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Trogluddite
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17 Jan 2018, 9:33 pm

Over the years I have had quite a few courses of CBT (Cognitive Behavioural Therapy), primarily as a treatment for anxiety and depression. Before knowing I was autistic, it never really seemed very effective. In fact, it often seemed downright counterproductive, leaving me feeling frustrated and even more isolated from the rest of humanity - "What kind of freak am I if even this trained professional can't understand me?!".

After autism had been suggested to me, but still before I was diagnosed, I went for counselling again. I got lucky when the counsellor recalled that she had a colleague who had worked with autistic people before, and she arranged to transfer my case. The first time I saw the "autism aware" counsellor, I immediately noticed that her approach was different, and I got more out of this course of counselling than all of the previous ones combined (my only complaint is that it was limited to so few sessions.)

Now that I've had more time to reflect on this and to understand my autism better, I thought I'd share a few observations about why I think having an "autism aware" counsellor made such a difference. I think there are parts of it which probably apply to a wider range of health professions, and I think that the general principles extend to many other conditions besides autism.

First, some disclaimers. What follows are "highlights" which stood out over the course of many years, written to convey my frustration at the time. There was no single counsellor who showed all of the bad points, and for all I know, they all do wonderful work with non-autistic patients and maybe even some autistic ones. Some of the bad points may just be bad practice with any patient, and I also appreciate that autism aware therapy requires specialist training. CBT can be a valuable treatment for many people, and I'm trying to access it again myself at the moment. I'm definitely not trying to demonise an entire profession or practice.

I will also be using exaggeration and dark humour for effect 8O . The section "Found It!" in particular may be a bit close to the bone if the separation of your parents is an emotive issue - no belittlement or offence is intended, it is meant as parody.

I'll refer to autism-aware counselling as "Autism CBT", and the other kind as "Regular CBT", because I'm feeling lazy. Apologies if all the changes of tense and person get confusing - I've got to the point where every edit just makes it worse!

I Don't Know

Like many autistic people I can struggle to identify my own emotions. There is often a lag between an event and the feelings it produces. The emotions attached to my memories are very vague. I find it hard to find the words to describe feelings. Psychologists refer to this as "Alexithymia". If you ask me how I feel, and I say "I don't know", it's usually an honest answer.

Regular CBT: "I don't know" must indicate repression of an unidentified trauma or simply being uncooperative. Just pushes harder for an answer, which only makes it more difficult and frustrating for me to find one. It is my fault if the counselling is ineffective because I won't "open up" enough. My empty responses mean that I'm not fully committed to getting better.

Autism CBT: Works through the emotions which might be likely, helping me to identify the one that I can't name, using scenes from books or films as examples if necessary. If I seem to be struggling, allows me to take that line of questioning home to think about, to be discussed at the next session. Encourages me to associate this emotion with the thoughts and physical sensations that come with it, so that I can identify it more easily in the future. Explores the kinds of situations which might give rise to that emotion.

The Good Old Days

Regular CBT: Assumes that all of my woes are all due to a temporary mental illness, and that the goal is to return my mental state to how it was when I was "better", before the illness hijacked my thoughts and feelings. A time before being around people made me so anxious. A time before I found the world's demands so overwhelming. A time before my thinking was so unreliable. I should "visualise" these better times as a reminder not to be so pessimistic. "Huh? Before what? What do you even mean by before?"

Autism CBT: Helps me to work out which thoughts and behaviours are innate autistic traits and which are symptoms of mental illness, so that I can channel my energy into fighting the right battles. Helps me to accept that my autistic traits may be permanent, but that there may be ways to manage their consequences, or to speed my recovery when they cause a problem.

Just Be Yourself

Regular CBT: If it weren't for this horrible mental illness sitting on top of me, I would be able to behave and think in a perfectly "healthy" way. Whenever I behave or think more like a "healthy" person, the counselling is working and I am getting better. I shouldn't be so afraid to "just be myself", even if I "incorrectly" perceive that it often makes situations worse. If I feel that I can only really be me when I'm alone, or have times when I feel asocial, I need to do a lot more socialising so that I get accustomed to it. The implied "healthy" persona doesn't seem to be the one I identify as "myself".

Autism CBT: Recognises that "passing" is a useful coping mechanism sometimes, but that keeping up the act is exhausting. The innate traits that passing hides are a natural part of me and don't make me a broken person. Helps me learn to compromise with people so that I can manage the amount of socialising I do, so avoiding "boom and bust" cycles that lead to the burn-outs that leave me completely asocial. Helps me with ways to explain my autistic behaviour to people so that sometimes I don't need to "pass" quite so hard. Encourages me to put the passing completely aside when I am alone or during therapy sessions - to "just be myself" at least sometimes, and to be in control of choosing whether to pass or not.

Found It!

Regular CBT: Oh, so your parents separated when you were a teenager? We hear a lot of that sort of thing around here. Didn't bother you much? Oh dear, it must have made you repress all sorts of nasty things about not being loved; that explains all those "I don't knows" earlier, doesn't it? Your difficulties with relationships will almost certainly be due to abandonment or attachment issues. Let's keep returning to this subject over and over again, even though it doesn't seem to be getting us very far, and none of my theories arouse the slightest glimmer of recognition.

Autism CBT: It's really good that you feel your parents handled their separation in the best way possible; you maybe understood adult behaviour better than you thought at the time. Forming close relationships with people can be difficult for autistic people, even with their own parents. Lets see if there are any common patterns that fit all of your relationships, and which the separation didn't seem to change, to help us gauge how significant that event was. If you have any other thoughts about it, you can let me know any time, otherwise, let's move on.

The Unreliable Witness

Regular CBT: Regularly embarrassed because you make loads of social slip ups? Get followed around shops a lot by security? Always seem to be the grown adult that even school-kids single out to take the mickey out of? People tell you to your face that you are weird and parody the way you speak and move? Nearly got run down by a car again because you were zoned out? That'll be the negative thinking again. I'll bet that it doesn't happen anything like as much as you think; you are just choosing to focus on a handful of vanishingly rare events that your poor self-esteem has exaggerated. Try to focus more on the times when you have felt completely comfortable out in public.

Autism CBT: "OK, that's enough examples already, I believe you!" Helps me to understand how my behaviour might be perceived by other people, and why this might make them react in ways that I don't expect. Reassures me that the negative emotions I feel after these encounters are valid, and helps me to find ways to manage them. Helps me to accept that I don't deserve to be treated in these ways. Helps me to identify when people are acting out of malice, or when they have innocently slipped-up out of ignorance. Helps me to learn when it might be appropriate to identify myself as an autistic person or to explain a specific trait.

Pretty Please

This part is probably specific to the UK, our National Health Service (NHS) and other social services. Your mileage may vary, and I appreciate that healthcare may be even harder to access for some people reading this.

Regular CBT: Identify need for talking therapy with GP. Wait for an NHS therapist to become available (months). Have therapy.

Autism CBT: Identify need for talking therapy with GP. Referal to local autism service provider, if you're lucky enough to find one (months). Discover that this service is not funded by the NHS. Referal to local social services for funding stream (months). Local funding stream requires a matching service user contribution; those who cannot afford this must apply for disability benefits from central government (called PIP). Apply for necessary disability benefits (months, possibly years if the need is disputed). If both sources of funding are obtained, wait for a therapist to become available (months). Have therapy - spending the first few sessions undoing the damage that going through all that did to you! (PS: Add another couple of months for the time I spend procrastinating before I can make each phone call - every Aspie's favourite form of communication!)

Epilogue

My ultimate point is this. It seems obvious to me that CBT is more effective for me as an autistic person when the counsellor adapts their practice to fit my condition. Other people have written posts here that seem to confirm this. But, as far as I can tell, this is extremely rare, and I have been very, very lucky to experience the difference it can make. As it stands, when neuro-diverse people go to the doctor with mental illness and CBT is indicated, we are usually being offered a treatment which is tailored and tested for neuro-typical patients but not for us. Autism tailored healthcare is not "special treatment", it is "equivalent treatment", and should not require us to endure additional layers of stressful, time-wasting bureaucracy at just the time when we're least able to cope with it.

End of Rant - thanks for reading if you made it this far! :D


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B19
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18 Jan 2018, 3:29 am

If that's a "rant", then please keep ranting. I think you have made enormously helpful distinctions that could be an "aha" moment for a lot of people who have also found conventional CBT unhelpful.

It concerns me that when AS people are badly served by NT systems, it is the AS people who are said to have failed, never that the system is failing them or setting them up to fail.

My own view is that conventional CBT is not only unhelpful to divergent populations but often harmful. I think your distinctions are so good that you could consider polishing up your commentary into an article and submit it - Psychology Today online perhaps?



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18 Jan 2018, 5:04 am

I found the best luck I had was with a trauma counselor...some of my issues have to do with PTSD and past trauma, but yeah I just could never get CBT...never really helped me. So then I was really skeptical of the trauma therapist to, but then we talked, she did some things with an auditory therapy device that's an alternative to that eye movement therapy and somehow it helped. I don't even really know why/how it helped all I know is when I was just starting to think about quitting it we finally had a breakthrough.


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MrsPeel
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18 Jan 2018, 5:09 am

^this. Edit: following B19's reply.

This was an enlightening post.



Trogluddite
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18 Jan 2018, 6:55 am

Thankyou for your replies, I am very flattered. :D

B19 wrote:
I think your distinctions are so good that you could consider polishing up your commentary into an article...

It has been a long time since anyone was so enthusiastic about anything I created. My rusty, alexithymic emotions are beginning to remember what pride is! Thankyou so much for the encouragement. I will certainly post it up on the other forums that I use. I'd like to see what constructive feedback it gets from other autistic people before going further than that, but it's a suggestion that I will seriously consider.

B19 wrote:
My own view is that conventional CBT is not only unhelpful to divergent populations but often harmful.

Yes, I believe this too, and I think I maybe should have given it more emphasis - it's too serious a problem to be pulling our punches. I'll bear that in mind for future edits.

It's rare I do "bloggy" kind of posts anywhere, but this one had been stewing for quite a while...

Trying to access autism services began just about two years ago now, at the time of my diagnosis. All the big funding and eligibility decisions come in over the next few months. I've been thinking long and hard about what kind of therapies will benefit me the most if access is possible, and about what I hope to achieve by it. The post started out as my scribble pad for these thoughts, but a few recent posts here where similar subjects were touched on convinced me to try and develop it as an essay.

What I wrote would not have been possible without Wrong Planet. My autism assessment focused only on the aspects of autism necessary to confirm a diagnosis, and dug no deeper than necessary to achieve that. Follow up support consisted of no more than a few "what is autism?" pamphlets and a list of websites to visit. Countless people here have helped me to comprehend the true breadth and depth of how autism affects me, and shown me new angles to look at things which I have taken for granted for decades. WP is where I come to have my "aha" moments. :D

It also wouldn't have been possible without Sarah, the "autism aware" counsellor I mentioned in the post. She made a huge difference to my life at a critical time. I don't even know if her experience with autistic people was an official part of her position as a counsellor, but she would be an excellent example of best practice in my opinion. Ironically, I wasn't going to take the referral for counselling that time, precisely because my previous experiences had been so negative. As usual, I dithered and changed my mind at the last moment - it was a pleasant change not to have to kick myself for it like I normally do!


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CesarLlantoIII
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18 Oct 2018, 8:00 am

Wow, thank you so much for this post and this is very enlightening as to what my patients go through while I give therapy.

I was about to comment that in the "Regular CBT" you might have had a bad experience with a specific therapist but when you said you went through the same thing with multiple therapists I couldn't pinpoint as to why. Because your description about Regular CBT trying to divulge "deep, repressed feelings" sounded more like psychoanalytic rather than cognitive-behavioral.

I have to say that the "Regular" and "Usual" CBT for me has always been what you describe under "Autism CBT," but this might be because my degree before studying CBT is Occupational Therapy, so that means I have had experience with children and adolescents with Autism even before I learned CBT. So it might be different if a person is used to working with NT?

With CBT though, the therapist is trying to change the 'thoughts' of the person to change the 'feelings and behaviors' of a person which are based on said thoughts. But as a therapist, we also have to keep questioning our own thoughts because we understand that not all our thoughts are correct. And that is also why we cannot push our own thoughts to the patient but facilitate them to reach a better thought and test it in the real world after.

I am so glad that you found a CBT and a therapist who's a good match with you and I hope the same for all people with autism who are not having a good experience with their therapy.



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18 Oct 2018, 6:00 pm

Thankyou Cesar, your perspective from a therapists point of view means a lot to me.

I think that much of the problem here in the UK has been a late recognition of the prevalence of mental health problems, and a rush for a quick fix in a very top-down monolithic system (a necessary compromise to some extent for our state-run free healthcare). I do think that this has benefited people with short-term mental health problems at lot, but I get the sense that this has been achieved by narrowing the scope of training for therapists in order to fill posts quickly, such that it doesn't serve very well for people with long-term mental health problems or a chronic underlying cause for being susceptible to them.

You may be right that there is a psycho-analytic element in some cases which is not usually associated with CBT. Posts may well have been filled by newly-trained counsellors who previously had a different specialism. Our healthcare system, sadly, experiences very high turnover of staff due to poor working conditions and understaffing. Counselling does seem to be seen as a relatively less stressful and more flexible career by healthcare workers who have burned out in more high pressure environments such as residential mental healthcare.

A very common complaint that I hear here, is that counselling is "one-size-fits-all", completely at odds with your more enlightened approach. Limited availability also means that the number of sessions is often very restricted, leading to a tendency to rush therapy, and it's not unusual to hear people complain that they were just starting to notice the benefits as their allotted number of sessions came to an end; I've even had a therapist say to me directly that she considered leaving me without a therapist was unethical, yet had no choice and could offer no alternative. At a more senior level, it seems that counselling is seen as a quick way to patch up the inevitable mental casualties of the modern world, get them on their feet again, and get them back to work or childcare as soon as possible. The vast number of people with milder and more temporary problems who are helped by this system make it look very successful superficially, but comes at the expense of those that need a longer-term approach.


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missmurray91
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22 Nov 2019, 8:46 am

This post is a year old, but I wanted to say that I'm going to print this out and share it with any relevant medical professional.

Thank you, thank you, thank you!