thinkers. Sometimes the clash between our thinking styles led to mutual frustration. The last thing a strategic thinker wants is a dissertation on the details of the option they were least likely to pursue. The last thing a detail thinker wants is to find that they have been on a wild goose chase analysing an option that the strategic thinker didn’t really favour in the first place. Communication is the key there, I suppose.

With good communication the differences can be complementary. Let the strategic thinker have pick out the bright ideas and let the detail thinker analyse them. There’ll still sometimes be frustrations – the strategic thinker will feel like the detail thinker is ‘always putting the brakes on’; conversely the detail thinker will often feel like the strategic thinker’s ideas are ‘half-baked.’ More positively, the detail thinker can often save a strategic thinker from making a costly mistake because unfortunately the devil is often in the detail. Likewise the strategic thinker can save a detail thinker from wasting time and money on projects that won’t get anywhere in the long run.

From this detail thinker to all the strategic thinkers I’ve ever known – “we’ve frustrated the heck out of each other, but we need each other. Vive la difference!