First of all, I'm angry, sweary and suicidal. If harsh language is going to bother you, then sod off. If you're made of tougher stuff, then any opinions will be gratefully received.
I'm female and in my 40's. I have lived with depression for most of my life, and have given up trying to find a treatment that I can tolerate. I have diagnosed ADHD. I have always suspected that I am missing at least one additional diagnosis. I honestly have no idea if I am autistic or not. In some ways, it makes so much sense I cannot see how I am not autistic. In other ways, who the Hell knows? I read Aspergirls, and most of it felt so familiar that it was as though someone had written a user manual for how to deal with me. (There were one or two things that didn't ring true as well, to be fair). I first mentioned my suspicions to a psychiatrist I was seeing - this was about six years ago. She was really dismissive. I didn't mention it again. About a year later, I saw a psychopharmacologist. I asked him if he thought there was any chance I was autistic. He didn't even answer me.
Fast forward a few years, and certain aspects of my behaviour were really causing issues. I asked him again, and he sent me an autism "questionnaire". It was only about ten questions, but I managed to query the validity of many of the questions. (I don't have the form in front of me, but one of them was something about identifying with characters when you're reading. I don't read fiction, so I didn't really know how to answer it).
He then sent me a different, more detailed (Excel-based) questionnaire. Again, I do not have it in front of me. I think it was designed by a Cambridge-based research group, and was (IIRC) 50 general questions, and then 50 questions that were more based around "emotional intelligence". Off hand, I don't recall my score for the first section, but it was well in to "you may be autistic" territory. On the emotional intelligence section, I remember that I scored 11/50 :-( (In my defence, in the first section, you could use half numbers if you were not sure about something. For some reason, the second part only allowed you to use full integers. Before being forced off the fence, my score would have been 15/50. I'm aware that 30 % still constitutes a fail.)
(I should point out that the thing that scared me the most about this, wasn't that I scored 11/50 in the "emotional intelligence" section. It was that, despite this, I still seem to have more empathy than many people who are employed within the NHS).
The psychopharmacologist wrote a letter to my GP, suggesting that I be assessed for autism.
On the upside, I didn't have to wait too long to be seen. The bloke who was performing the assessment seemed nice. Possibly a little too nice. Not in a creepy or inappropriate way I should add. Just very sympathetic, and a part of me doesn't know what to do with that. I generally think I'm used to people hating me, but he was fairly good-looking and seemed kind. I know how lame and stupid this sounds, but I wanted him to like me. It made it more difficult to tell him things that would:
- possibly support an ASD diagnosis, but also
- make me look like a twat.
We had two diagnostic sessions, one in August, and one in September. I was supposed to see him in October, but I couldn't find anywhere to park at the centre where the assessment was being conducted. I finished up getting really stressed out and having a complete meltdown. The third appointment was re-arranged, but the psychologist had to cancel. Despite me telling them not to bother, they re-arranged another appointment for January. At the beginning of this session, the psychologist told me that he didn't believe that I was autistic, but he felt that it was important to have the third session, so that I didn't take the outcome "as a rejection". I was taken aback, and told him there were things that I was finding it difficult to tell him. He didn't make any effort to allow me to share these things, and it was clear that he had completely made up his mind. He said that he felt that my issues could be explained by trauma (something he didn't bother to put on the subsequent letter to my GP).
I have since pointed out that I felt that the unnecessary third appointment was unhelpful; he could have told me the outcome on the phone. In October. Since the diagnostic process had begun, I had moved to a different district. I had been under the impression that if I registered with a local GP, I would have to start the diagnostic procedure from scratch in my new location. They are now claiming that is not the case. But
- I don't think the psychologist realises the damage that he has caused by lying. The third appointment was not diagnostic. That he has lied about this has really re-enforced my opinion that healthcare workers cannot be trusted. I cannot understand why he will not tell the truth about this, regardless of the effect that this has had on his patient.
- this left several months were I could not get the support that I needed.
- At the unnecessary third appointment, I was suicidal. The psychologist made one half-arsed attempt to enquire about my safety. That was it.
- It also meant that I had to drive over an hour from where I was living, when I was in such a state that I probably shouldn't have actually been on the road.
Questions. If you can answer any of these, it would be appreciated. Also, if you think that I'm asking the wrong questions, I am open to a discussion about it.
1) I'm female, in my 40's, and I hold a PhD. Is using a childrens' book to diagnose me considered appropriate? The psychologist asked me if I could find a narrative in this shitty, text-free, creepy AF book about flying frogs:
https://www.amazon.com/Tuesday-David-Wiesner/dp/0395870828
I could. Therefore, I cannot be autistic.
2) I can string a sentence together. Apparently my social skills are too good for me to be autistic. I queried this, and was told that they are confident that they can identify "masking" in female patients. I seriously doubt that this is the case. However, they also didn't offer up any evidence of exactly how they feel they could do this. Does anyone else have any experience of this?
3) The psychologist seemed unable to distinguish between contradictory features of ADHD and ASD. Is this a common issue? Can you have ASD and ADHD? (The kind of things I mean, is that I do like to learn new things. I made the point to him that I can enjoy exploring new places - I gave the example of Glastonbury Festival. It helps that I can walk around all day with a bottle of vodka in my hand, and I need to "retire" to my tent two or three times during the day to "decompress", and get away from the hoards of people).
4) I asked whether there was an inherent gender bias in their diagnostic approach (one psychologist, not a multidisciplinary team). They gave me several non-answers. Do you know if a single-psychologist approach is less likely to diagnose women with autism.
5) If my GP - who has got to know me better than he would probably like - had misgivings about the non-diagnosis, would he have offered to send me for a second opinion? Or would that be unprofessional of him (i.e. for him to suggest it)?
6) I have been lied to, and lied about by other healthcare "professionals". I cannot now imagine doing the whole sitting-down-and-getting-to-know-you-*** with another psychologist or psychiatrist. This basically means that I am as good as dead. My GP won't prescribe the only drug that kept me semi-functional; I cannot see my previous psychopharmacologist; and I can't sit down with someone new, as I cannot trust them. Any suggestions?
(It doesn't help that my former psychopharmacologist sought help for his own mental health problems in a different country, stating that his psychiatry colleagues were morons).
Most recently, I have been lied to and screwed around by the staff at Southmead Hospital in Bristol. The managers there told me to get my GP to refer me back to see my psychopharmacologist. After being messed around for months, having my complaint closed without resolution or notice, I finally lost my temper with one of the complaints managers and finished up actually shouting "how dare you?" at her. This is going to be my fault for daring to shout at the idiot woman.
As an aside - and I have no way of knowing if this is true - I heard an interesting story. Many years ago, I used to work at a university. I also used to smoke, so would get chatting to the same members of staff as we stood outside the building, puffing away. One of the academic members of staff told me that he had been sent to see an anger management-type counsellor. I didn't ask exactly what he had said or done, and he didn't tell me. He told me that the counsellor had told him that, probably in four out of five cases, they are sending him the wrong person. This would not surprise me. Anger is a perfectly natural human reaction when you are dealing with utter morons. How the *** are you supposed to keep your cool when you are dealing with people who are:
- thick as ***
- incompetent
- lying
- unhelpful
- completely unaware that they are thick, incompetent and unhelpful, and
- entirely unrepentant about being liars.
Seriously???
