Published on 12, July, 2020
Hello. It's a bit tricky for me to write at the moment. I'm trying to get thoughts and feelings in order, but it feels daunting. Not a huge amount has changed for me since I was last on these forums nearly a year ago, but what's prompting me to ask for thoughts is as follows.
I have been paying for a (neurotypical) 'mentor' who among other things thinks I should seek an assessment for ADHD on top of my autism diagnosis. I wasn't particularly convinced it would be useful, but went via my GP & almost accidentally did the IAPT (primary care psychology) screening.
It was quite difficult to explain to the IAPT assessor on the phone what I wanted, and I had a lot of problems with their standard questions. I have a problem with paperwork and forms anyway, but their 'PHQ-9' measure to screen for depression was difficult because it requires an amount of self-monitoring that doesn't come easily to me, and it gives choices such as 'not at all' and 'on a few days' without 'on one day'. I do however realise I am very prone to depression and I've been more or less depressed for over half my life. Since my diagnosis three years ago though, while I've still been depressed almost as much, I've been thinking more about being autistic.
So the assessor mentioned 'behavioural activation' as possibly helpful to me, and I ended up with six sessions of standard CBT, of which I've had three. I identify strongly with 'alexithymia', which I define as not knowing what I feel. In some ways, knowing it applies to me and other autistic people a lot, it feels like something I can use to separate myself from depression. I still get affected by other people's emotions.
I did warn the current psychologist/therapist about autism and alexithymia, and apparently they don't have any CBT adapted for autism (I know it exists). I still get a standard 7-column sheet ('Situation/trigger', 'Feeiings/emotions', 'Unhelpful thought', 'Evidence for unhelpful thought', 'Evidence against unhelpful thought', 'alternative, more realistic and balanced perspective', 'outcome'). I explained that I have coping strategies to avoid depression, including distraction from negative thoughts (also acceptance, compassionate responses, broadening perspective, and activity), and just because I'm still depressed doesn't mean they're not working. The therapist slightly misinterpreted my desire to 'avoid' being depressed and said I need to face up to the thoughts and challenge them rather than avoiding them. Of course long-term I want to avoid being depressed as much as I can.
So it was perhaps surprisingly easy to drop the coping strategies. Predictably, I'm now much more obviously depressed than I was a couple of weeks ago, and I have accumulated a few 'unhelpful thoughts'. Those thoughts may be associated with the depression, but I'm not sure they cause it. So this may be the low point before I start challenging them. So far trying to assess them has either confirmed them, found it difficult to say anything one way or another, or replaced them with a more compassionate response but not had any effect on mood. (My last therapy was over two years ago and was group psychodynamic, and it was one of the most frustrating experiences of my life. I pretty much ended up despising the therapist for wasting everybody's time, particularly mine. I feel like I should warn people about psychodyamic stuff, but have generally supported CBT up to a point.)
I realise it's possible that my strategies for coping with depression have deepened the alexithymia. I had suspect that among other things these can mean that I don't face up to longer-term tasks, like developing a career. There probably are healthier alternative tactics.
I'm even more tired and useless at the moment. It seems to be up to me to research adapted CBT, but I haven't been able to do so. Any thoughts?
Hi. Long time no see. Glad to hear from you again. I think I can understand what you are saying with CBT. I've tried counselling a couple of times, but usually just left after a couple of sessions because I didn't find it helpful. Sometimes counselling can even make me feel worse, because the person doesn't seem to understand what I'm talking about, and it just feel very frustrating to be misunderstood and you have to spend a lot of effort to explain to them what I mean. But I not all counsellors/psychologists are like that. I think it helps tremendously to talk to someone who understands autism. I've had good experiences talking to people who can understand me. By the way, have you read this post here? I think it's an awesome summary comparing ASD CBT and regular CBT:https://community.autism.org.uk/f/health-and-wellbeing/13494/that-s-the-kind-of-cbt-for-me
Thanks, qwerty, and also for the link to @Trogluddite's excellent post about the importance of adapted therapy and its lack of ability. I can relate to both you and Trogluddite.
My original post rambled with too much detail. I wish I had more energy to put into writing better. I find it really hard to put my problems or needs into words.
Since posting that, because of staff changes, I've actually seen 3 CBT therapists at the same place, each with their own style. The first was vague, asked for my therapy goals and turned out quickly to not respond to them; the second had a brisk, positive attitude and claimed to know something about autism but I never found out if this was true; and the third and current acknowledges the autism diagnosis but is open about going on the basis of what he sees, ignoring 'labels'. That may be the best you can expect from conventional CBT.
I only have one more session with him, in a couple of weeks. I suppose it may have helped slightly to actually go through the CBT exercises even if I know the principles and they take up time and energy that I'm short of. It helps more to get a little extra encouragement in person, but none of it's really relevant to my main troubles (eg inertia). He decided to start with 'behavioural activation', but really it was more about trying to measure mood as a result of events in the week. Seeing little ups and downs is something I'm bad at, so it could be good to practice. Better that than starting with a dogmatic insistence on recording and attempting to 'challenge' negative thoughts. While I do make negative judgements about self, world and future, these aren't factually incorrect 'thinking errors' and are rather evaluations according to my set of values.
So I can still see why CBT might be helpful to people in general, but it risks messing up my particular way of constructing a positive world-view. One handout is about realising how happiness and well-being is divided into three: closeness to others, achievement and enjoyment. I think that's pretty accurate, but being autistic in a neurotypical world makes all three difficult: closeness because of sensitivity and difficulty negotiating the more difficult relationships; achievement because of inertia or executive function problems which are aggravated by trying to do stuff by myself; enjoyment because I'm usually not in the here and now and if I am enjoying something, I probably don't even realise it.
So the behavioural things I wanted help with are pretty much invisible in a consulting room, and not really dealt with by conventional CBT. It's not just a case of being encouraged to do more interesting stuff and so reap rewards (I try to do that anyway), it's about the autism-related things that make it hard to achieve anything. I've also received the ADHD diagnosis (at least, I think so; the psychiatrist was indefinite and the letter hasn't arrived). However, that doesn't come with any advice or treatment options either (possibly atomoxetine, which I could try but don't hold much hope for).
I do have a couple of Tony Attwood co-authored books at the moment, one on 'exploring depression' in autism/AS and CBT.