Published on 12, July, 2020
Following mention of autism specific CBT for the treatment of depression and anxiety in another thread, I thought I would duplicate here a short article which I wrote contrasting my experienced of non-specific and autism-specific counselling, which I first posted in the forums at WrongPlanet many moons ago.
That's the kind of CBT for me
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 . 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 KnowLike 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 DaysRegular 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 YourselfRegular 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 WitnessRegular 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 PleaseThis 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!)EpilogueMy 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!
Thank you for writing this. I am sure this is a cheesy response but it makes me feel less isolated knowing other people have had similar experiences !
Yes, I think that CBT can be helpful but also that without any autism awareness or adaptation of the process, there is a risk of driving a person further inside themselves and onto their own (perhaps very limited) inner resources. They'd then maybe come away feeling unheard and "What's the use!" while the nice little PHQ09 and GAD07 forms commonly used might indicate things have improved because the person has obligingly indicated a slight improvement. Plus being told something like, "You don’t want to change and get better and we can't see what else we could do try to help you when you won’t even try" can hardly be described as a therapeutic intervention! It would be good to find an ND therapist or one who has had more specific training but I suspect the chances of this in the NHS are quite low. The information is out there but, it seems, not generally being incorporated into NHS practice. :(
i quite liked this book, notwithstanding the references to "disorder". www.amazon.co.uk/.../ref=dbs_a_def_rwt_hsch_vapi_taft_p1_i1
Wow. This makes so much sense of how little CBT has ever worked for me! Last time I had CBT they cut my course short because I wasn’t being compliant. Essentially was told I didn’t want to change and get better and they couldn’t see what else they could do try to help me when I won’t even try.
I had cbt through my teens too and it would seem to Have been helping from an outsiders perspective but that was because I started to learn the responses they wanted and I just copied the responses they’d wanted back. I would often leave CBT feeling more suicidal and depressed than before I went but was always too scared to say anything because I didn’t want to seem like I wasn’t being a compliant patient who couldn’t be bothered to try.
By by the time I started CBT again in later teens to early adulthood I’d gotten to a point where I even stopped caring about appearing like I wasn’t compliant. They wanted so much more change from me than I could muster and once again i’d End up at home feeling suicidal.
Now my new CPN is suggesting things like cbt for anxiety and all I can think is, “Nooooooooooo” I mentioned wanting to be prescribed diazepam for taking only when needed (as a last resort) and She didn’t like this suggestion at all, saying I should learn ways to deal with it instead. And that’s just it, I’ve learnt ways and I implement them! But sometimes no amount of those ways seems to help!
Thankyou.
As far as I can tell, most front-line MH counselling seems to assume that anxiety or depression are the primary focus, and that they are always treating what, for the patient, is a temporary aberration, and possibly the only one they'll ever have. Success rates are artificially inflated because the vast majority of cases are people with relatively easily-treated conditions, many of whom may even have recovered naturally if just given a little more rest (try getting a GP to prescribe you rest - just rest!). This makes MH policy for counselling look very successful without any need for it to have much impact on those with more persistent MH conditions, or where anxiety/depression are a consequence of a chronic condition. People that I've known with OCD and schizophrenia have had pretty similar experiences to those that autistic people report.
Like you say, this is essentially just patching up society's predictable casualties so that they can be sent back to employment and looking after the kids as quickly as possible. For many patients, it gets them back to where they want to be, and even those services are woeful considering the need. But when I see an announcement of yet another Government "mental health initiative" worth X million pounds, I have little hope that the services that people like us need will be improved.
Oh,,, and it took me ages to hit the like button that was invisible, come on NAS sort this out,,,nearly hit the report button,,,yikes,,,no way,
Wow how enlightening that was,. Big thank you Trogluddite.
I haven’t had cause to have CBT, but just seeing the alternatives you give it screams out as obviousely why “ normal” CBT doesn’t really work on our analytical fact based minds,
In fact so called “ normal” CBT seems like a software upload, just reinforcing the pre programmed drone exhistance! all things we find difficult to accept on a daily basis.
It is sad that individuals like yourself have to have gone through so much incorrectly to see why it doesn’t work.
May I say your story has and will give much help to many, already others have said they can bring up the reasons for specifically tailored CBT based in autism needs.
Big hug for being a star. () ()
NAS36609 said:it’s really helpful for me in trying to explain to the psychologists I see the importance of them taking into account my autism when assessing/treating me
I'm really glad to hear that. When I wrote the article, I was only really thinking about the need for services and to let people know that alternatives are possible. It only dawned on me much later that experiences like these could be used to help guide a counsellor (or other MH worker) when we feel that treatment is ineffective. I'd encourage anyone who's struggling with MH treatment to be assertive about what their personal goals are, and to get across any aspects which they are uncomfortable with or don't seem relevant. Healthcare should be a team effort mutually agreed between worker and patient, not a one-size-fits-all conveyor belt. My particular experiences may not apply, of course, but there is nothing to be lost by discussing your personal analysis with an MH worker if things aren't going well.
NAS36609 said:they’ve already managed to diagnose me with something I don’t have without even assessing me for it
I've had a fair few of those informal diagnoses, too, prior to my autism being identified. Over the course of three decades or so I've been told that I "probably" have GAD, bipolar, or a personality disorder. It's strange how certain these people have seemed considering that, at no point, did any of them refer me for a formal diagnosis of any these things. Two of the "Regular CBT" counsellors even wrote to my doctor advising that I should see a psychologist because they were so at a loss for what to do with me. I know that my first two attempted referrals for an autism diagnosis were rejected due to CCG funding issues (the NHS unit that eventually diagnosed me did not exist at the time). I'll never know if those counsellor advisories never happened for similar reasons, but I rather suspect it.
Thankyou all for your kind compliments!
I think that one of the of the saddest effects of bad experiences many of us have with mental health care is how averse it makes us to trying further treatment. I could very easily have not ended up seeing the autism-trained counsellor. At the point of referral, the counselling wasn't intended to be autism-specific, I just got extremely lucky that the counsellor I initially saw remembered having a trained colleague and was able to arrange a case transfer. Not knowing in advance that this might happen, I nearly rejected the offer of counselling due to my previous bad experiences. It's noticeable how many of you have also experienced this aversion, and it is something very commonly heard on autism forums.
Worryingly, that aversion is also likely to reduce demand, reducing further the (lack of) urgency for making these services available. It's all too easy to tar all therapy with the same brush when there is barely any awareness of how practices can be adapted, and few reports of how successful it can be. That was a large part of my motivation for writing the article, and it's nice to hear qwerty's report about how educational support can be effective when done well.
Thanks for sharing this! It's really helpful and it resonates strongly with my experiences!
I've tried counselling a couple of times but dropped out after a couple of sessions because I didn't feel it was very helpful, and I can strongly relate to the "regular CBT" stuff, like being pushed to say how I feel when "I (really) Don't Know", or feel that they don't understand/belief my experiences enough and being asked to focus less on negative thinking (The Unreliable Witness), or "just be yourself" when they don't really understand who you are, etc.... It's really not just counselling that does this, but a lot of school teachers and sometimes communication my parents are like this. And it's just really frustrating feeling pushed or not being understood.
I was quite reluctant about getting Asperger mentoring support at my university because I was afraid of being misunderstood, and later get annoyed. But the support turned out to be great. I felt that I was understood, and the suggestions during our sessions were practical and useful. It has helped me accept who I am and understand how my behaviour might be perceived by other people, and learn how to socialise better.
Thanks so much for such a well thought out rant. This resonates so much with me as the CBT I've had in the past has made me feel so much worse. You're absolutely right that we should have equivalent treatment. Mental health seems to be last on the list of priorities with autism as the poor relation even to that.
Thank you so much for taking the time to post this - it’s really helpful for me in trying to explain to the psychologists I see the importance of them taking into account my autism when assessing/treating me (they’ve already managed to diagnose me with something I don’t have without even assessing me for it because they have misinterpreted some of my behaviours and communications, but unfortunately they turn their ears off when I mention my autism!), and very insightful as I have never heard any personal accounts of experiences with adapted CBT.
I did try asking my GP to see someone who understood autism and mental health problems in the first place, but I was told such services weren’t funded in my area and my local CMHT don’t offer adapted CBT. As you say, this is all too common a problem and yet we should be entitled to equal care.
You have put it all very clearly Trog! And it’s true. If the therapist knows how to adapt for autistic clients it certainly helps.
Trogluddite, that was genuinely enlightening thank you! All of the 'Regular CBT' stuff you mentioned resonates strongly with my experience and why I've been averse to engaging with it further - even though it was once pretty much forced upon me with an "or else.." by my employer a couple of years back..