Reflections on CBT as an autistic person - Part 1
Reflections on the efficacy (or otherwise) of Cognitive Behavioural Therapy for autistic people.
If you would like to understand why CBT, like other behaviourist approaches, is so problematic for autistic and other neurodivergent people, then watch this hour long webinar led by Ásdís.
Reflections on CBT and autistic thinking: Webinar for professionals
https://youtu.be/EPNcZ_MQ9Uc
The webinar indicates clearly why CBT for autistic people may not only be useless, but postively harmful, damaging one's sense of identity as well as mental and physical health. I would also recommend watching it for the way it explains the pervasive and persistent ways in which autistic people find their voices ignored and their experiences denied in the normal course of living. Autistic people become accustoimed to being gaslighted at the institutional and everyday levels by both professionals and ordinary members of the public, even, and maybe especially, friends and colleages. This leads them to abandon dreams of thriving in order to concentrate on the tough challenge of merely surviving, by way of mirroring the expectations of 'society' and masking. That approach consigns autistic people to the buried life, dead before their time. And I'm against it. I am very vocal in telling people straight that they are not listening and not understanding, and doing so with such vehemence and obstinacy as to force them to make the effort to see the point I am making (however inadequately). If people are not prepared to make that effort, autistic people should have the courage to put them on hold, keep them at a distance, ignore them, or just plain remove them from their lives. As a matter of self-protection and self-preservation. Such people will continually drag an autistic person's spirits down, have them thinking it is they who are at fault and in need of mending their ways. This webinar shows how CBT can become complicit in that negative experience that is all-too familiar for autistic people. It is difficult for an autistic person to stand his or her ground here. The general lack of help makes people in desperate need of support and guidance accept whatever is offered on the terms set by the professionals and experts. The tendency of autistic people to become socially isolated also leads them to keep suffering the systematic gaslighting of the few people in their lives, for the reason that they have no-one else. Always, the hope that toxic others will come, finally, to listen and see the points you are making sustains you through the despair. Autism can very much be the condition of hopeless hope.
I offer this webinar as an education for neurotypical people who think they know better, letting them know how little they do actually know. I offer it, too, as reassurance for autistic people that their experience of being gaslighted is common, known, and can be identified as being based in the errors of those who think they know better.
Slides can be found here:
I was inclined to remain in neutral, simply inviting people to watch the webinar and/or ponder the slides, allowing them to draw the right conclusions. It's enough. I'll issue the invite here and state it sufficient for people to have watched and pondered.
I will also offer my own view, in light of my own experience and with respect to the key points raised by the webinar. I have on this website been highly critical, even contemptuous, of CBT. I am even more critical in spoken communication. In asking for help in the past I soon got used to the options reducing to two: CBT or medication. This is a common experience. One despairing fellow I communicated with for a short while stated bluntly that all the authorities offer is “CBT, CBT, and more &**&*$% CBT.” “It would have been better had they issued a rope to put round my neck.” The man was not autistic. He was desperate for help and found only 'advice' as to how those in need may best help themselves. That has been my experience. The advantages of CBT to the authorities short of resources and to a society that could care less are obvious: CBT is the cheap and change-free option for authorities that have got nothing to offer with respect to the societal changes autistic people need to take their places in society. The emphasis is very much on what people can do for themselves. CBT offers fancy scientific and philosophical cover for the same old blunt message that people should 'pull themselves together.' At its best, I found CBT to involve doing things I have been doing since ever. More often than not, though, it involves the autistic person in making changes in habits and patterns that, although less-than-optimal from the perspective of 'normal' social functioning, may well be more in tune with an autistic person's neurology than 'theory' can grasp. They may also be essential to an autistic person's coping mechanisms and survival mechanisms. Those mechanisms may well keep an autistic person living far below his or her potential but, in the absence of healthy alternatives, at least keep them alive and just about functioning. Change may well involve self-change, but it also, crucially, involves 'society' – others - making changes too. CBT leaves the institutional, the environmental, and the social dimensions out to leave the individual person alone bearing the burden of change.
The clinical psychologist delivering this webinar emphasises something I've been emphasising for a long time – when it comes to change and the responsibility for initiating changes there is too much focus on personal thoughts and feelings (the self) and precious little (as in none at all) on the social, the environmental, and the relational aspects of a flourishing human life. The burden in therapy is always on the individual in need to change. It's a fancy form of self-help that utterly scotomizes the social dimensions of human living. The advantage of that approach to authorities with scant resources and limited scope is obvious - it is cheap and puts the onus on self-change as against the societal change that is required. Whilst one could conclude from that that CBT is a useless waste of time, the problem is actually far worse. Wrong diagnosis leads to wrong treatment, with the result that CBT is not only useless but can be positively harmful to autistic people, especially when it is your basic neurology that is being targetted as a suitable object for change. (To give one example of how wrong diagnosis affects autistic people, depression is frequently diagnosed when the problem is one of burnout, with autistic people being told to get out and act and be positive when they actually need to withdraw, rest, and recharge. This has happened to me several times now. Discussions with my doctor – and with others not remotely so well qualified – soon make it clear that my problem is not one of depression, however much the questionaires return the same diagnosis. Instead of the real issue being detected, I have been offered links to You Tube walking videos complete with 'authentic bird sounds'). Like I have never had the wit to locate pleasurable videos on You Tube and enjoy to my heart's content. I told the woman offering advice that I once fell down a mountain in California, survived with internal bruising, found my way back to civilisation by walking through a forest containing deer, mountain lions and bears, crossed rivers and climbed boulders, got a lift home by the pastor's wife, and promptly won a dart's match at the English pub in the evening. I left her pondering whether I was a fantasist whose vivid imagination had exploded in isolation or was a truth-teller expressing contempt with unusual panache and flair.
I've been outspoken on this for a long while now. This webinar backs up the things I've been saying but, most importantly, backs up the criticisms with sound reasons and explanations. I've had dealings with the odd expert claiming, against my reservations, that CBT is based on sound philosophy. I told one that I was a philosopher, asking her if ever she fancied some Hegel on the progress of Reason to consciousness of freedom then she should give me a call. Cue nervous laugh. I'm one of the awkward squad, always was, always will be. That's when I'm at my best. Had she been an Hegelian, I dare say my words would have swept her off her feet. But when I hear that CBT is grounded in science and philosophy I hear a familiar managerial rationalisation and ideology that involves the pretence of change, ticked boxes, and bureaucratic self-congratulation at yet another success. I don't care for an ideology that perpetuates itself through the resignation and accommodation of people in need of help.
I am used to being told I am wrong, that I am 'stubborn,' 'cantankerous,' and 'bloody-minded. I stick to my guns through thin and thinner, and have found out time and again that I was right all along. My instincts are good and rarely let me down. It tends to be reasoning that leads me astray, not least when I allow myself to become embroiled in the rationalisations of others. I don't care for therapy (and have always refused medication). The absence of the social dimension vitiates the therapeutic approach to autism. A nice job embedded in the community where people know, like, respect, and recognize you is all you need. But that's becoming the hope and dream of all people in an age of division, disconnection, and detachment. But I know it to be true. I worked in distribution in my local community, walking street to street, meeting the locals, who grew to know me well, sharing stories and jokes. I worked as an essential worker through Lockdown. As someone who was in the 'at risk' category I was offered paid sick leave but refused. I enjoyed my job, I enjoyed working, I enjoyed seeing people. The problems are not ones of depression or personal inadequacy, they are problems of social attunemenent, and it takes two to Tango. CBT places the accent squarely on just the one partner in the dance.
But don't take my word for it.
Watch the webinar if you seek understanding (which isn't too much to ask in an age deluged by repetitive noise and distraction).
I would express my critical point most reasonably by suggesting that all therapeutic approaches can be equally helpful and/or problematic depending on many things. CBT may work for some people some of the time in some way or other. That's a fairly modest claim that I am prepared to accept. I don't actually place much faith in CBT, having been doing something like it implicitly my entire life and finding it to go so far but no further. My instincts told me from the very first that it doesn't touch the nature of my particular problems. And I have learned not to allow myself to be bullied into compliance and silence.
You can place me at the problematic end of the spectrum, one who refuses to mask in order to appease experts and professionals and make them feel that their methods are working when I know them patently to be failing.
The findings reported in the webinar are profoundly concerning. Autistic children and young people given CBT (cognitive behavioural therapy) for anxiety say clearly and explicitly that it doesn't work, but are ignored by experts and researchers who claim that it does, and record a success where those on the receiving end declare failure. The professionals are happy, but the 'clients' themselves are not – and that is considered a triumph for the institutions involved.
CBT works to change your line of thinking, on the presumption that the thinking of those to be treated is wrong and disordered. It leads to a person coming to question the veracity of almost everything in his or her life: perceptions, feelings, relationships; and in a compulsive and unhealthy way. In other words, it has the autistic person doubting himself or herself, disbelieiving his or her own instincts, feeling anxious and seeking external validation and approval – which is everything that autistic people can tend to do to bring themselves down.
CBT doesn’t work for autistic people because it is based on the premise that lived experiences don’t match the negative thoughts in your mind. Sadly, this is not the case for most autistic people. All too often, negative life experiences in relation to others tell autistic people that they are not good enough, unlovable, mistaken, and that their needs do not matter. CBT on top of this experience breeds resignation and accommodation, an acceptance that you are living in error, your problems are self-authored, and that your felt needs do not matter because they are wrongly formulated.
I have been given the name of David Tuller as a researcher who has worked tirelessly to expose the poor methodology and bogus research used to roll out CBT. Whilst I have yet to read his work, I know more than enough about the managerialism and bureaucratic ideology of dominant social institutions not to be surprised by reason taking the form of rationalisation.
I note the common complaint from autistic people that CBT has never worked for them and that they found it better to return to their old ways and routines, building on these, adding new steps to facilitate change. Comments such as these struck a chord with me. When I first got in touch with the Integrated Autism Society, we went through the various steps that can be taken to manage stress, change, sensory demands, communication, health etc. I approached the IAS asking for help and advice. It was somewhat dispiriting to learn just how well my methods of coping with all of the above were judged, scoring in the range of 8-10/10. Autistic people tend to know how to cope and survive, they have had a lifetime having to learn how to do these things for themselves.
What is disheartening, and actually disgusting, is the extent to which experts and researchers routinely disregard the voices and experiences of the autistic people they study and are supposed to help. But, as someone with an academic background in the social sciences, I am not in the least bit surprised – I know the bureaucrats of knowledge when I see them, I know how managerial ideology operates, and I know how dominant institutions entrench and extend their power by way of self-validation. It is a basic internal-external dialectic, with a need or a problem coming to be appropriated, professionalised, and bureaucratised, with 'solutions' in the hands of the select few administered from above and from the outside. The 'clients' who complain that the solutions don't work are simply dismissed as mistaken. Because their testimony doesn't fit with the narrative the bureaucrats of knowledge wish to construct as a matter of professional and institutional self-preservation. Autistic people aren't allowed to have an active voice in the autism narrative. That's why I don't trust the vast majority of autism researchers. I have heard autistic people say more than a few times now that the experts and professionals hate autistic autistic researchers and resist their involvement in developing the autism narrative.
It is easy to be cynical. CBT makes autistic people seem less autistic and therefore less in need of support, so it's a huge success for the professionals, despite the fact that it didn't make autistic people feel better at all. Same old same old. The professionals justify their existence and autistic people remain confined in Mask City. And 'society' needs to change not one jot. This is no more than a medically validated systemic-institutional gaslighting for the professional win. It's not just that the need for support is reduced as a result but that it is perceived by others as needing to be reduced given the claimed success of the therapy. It's an institutional stitch-up, with autistic voices delegitimised as mistaken, with autistic people deemed incapable of expressing their experience accurately. In this respect, CBT serves as a tool of self-repression and self-abnegation, a tool by which professionals get autistic people to gaslight themselves. My instincts alone told me that this was the case as soon as I was introduced to CBT. People in need of help and having the courage to reach out are inclined to accept whatever help is offered on whatever terms it is offered.
A favourite proverb that I quote a lot, learned from reading Dumas' The Three Musketeers when little, is that 'the most beautiful woman in the world can give only what she has.' There is always the clash between the scale of one's needs and hopes on the one hand and the resources that others, beautiful or otherwise, make available to you in fulfilment of your requirements. I have learned to expect little. Having seen hope after hope thwarted, having learned to scale down those hopes to the most modest of heights, and still have them dashed, the last thing I expect from the institutions and authorities out there is beauty. As soon as I come into contact with various bodies now, I cut quickly past the promises, seeing them for what they are: all that they have to offer tied up with nice ribbons. One of my favourite singers is Edith Piaf. She was used to being complimented and flattered and didn't waste any of her time on it. If someone introduced themselves to her she quickly cut short the flattery to see if they had something to offer her, songs, lyrics, material, something she could use. That's the approach I take now to authorities and institutions. It saves wasting time and energy in pursuit of idle promises made to make organisations sound a whole lot more helpful and useful than they actually are. They give what they can, which is a whole lot less than a beautiful woman.
I'm tempering my words here, to conceal the anger and disgust. We are being had. And the really frustrating part is that none of this will come as a surprise to autistic people (or to people suffering with mental health for that matter). CBT teaches people that they can't trust their instincts and feelings and that any negative emotions on their part are not accurate evaluations of negative experiences and external relations but merely a lack of understanding. My instincts rarely let me down; it is my reason, allied to my natural good will, that leads me astray, not least when it comes to trusting authorities and experts who claim to have my best interests at heart. The point applies generally with respect to the dominant institutions of society. We are being groomed, gamed, and gaslit, constantly trolled and triggered, by masters of the black arts of division, diversion, and deception. And I for one am not falling for any of it ever again. I believe in genuine authority. I vehemently oppose the abuse of authority for ideological and interested purposes. There is currently a pervasive trend of gaslighting people into believing that their issues – the perpetual crises of the world - are all their fault.
CBT teaches you that you can't trust myself, begging the question: who can you trust? The experts and professionals? Not likely. CBT thus emerges as just another set of professional "therapeutic" gaslighting techniques in a society overrun with them.
I'll end this introductory with a quote from a contact on social media:
“I have had CBT twice and it was meh .. From my understanding getting a psychologist on the NHS is not worth it (apparently) because of the long waiting list and referral.” But, besides having to wait forever, is there any point?
To the webinar
Reflections on CBT and autistic thinking: Webinar for professionals presented by Asdis Bergporsdottir, clinical psychologist.
Does CBT work for autistic people?
Asdis seeks to examine the question of whether and how CGT works for autistic people. Or doesn't work. She starts with the research which claims that Cognitive Behavioural Therapy (CBT) can be a useful treatment approach for autistic people. CBT focuses on helping individuals identify and change negative or unhealthy thought patterns and behaviours. The claim is that CBT 'has been found to be effective' in reducing anxiety, depression, and obsessive-compulsive behaviours in people with autism, as well as improving social skills, communication, and overall functioning.
That's a big claim indeed, not least given the extent that autistic people themselves – the people on the receiving end of treatment – claim that CBT has not worked at all.
So how are we to decide how useful, actually, CBT is for autistic people when the professionals say one thing and autistic people say another. The claim that CBT 'has been found to be effective' needs to be tested and parsed.
Asdis starts with children. The many studies that have been done on anxiety in autistic children make it easy to do a good meta-analysis. Sharma et all (2021) says “it works.”
The clinicians measure it and say “it works.” In an age in which measurement is equated with knowledge, that's the end of the matter. Measurement is validation. That which cannot be measured is of no count and therefore irrelevant. This is a core thesis of the managerial ideology. But the parents, too, say 'it works!' The professionals are happy and the parents are happy, so where is the
problem? The children say it doesn't work. That's a not inconsiderable fly in the ointment, given that helping autistic children with anxiety is the entire point of the treatment. The response is to cast doubt on the children's testimony and imply that they are not smart enough to know that they have been benefited by therapy. That approach is plainly ideological in being self-validating, insulating therapy from the criticism of those it is applied to.
"Given that the children/young people themselves are reporting little change in their anxiety, it might be tempting to think that either they are reluctant or somehow unable to identify their anxiety and that the adult ratings are more accurate."
This discrepancy has been reported for years in CBT for ANX in autistic children.
The conclusions drawn are interesting, less for what they claim than for what they reveal about the professionals and institutions involved.
"There was no significant difference between CBT and control for symptoms related to ASD based on self-reported outcomes ... whereas CBT significantly improved the symptoms related to ASD based on informant-reported outcomes, clinician-rated outcomes, and task-based outcomes. Moreover, the pooled standard mean differences indicated that CBT has no significant effect on symptoms of social-emotional problems based on self-reported outcomes."
From this, it is concluded:
"These findings indicate that CBT may significantly improve the symptoms of ASD and social-emotional problems in children or adolescents with ASD."
Cognitive behavioral therapy for autism spectrum disorders: A systematic review (Wang et al., 2021)
Before jumping to the conclusion of a happy ending, it is worth noting the word 'may' to significantly qualify the positivity of the words 'significantly improve.'
Many children and adolescents do not report any improvement, significant or otherwise.
There are further complications which serve to undermine the rosy picture being painted. Levy et al (2022) find that the relapse rate for people with autism to be so high that it was found professionally and institutionally 'prudent' to omit them.
"Visual inspection of the forest plot ... shows that two of the highest relapse rates came from the two samples of children with co-occurring autism spectrum disorder (ASD); one of these studies was a clear outlier with a 44% relapse rate. We therefore decided to omit the ASD samples in subsequent analyses." (A meta-analysis of relapse rates in CBT for ANX and related disorders in youth (Levy et al., 2022)
I would suggest, rather modestly, that the omission of contrary evidence somewhat invalidates the research findings and reveals an ideological and institutional purpose at work.
Selles et al. (2014) didn't ask the children.
McNally Keehn et al. (2013) reported no significant change when children were asked.
Relapse rates: Sells (44%) McNally Keehn(20%)
The conclusions drawn by professionals and researchers are cheery enough, but are based on dubious and disreputable assumptions.
Autistic children who suffer from anxiety show improvement when treated with CBT but, on account of being autistic, are unable to understand that their anxiety has improved. Clinicians keen to see their efforts succeed and parents hopeful for success claim to see the improvement, so it's problem solved. Except that the children are still anxious. Studies don't measure relapse, and omit the evidence that contradicts their cheery conclusions, so no-one other than the anxious autistic children themselves has to worry about it.
Asdis poses an ethical question (if it is not illegitimate to introduce ethics into the realm of the measurable): 'if the children's feelings are not an important outcome of therapy, then why do we send them to therapy?' If how children feel is not improved by therapy, then what is its point? One could almost believe that institutional self-aggrandisement and ideological self-validation is the overriding concern of research. Everyone is happy except the anxious autistic children, who remain anxious despite the claimed success of therapy.
Asdis describes this attitude as 'frightening.' She gives another possible explanation, one that challenges notions of professional and institutional success. In treating autistic children suffering from anxiety with CBT, the children learn to mask their anxiety so well that the adults are happy to believe their condition has been improved. (Contrary evidence is omitted and ignored). When the masking wears off in time, the adults believe the anxiety they see to be a relapse. In truth, the anxiety hasn't returned, it has been there all along and simply been masked. The relapse is the relapse of the masking and not a return of the anxiety.
The question needs to be posed again – if the actual feelings of autistic children suffering anxiety are not considered to be the central concern of therapy, evaluating its outcome, then what is the point of therapy?
With respect to adults, there are much fewer studies on the effectiveness of CBT, making meta-analysis difficult.
Linden et al (2022), cautiously claims that, in line with existing literature, 'some forms' of CBT 'may' improve health-related quality of life in some autistic children and 'may' decrease anxiety and depression scores in some autistic children and adults, adding that 'further research is necessary.' Citing limitations in the quality of evidence, the authors say 'we are unable to agree with researchers who concluded that CBT is an effective intervention for all autistic people.' That's not an overly dramatic claim, merely avoiding extremes of positivity and negativity – CBT may work for some people but not necessarily for all people, 'further research is necessary.' It's a job for life.
The study also notes this:
'Lack of reporting around potential harms and meditation-related side effects is problematic in light of the fact that a large proportion of participants in mindfulness-based interventions can experience negative side effects.' (Benefits and harms of interventions to improve anxiety, depression, and other mental health outcomes for autistic people: A systematic review... Linden et al., 2022)
I shall keep my views on meditation, mindfulness (and medication) to myself. Meet me in private and brace yourself for some uncouth Liverpudlian oaths. If those things work for you, then fine, you are welcome to them. Listening to Francoise Hardy for hours on end is enough to take me to my happy place. Her lyrics are often sad and disconcerting, but she has a most soothing voice and style.
I shall also note that the authors don't make any comment about CBT itself being harmful. Which isn't to say that CBT can't be harmful, merely that the authors don't consider the possibility, whilst criticising some aspects of meditation and mindfulness.
Another recent study (McMaughan et al. 2023) claims that a range of studies in a variety of contexts suggests that 'mental health care for autistic people has not improved in the decades since these formative studies (Carbone et al., 2015; Croen et al., 2006; Nayfack et al., 2014). (Mental health-related hospitalisations among adolescents and emerging adults with autism in the United States: A retrospective, cross-sectional analysis of national hospital discharge data (McMaughan & et al. 2023)
Current recommendations for autistic people with mental health problems tend to be CBT. That's precisely why the nature of CBT and its application is such a big deal for autistic people suffering with anxiety, depression, and other mental health issues. If we have researchers, experts, and professionals claiming that CBT 'works' when autistic people are saying it does not, only to have their voices 'omitted,' then there is a need for caution. The waste of time and energy is bad enough, but the destruction of hopes and expectations, the misplaced faith, the self-doubt, the defeat and disillusionment can be positively harmful, mentally and physically.
So where are we with respect to recommendations of how to adapt CBT. Clearly, the dominant view is that CBT is an important therapy for autistic people (regardless of what autistic people say). Adaptations for CBT are only on delivery methods except for: "placing greater emphasis on changing behaviour, rather than cognitions, and using the behaviour as the starting point for intervention." These adaptations do not apply to any behaviour - but to behaviour within CBT theory - that is, within CBT models. That's an important point. There is something circular, self-referential, and self-validating about the entire process. The problem is that we are referring not to any behaviour but specifically to behaviour within CBT theory and models.
Whilst cognitive therapy is routinely recommended for autistic people, there are reasons for doubting whether the models used in such therapy adequately describes the autistic experience. This is an important question since, if the models are not abreast of the autistic experience, they will likely point to the wrong targets when it comes to treatment. This renders the therapy not merely a useless waste of time and energy, but potentially harmful.
The fundamental question that needs to be the very first that is asked is this:
Can CBT models describe the autistic experience?
If the answer is negative, then any treatment which ensues will be ineffective and more than likely harmful. Unfortunately, the question is rarely asked, let alone made uppermost. The reason is not difficult to fathom – professionals and institutions have their interests, apart from autistic people. Autistic people are considered the objects of enquiry, not the active knowledgeable agents of their own autistic experience. There is a division here between inner need and identity and external appropriation and administration.
Asdis quotes what a number of autistic people have to say about these models.
“For me, a CBT focus in itself is unhelpful. All it does is point out more things I "should" be masking and teaches me to put more effort into masking rather than understanding myself and others properly. It taught me that the things I do and think are "wrong", which increased my anxiety and convinced me I was making up my feelings and problems.”
(Sonny Hallett, quoted in the Scottish Survey of Autistic Adult's experiences of counselling, 2020).
Another autistic person characterises CBT as “the therapy where you look yourself in a mirror and lie to yourself.” That rather sums it up nicely for me. I have experience of this in broader terms than health and autism. I have seen it at work in the field of employment, with the unemployed being subject to institutional pressure and manipulation to get them to see their unemployment as their own fault, inducing them to train, adapt, lower their expectations, all to accept whatever employment is available and on whatever terms. The consistent theme is this: the burden of responsibility falls entirely on the individual in need, with all the changes demanded being made by the individual, none at all by 'society' in its various aspects. The individual is isolated, rendered powerless and dependent, and subjected to concerted institutional and psychological pressure to adapt and accommodate themselves to 'the system.' The approach is geared to inducing each person coming to believe and accept that they are the authors of their problems and that only they can save themselves – because no one else is coming. It's an approach that fits the individualism and predatory, competitive Darwinism of the neoliberal age perfectly. And it is anthropologically and sociologically illiterate. But it's cheap, requires little of social institutions and their functionaries, and shifts responsibility for problems and their solutions to individuals in need. The week will go to the wall, but that's fine, because it's their own fault in any case.
CBT is a psychic self-immolation and violation, inducing individuals to doubt their judgement, deny their instincts and emotions, lie to themselves, and silence their voices.
I've heard this my entire life and am past caring. I tell the organisation men and women of the world to go and stuff themselves with green apples, to save me the job of doing it for them. Such inhumanism is beyond polite manners. If you can't tell it like it is when you have nothing left to lose, when can you tell the truth?
Another autistic person says “in CBT I learned a lot of new technical words. After CBT I had the feeling there was something more wrong with me. I even felt that I was doing something wrong.”
It's all about increasing your self-doubt, making you feel as though you are suffering because of things you are doing wrong, because you are failing to do things right, like the normal people who are making such a success of living in the social world around you, from which you exclude yourself by your failures.
Been there, seen it, had it, done it. I went into overdrive when it came to education and training, gaining enough certificates to paper my walls at home. I was a diligent straight A student, all the way to the highest levels. I bought the idea that my problems were my own fault, knuckled down, conformed, worked hard, and still failed to 'click' with the social requirements for successful living. I wore myself down to a point beyond exhaustion in the process. My story is not unique. So imagine being introduced to CBT and being told that your problems are a result of you not thinking and acting as you ought. There can be no surprise that a number of autistic people who have done CBT claim to feel worse as a result of treatment. They come away doubting themselves to an even greater extent than before, finding their worst fears that there is something wrong with them confirmed.
I'll give the advice I gave to a young mother of an autistic son, who was feeling confused and fearful in face of all manner of contrary advice she was being offered:
Be cautious of all advice. People who appear to know a lot tend to know very little beyond their own experience; they are experts by way of their own knowledge/stupidity.
Have the courage to trust your own instincts and to form your own judgements; you are far smarter than you may realize.
To return to Cognitive Theory and the CBT models.
CognitiveTheory is based on The Cognitive Triad, which proceeds according to the cycle of Thoughts-Feelings-Behaviour. The ways in which these affect one another forms the basis of therapy. It is noteworthy, however, that everything happens within the the mind of the person (thoughts and feelings) and the behaviour we can visualise. The most striking thing about the model is not what it contains but what is missing. The environment in which thought and action takes place is absent. There are no interpersonal relations and no sensory stimuli (sight, sound, vision). Given that human beings are both social and natural beings, existing within a definite environment, this is problematic to say the least. A model that lacks the environmental, the social, and the relational would appear to close autistic people off within their own conceptual prisons. Everything happens within the thought patterns of the individual. Far from being a model for human flourishing, this seems more like a Cartesian Hell, neglecting everything that makes for a round and rich human life.
Even the most recent autistic models ignore the environment (South and Rodgers 2017). Everything happens within the mind of the autistic person – there is no environment. It follows from this that the
emphasis when it comes to treatment and change falls squarely on the individual. But if there is no accompanying transformation in the relational, the social, and the environmental, the individual is effectively being charged with undertaking an impossible task, effectively creating and recreating his or her own world as a matter of will.
Anxietyand Depression
If we look at the Social Anxiety model (Clark and Wells 1995) we can see that there is a lot going on, the processing of the self as a social object within a social situation. This presents huge challenges autistic people given problems with processing speed and working memory, with sensory stimuli (mixing and overload), and with communication (differentiating between different people and voices, following a rhythm of conversation, finding topics of conversation boring). That's just the way it is. Neurotypical people who tell autistic people to pay attention and take an interest are not so much solving the problem as denying that it exists in anything other than the bad attitude of the autistic person. The problems adumbrated above mean that autistic people will experience difficulties interacting and communicating with others in social situations, something which creates social anxiety and which builds up a memory of bad experience, leading to anticipations of further difficulties when entering into social situations in future. Anxiety thus has a tendency to feed on itself in a vicious cycle of anticipation, experience, and confirmation.
These elements concerning the very real difficulties autistic people suffer with social anxiety seem incapable of being incorporated into the CBT model. The issue is of close personal significance to me. It was my repeated complaint that a constant 'psycho-social anxiety' lay behind the problems with physical health I had been suffering which led to suggestions of autism, followed by referral and diagnosis. To miss social anxiety as a result of missing the social, the environmental, and the relational is to miss everything as far as I'm concerned.
So what do the experts who 'miss everything' suggest?
One idea is that if you confront your fears then your fears will disappear.
If I had a pound for every time I've had people say that very thing … I heard it from family members, I heard it all through school, I continued to hear it from colleagues, coaches, employment advisors, everyone. The problem isn't that the view is wrong. I would venture to suggest that for the most part the advice works perfectly well for most people. Autistic people are not most people. And this is where such advice risks becoming positively harmful, damaging both mental and physical health. I can speak for myself, but I suspect what I say here will chime with the experiences of many autistic people. I, like most other autistic people, spend every day of our lives being confronted with things we fear. So much so that we would prefer not to seek further fears out. I became so proactive in confronting the things I was afraid of, because of failures and inadequacies, that I ended up spending decades fighting fear and failure. My extreme reading and writing programme does indeed represent a genuine interest in the subject matter on my part. But I have no doubt that it was born from years of academic failure, slumbering in the mediocre reaches of the school classroom and being the target of scorn and ridicule. I actually resented being called stupid, took the challenge head on, marched to the sound of the guns, and went on to earn an outstanding academic record. But … the idea that you overcome your fears by confronting them isn't necessarily true for autistic people, if it is true at all. I hated standing up and speaking in front of a class at school. I had nightmares of dread when having to prepare a little talk for my English exam. I had to do it three times. I was paralysed with fear the first time, the paper in my hand visibly shaking, my face turning red, with class mates all pointing and shouting in their hilarity. I didn't get better. I was as bad with the final exam as I was with the first. The same with my French oral exam, the teacher showing mercy and switching the tapes off until I regathered my senses. I think she felt me to be on the brink of a nervous breakdown. She gave me the good advice to ignore errors and simply press on, which did indeed help. But I could never shake off the sense that I was having to prove myself against some imaginary foe, having to be the best. It was the same at university. I never ever got used to speaking in tutorials or giving presentations. I felt so pressured to perform by the third year that I had a spell of blushing uncontrollably at the thought of having to speak. I wouldn't so much turn red as turn purple, unnerving one tutor so much that he thought I was having a heart attack. And on it continued. I dried up in my viva voce for my PhD. Literally dried, licking my lips as I attempted to answer the questions I was being asked. In the seven years of doctoral research, one thing dominated my mind above everything else: one day I am going to have to face fellow academics and speak. I never lost the great fear I always had of speaking in public, no matter how often I had done it and no matter how successfully I had done it. One academic colleague told me that no matter how nervous you are, the extent never shows. If you just keep going, people will neither notice nor care. She was right. But knowing this made no difference. I would prepare to the nth degree, revise and rehearse, wear myself out, perform, and collapse. And take longer and longer to recover as time went by. With my record I ought to have become a top-flight academic. I had not only confronted my fears over and again, I had seemingly conquered them – except that I was more terrified (and tired) by the end than I had been at the beginning. And the fears remained.
My point is this: the advice to autistic people to confront their fears is not good advice at all. There are reasons other than fear why autistic people struggle with certain things. The fears will not be overcome simply by confronting them. Fear is not the primary problem but an expression of a deeper issue. You will not get better processing speads and working memory by constantly entering into challenging social situations again and again. Sensory difficulties will not disappear and people will not become less boring by repeated encounter. Entering into challenging social situations and engaging in repeated social encounters won't resolve the problems that autistic people have with such things. On the contrary, forcing oneself to be constantly fighting fear will result in a chronic anxiety that is positively harmful to mental and physical health, risking chronic illness. The large numbers of late diagnosed autistic people who have developed chronic illnesses is significant. The presumption is that in confronting fear, fears will disappear. This is wrong with respect to autistic people. Rather than fears disappearing, you may find yourself involved in an endless unwinnable war, wearing yourself down until you give out.
Autistic people whose courage exceeds their wisdom will keep picking themselves up to go again and again into the fight, convinced that their fears will be overcome. Exhausted and defeated, they will then ask themselves why all their efforts haven't succeeded. Since the experts, backed with a wealth of science-based research say it works, they will start to question what they have done wrong and what is wrong with them. Far from overcoming problems, problems are likely to increase as a result. If this doesn't work for me then there must be something wrong with me.
As a result, anxiety can easily develop into depression. Beck's cognitive triad shows how depression becomes a cycle that reinforces itself by way of repetition.
Negative views about oneself (I am worthless) – negative views about the world (everybody hates me because I'm worthless) – negative views about the future (I'll never be good at anything because everybody hates me). The negative views about yourself, the world, and the future thus reinforce one another. Therapy based on this triad tries to counter the negativity. It seems reasonable to check negativity wherever it occurs and replace it with positive thinking. The problem is that this model fails to take account of a crucial factor in the autistic experience: society's negative views about autism and autistic people. This is absolutely key, and lays the inadequacies of models which focus entirely upon the individual (thoughts and feelings) bare. The social, environmental, and relational are key. It is society's views which are fuelling the cycle of negativity, something which the autistic individual alone cannot break. I have had direct experience of this. In dealing with various authorities and organisations I have asked for help, only to be treated as if I was slow, stupid, hard of understanding, and always in error. I once internalised all that external negativity, to the extent that I possessed a low self-esteem. I still have little social confidence, but now put this down to others 'out there' rather than to my own intrinsic qualities. I long ago learned to be self-contained and self-driven and to stand up against the poor opinions of others. Many autistic people who are vulnerable and in need may not be so bloody-minded. That is how easily autistic people can become sucked into a spiral of anxiety and depression. And fighting your fears is not a solution, merely the road to exhaustion.
Asdis summarises thus:
'The major problem for CBT is that it assumes disordered thinking which can be altered.'
Quitesimply, the premises are wrong, meaning that the outcomes will be other, and worse, than expected. The problem is that thinking behind CBT assumes what needs to be challenged with respect to the understanding of autism. Not only is the autistic way of thinking not always disordered, it may well be the right way for autistic people. The thinking behind CBT presumes that autistic people are in the wrong and stand in need of corrective intervention. The idea of similarly corrective transformations in the domains of the social, the environmental and the relational is never entertained. Ask an autistic person where he or she thinks the main problems lie and it is a racing certainty that he or she will say in the social, the environmental, and the relational. This is a war of numbers and percentages, of adaptation and accommodation, which pits the 'normal' well-adjusted and safely conformed majority against the minority of misfits.
CBT tends to be pushed as not merely the first line treatment when people ask for help, but the only one, other than medication. When I expressed problems with anxiety, with possibilities of depression, I had a brief ten minute phone call with a doctor, who cut to the chase by offering CBT or medication. Conversations with other people have confirmed to me that this is a common response (and here I am speaking generally, outside of the issue of autism). One person I had an exchange with was not merely cynical – he was more depressed than before he had asked for help, reconciled to the fact that all the authorities had to offer was CBT, CBT and yet more CBT. He said it would have been better had they offered him a rope to put around his neck. Having seen the creeping hopelessness among those in need, I pay close attention to the way that euthanasia is being normalised in an increasingly resource-strapped society. We will get all the positive reasons, of course, appealing to the prevailing individualism of the age – 'my life, my choice, my death' - my truth. This is fine for those who have the resources that bring the power of initiative, agency, and control – but what about the poor and the powerless, the weak, the vulnerable, the marginalised? The people who have their voices 'omitted' whenever they contradict the narrative? Who cares for les désespérés (for those who know the Brel song)?
Some people, many even, may confirm that CBT is a useful resource that is able to help many people. But that merely returns us to playing the percentages, valuing what broadly works for most people. Autistic people are not 'most people.' Normal is what most people do. Like most autistic people, I have been unfavourably compared to 'most people' my entire life, castigated for falling short of their normality. I'm not interested in 'most people,' I'm interested in the uniqueness of autistic people. To measure autistic people by the standards of the normal risks doing real harm. To be forced into doing things that are stressful and ineffective is not merely unhelpful but actually harmful. Sad to report the numbers of people who have described engaging with and accessing therapies on the NHS as a terrible experience. I treated my engagement as a learning experience. I was willing to appropriate anything that seemed relevant and useful. But I realised very early on that the therapy wasn't going to resolve the issues I had, for the very reason it didn't touch the roots of the problem. This, I should emphasise, was before it had even beensuggested that I was autistic, let alone diagnosed. It was the inadequacy of therapy with respect to what I defined as 'psycho-social anxiety' that led my doctor to suggest autism. So imagine going through that process of self-discovery, imagine waiting more than two years for assessment after referral, imagine finally receiving a diagnosis of Autism Spectrum Condition, then seeking help, only to be given CBT again!!! Since it was the failures of CBT to touch my problems that opened the road to the diagnosis in the first place, by what distorted reasoning can CBT be considered to offer a solution in light of diagnosis? I return to that favourite proverb: the most beautiful woman in the world can give only what she has. CBT is offered because, apart from medication, that's all they've got. And we are supposed to wear ourselves out making the most of it, even though we know it to be inadequate. To which I say a very firm and forthright 'no!' The nurse who led my cardiac rehab classes sensed my anxiety and indecision and told me straight to learn the word 'no,' use it when my instincts told me it was right to use it, and mean it, regardless of who it upsets. Your health is your responsibility – the upset could care less.
CBT just doesn't work for me. So I will say 'no' should it ever be offered again. I have fairly blunt views on therapy, frankly. I think therapy is a rabbit-hole. My instincts tell me to go nowhere near it. I know what brings happiness and contentment – relations with people who love and respect you, reiterated encounters with others, ties of kinship, friendship, and neighbourliness, productive work and a job you enjoy and which allows you to show your talents, hobbies and interests, doing things you enjoy, sharing experiences with others. The therapy industry is a putrescent growth that is parasitic on societal disconnection, division, and dissolution. We can't say that we weren't warned. Thinking of the depressed chap who expressed a preference for a rope over CBT, Emile Durkheim's Suicide from 1898 wrote the history ofthe modern age before the fact. Neither nous nor noose are going to get us out of this impasse.
Speaking from my own personal experience, I'd class CBT with yoga and mindfulness and meditation, disciplined mental practices that I find more stressful than the stresses that lead me to engage in such practices. I have a brain which receives everything at once, processing information and generating ideas at the speed of light. The solution that works for me is to practise an austerity with respect to environmental input and social interaction, cutting information down to the bare minimum. This enables me to control and modulate input in such a way as to make negotiating life a fairly calm experience. Admittedly, this approach could also be deemed anti-social, with peace of mind bought through minimal contact with the outside world. Some would see that less as coping with the world than withdrawing from it. But there are enjoyable social activities, too (even if these, too, are few and restricted). Enjoyable interests, productive activities, manageable contacts with others are key. And infinitely preferable to having someone analyse your thoughts and behaviours with a view to changing them. I don't need to have my attention drawn to my thoughts and my behaviours – I know what they are and, most importantly, I know why they are as they are. A professional analysing from the outside sees only the thoughts and behaviours, deems them wrong in some way, and demands their alteration. The functions they serve are missed entirely. I haven't missed the things the professional may suggest as superior. I have had those recommendations made many times before. There is a reason I rule them out – without substantial changes in the social, environmental, and relational spheres, those better thoughts and behaviours will be out of reach, forcing me to strain for the unattainable whilst losing the supports and stabilizers I have carefully crafted over a lifetime's experience. Problematic thoughts and behaviours should be changed, but talking about them and working through the worksheets is hard work to no end in changing nothing.
I hope these words give some idea what CBT feels like for autistic people. Those who suffer from anxiety will know about the problem of being caught endlessly in the fight and flight response. It's the same for autistic people, with this difference: autistic people process information differently. The autistic brain works differently, meaning that autistic people can struggle to know what they are sensing and feeling and with communicating these adequately by way of thoughts and words.
Asdis takes a look at what CBT asks autistic people to do.
1.To begin with, autistic people have to try to survive the sensory stimuli (sounds, lights etc.), whatever is going on in their environment, the context in which their lives are lived, the things they have to do.
2. Find out what you are feeling and put words to it
3. React accordingly to CBT - if you are happy and calm, then you don't have to do anything. But if you are anxious, then go to CBT and do what CBT tells you to do. However, if you can't figure out what you are feeling and don't know what to do, then what? CBT doesn't actually tell you.
4. Find out what your bodily sensations are.
5. Figure out what you are/were thinking - by this time, you have had many other thoughts and had to process so much information.
6. And then you have to remember what you were told to do in therapy. All of this puts immense pressure on processing speed and memory! The challenges to autistic people are not considered anything like as much as they ought to be. Autistic people have their familiar routines and patterns and don't like to be removed from them. They can find new instructions and practices immensely challenging, not to say disorienting, putting immense strain on intellect and energy. CBT puts much more strain on autistic people than non-autistic people because of the very different way that the autistic brain works. Autistic people process information very differently. CBT puts an exorbitant pressure on the autistic person's processing speed and working memory. And to what end?
If you remember what to do, then do it. But if you don't remember, then what?
We return to the fact that CBT is all about evaluating your thoughts.
That may sound eminently reasonable to eminently reasonable people. But it completely scotomizes the autistic experience. To be told to re-evaluate your thoughts will likely incite scepticism and trepidation among those who have been used to having their beliefs and views doubted by others from the moment they could speak. Autistic people have constantly been told that their thoughts are mistaken in some way and stand in need of revision. They will be confronted with CBT and simply ask: 'so what's new?' Here we go again. It should come as no surprise to learn that many autistic people in therapy describe questioning their thoughts and feelings daily, claiming that it incites anxiety. It can be appreciated, then, that a CBT which emphasises that those in therapy re-evaluate their thoughts should be felt as more harmful than helpful. Autistic people are used to constantly being doubted by others and to constantly questioning themselves as a result. This debilitating doubt and questioning is the common experience of autistic people. I'm one of life's hoarders. I would keep every scrap of information concerning my life, going back to school days. A friend noticed my tendency in discussion to defend any views I offered by not only citing evidence from the past, but producing it physically in hand. 'I have the proof,' I would say. 'I can back it up.' It's as though I was constantly having to validate my experience. Autistic people are accustomed to having their views constantly doubted. Sensory issues can lead to complaints over temperature, noise, lighting, too much of this, too little of that, too high, too low, with those without issue pointing out that there is no problem and it is all in the complainants mind. This constant doubting on the part of others dovetails nicely (or nastily) with a constant self-questioning. This endless doubting and questioning with respect to personal experience quite easily leads to anxiety. It can also increase a tendency to blame oneself for one's misfortunes. Constant doubting and questioning is anxiety provoking – am I right? Am I doing this right? Is this supposed to happen? The autistic person is always checking himself or herself up against some external measure and falling short, fuelling their anxiety. They thus seek therapy, only to find the therapist telling them that they should question themselves even more! The result is increased anxiety and self-blame.
CBT is often about changing people to meet some impossible and inappropriate external standard of normality. If therapy is to be worth anything, it really should be about identifying and nurturing a person's own healthy potentials and unique abilities. Again, the critical point is not merely that CBT is a useless waste of time and energy but that it is positively harmful. Some of the things that CBT may target to work on and change may well be part of an autistic person's natural neurology and natural being. These things are not errors which stand in need of correction, but the autistic person's core being which needs to be developed. For this reason, many autistic people may come to feel that CBT is an unsympathetic tool by which others seek to change them.
There are other problems which the focus on thoughts and feelings entails.
The special interests of autistic people are not aberrations which stand in need of correction and elimination. A special interest is part of autism. To seek to eliminate a special interest is tantamount to identifying autism itself as an aberration to be eliminated. We see here the harm that the impairment model of autism can do, identifying autism as a negative condition standing in need of remedial action from the outside. A special interest is not something that autistic people can simply put an end to. Once you have a special interest, you have a special interest. It is a much more profitable use of time and energy to see how that interest can be channelled productively than to bring it to an end. Plus, the urge to have a special interest never actually goes away. Special interests become a problem when they absorb a person's time and energy to such an extent that they come to neglect the essential affairs of everyday living. But in themselves they are not problems demanding resolution.
Indeed, having autistic people focus on their thoughts and feelings can become detrimental to the extent that they may be inclined to make this their new special interest. Too much of anything is always a problem, and the whole question of special interests in autism arises around the sense that too much is never enough for the autistic mind. If you have a decade to spare, ask me about Elvis or Francoise Hardy or Liverpool football club or my collection of mugs, vinyl LPs, books … I would say that making autism my new special interest is about the most autistic thing I have ever done. I receive a diagnosis of autism and my first reaction is to start to read and write on autism.
And that's the problem – a focus on thoughts and feelings cannot but risk becoming 'too much' with an autistic person, becoming a new special interest. Too much focus on thoughts and feelings can, therefore, have a detrimental effect. Therapy can either trigger this obsessive tendency or make it worse, with feelings, thoughts, sensations or mental health becoming a new special interest that therapy was supposed to release the autistic person from. Those in therapy will come to think about nothing else, revisiting every past situation they were ever anxious in. Far from overcoming anxiety, this relentless focus on thoughts and feelings can it. The search for problems can become obsessive and hypochondriac. In fine, it doesn't always help to focus on feelings and thoughts.
There are other problems with CBT. A wrong diagnosis means a wrong model
and a wrong treatment.
Differential Diagnosis
This is most clear in the case of depression vs burn out. In depression, behavioural activation is an appropriate response: we want people to be active, do things, be positive, go outdoors, meet people, engage in pleasant experiences. In a burnout, however, the appropriate response is rest in aid of recovery. This is a big issue for autistic people given the extent to which autistic burnout is
frequently misread as depression (I have had this on at least four occasions. In pursuing the matter further, I find that doctors are happy to think that the issue is resolved once it becomes clear that
I am not suffering depression and that there is no threat of harm to self or to others. Depression ruled out, no problem remains. I have learned to rest and recuperate in my own time, dealing with adverse forces as best I can. Again, the societal, relational, and environmental changes required for proper resolution are beyond the scope of any individual and require collective institutional and social action. I am toying with the idea of an autistic mutual aid society aiming at a self-socialisation from below, an autistic grassroots powering from below the institutional action that is required above. Then again, that was once my dream for socialist transformation, before politics became absorbed in the mad mechanarchy of the world. Maybe tomorrow.
If burnout is diagnosed as depression, then the wrong treatment will be used, causing untold harm. Autistic people will be told to be active and do things when they will need to be resting and recuperating; they will be told to go out and be active when they need to withdraw a while.
Then there is social anxiety vs the autistic social style.
Autistic and non-autistic people socialize and converse in ways that are very different. Those who do not understand this will repeatedly send autistic people into social situations which they find immensely challenging and will struggle to cope with. What makes matters worse is the prevalence of the view that becoming comfortable is merely a matter of socialisation and normalisation. As with the idea of confronting our fears makes them go away, so repeated engagement will make those uncomfortable with social situations more comfortable. That's simply wrong. Far from going away, the anxiety will simply increase. Once more, without the right diagnosis, CBT can make a problem much worse. Having exploded or broken down more than a few times in public places, I can confirm that ideas of normalisation by way of reiterated social encounter can push an autistic person to the brink and beyond. It leaves 'normal' neurotypical others perplexed. It is for them to make the effort to understand and change their behaviours, not the autistic person.
That brings us to the issue of Anger vs Meltdown.
Those who see the problem as one of anger advocate self-control. This is not merely wrong, it is profoundly ignorant and insulting. I show a self-control that is above and beyond the call of social duty. I have been a martyr to self-control, suffering severe pain every minute of certain social encounters. Pushed well beyond endurance, I will finally snap, only to have others think I have anger issues. They need to give their heads a wobble before I wobble it for them. OK, I can be a little angry at times. But, as Tony Attwood writes, at the root of the apparent explosion of anger is sadness. Sadness at being misunderstood, yet again; sadness at the way others put you unthinkingly in situations that are severely stressful; sadness at the way others encroach on your time and space when all you are doing is trying to survive. Experts and professionals will advise people on how to manage their anger when in truth they don't have anger issues at all, they have sensory difficulties which, if unchecked, can lead to meltdown. Neurotypical people well-adjusted to society will see it as an anger issue; autistic people will tell you straight that it is a problem with sensory mixing and overload.
Then there is Phobia vs Post Traumatic Stress Disorder.
The way to dissolve a phobia is to expose people to a danger that isn't really a danger; this is the last thing to do to someone suffering from PTSD.
Getting the diagnosis right matters. This quote explains how differential diagnosis matters:
“There were multiple telephone assessments, this is an issue as I'm quite 'flat' and to-the-point, without NVCs (non-verbal communications), that 'dullness' is usually taken to be depression, it's not, that's my normal.” (Sonny Hallett, in the Scottish Survey of Autistic Adult's experiences of counselling, 2020).
The differential diagnosis between the autistic and the normal matters. Autistic people are frequently diagnosed as depressed when the problem is something else, a problem which is routinely ignored, because autistic people are not listened to, on the presumption they simply don't understand all that ails them. The presumption is that non-autistic people are better at judging the problems of autistic people, with the result that autistic people get the wrong treatment.
Asdis thus concludes that CBT can actually be 'slightly harmful.' In light of all that she has said leading up to this point, the word 'slightly' strikes me as a massive understatement. She made this statement in commenting upon one of the slides. The slide in question actually suggests a potential harm that is much more than slight:
Therapy based on these models can:
Be unhelpful, when models point to the wrong targets in therapy;
Increase problems, when models point to the wrong targets in therapy;
Increase self-blame, with people blaming themselves when the models don't work, as a result of the above;
Increase anxiety, because situations never get easier, and because it teaches people to doubt and question their thoughts and feelings.
Autistic childhood experiences
Asdis next discusses some common childhood experiences for autistic people.
The examples she gives will be very familiar for autistic people.
The child complains of too much noise (at home, in school, wherever).
'It is too noisy' means 'I can't handle the situation.'
The complaint refers to noise but is actually a plea for help.
The adult focuses on the noise and says 'no, it isn't noisy.' That translates as 'you do not need help.' The need for help is completely missed.
The reply of 'no' means that your view of too much noise is mistaken and there will be no help forthcoming. The child will find his/her needs denied and will receive no help.
As a result, the child will be repeatedly forced into difficult situations by adults who claim that they are easy. The child's needs and feelings are ignored. The child comes to doubt himself or herself. With every refusal of help, the child learns to cease asking for help. There is little point in revealing your vulnerability by asking for a help that never comes.
The child says 'I can't do [something]'
The adult says in response: 'yes, you can!'
The response is meant to be encouraging. But the child may well be a better judge of his or her capabilities, leading to a distrust of the adult's view. The child understands that the adult neither knows nor tells the truth. Telling someone that they can do something may be encouraging, but it risks ignoring the difficulties that those complaining are struggling with. (I was repeatedly told to have more confidence. I wasn't lacking confidence, I was lacking certain abilities in face of certain obstacles. I learned to ignore those who scolded and encouraged me in equal measure and take control of things, at my own time, in my own space).
Another example:
The child does something unacceptable in an anxiety attack or meltdown.
The adult says 'try to control your anger.'
This means that the child is not taught the right name for the emotions. The wrong diagnosis leads to the wrong solution. The problem was not the result of anger, but of anxiety or a meltdown. This being so, the solution is not greater self-control or anger management on the part of the child, but a concern to prevent the situation from arising in the first place.
I have had this, and as an adult, too. I once stormed out of an office as a result of the impossible pressures being layered upon me. I had issued constant complaints and pleas and objections, giving clear indication of stress. It was all ignored. I exploded, stormed out, shook the lift on the way down and attempted to put my boot through a concrete wall. I suffered a nervous breakdown and spent a month away. I was eventually invited back, with a caution to 'watch that sensitive nature of yours.' I should have issued the caution back that it was for them to do precisely that, because the problem was not one of anger, it was of sensory stress in a social situation, leading to anxiety and meltdown. Instead, the presumption was that I had anger issues and that I should make the effort to control my feelings and emotions. If I really did have anger issues, I would have exploded violently every minute of the time I spent in that office. Instead I bottled all that stress and frustration up and
internalised the difficulties so much that it resulted in meltdown and nervous breakdown.
The result of all this is that autistic people, from childhood to adulthood, become accustomed to being constantly gaslighted, their protests and pleas unheard, their experiences denied, as a result of their feelings and sensations being labelled in neurotypical terms. They learn that it is pointless expressing their needs and thoughts, that people neither listen nor understand, that people cannot be trusted, that people obstruct and hinder them rather than help, that people don't tell the truth, that people are forever telling them that they are wrong and are to blame for the things they complain of.
They learn that people cannot be relied upon and that they are on their own and have to rely on themselves.
Autistic people have limited resources with which to respond to this negative assessment of others, and the negative experiences they suffer. The main response is to learn to survive by way of masking, pretending to be neurotypical. But survival on these terms comes at an exacting price, since it means that autistic people lose their own authentic identity in acting out a social role in light of others' expectations. Whilst this means that there is less gaslighting and greater acceptance on the part of neurotypical people, it creates greater anxiety and a range of emotional problems. The other main response is to remove yourself from social encounters and situations, isolating yourself in order to avoid the adverse consequences of miscommunication and misunderstanding. Again, this is survival bought by loss, the loss of a flourishing social existence.
Autistic people, taught to deny and repress their needs, feelings, and emotions, have been taught to mask in order to survive. They thus learn to bury their authentic selves, to lower expectations, to be accommodated – they survive rather than thrive. And they have a much diminished capacity to respond to adverse events. At best, they are just getting by, waiting for adversity to strike and lay them low. Such is life. As the title of an album by one of my favourite bands, It's Immaterial, has it: 'life is hard, and then you die.' Inthe meantime, you find yourself constantly asking why things are constantly happening to me. People who point out that such events happen to others send your spirits plummeting even further, as a result of feeling that your voice is being denied. The tiniest of events can have a huge impact on people accustomed to denying themselves their needs, hopes, and desires. Such people don't have the inner resilience they need to assert and affirm themselves, for the reason that they have lived in denial of their core being and don't know how to be themselves. They also tend to be withdrawn and isolated and so lack the social support and stabilizers which would encourage them to come out of their shells. So a relatively small event may be all it takes to set off an explosion that can lead to autistic burnout. A succession of such events can lead to pessimism, isolation and withdrawal, negativity and bitterness, a hatred towards the world, life and others. Despairing of a solution, people choose to isolate themselves. This does nothing to overcome the reasons driving a life-denying negativity, but is deemed necessary to survival the weight of adverse circumstances. Such people give up on dreams of flourishing in order to survive.
People thus become locked into patterns of behaviour which are geared to long term survival, even if they are essentially and ultimately a denial of much that makes life worth living. A cursory examination from the outside reveals such behaviour to be much less than optimal from the standpoint of health and happiness (defined in terms of flourishing). CBT is introduced into the scene as short-term fix-everything strategy, targetted upon the things to be changed, at the end of which a person is restored to health. There is, however, a clash here between the inner and the outer, the long-term and the short, the deep and the shallow. Many autistic people have become accustomed to their long term behavioural patterns. Whilst many of these could be deemed bad habits to be broken for healthy living to be possible, many of them are not, in being attuned to an autistic person's natural neurology and being. There are also the survival strategies discussed above. To undermine and remove these without understanding why they are there in the first place can do untold harm, effectively disarming the autistic person in face of adverse forces. The absence of inner resilience and social support and stabilizers forces autistic people on the defensive. To remove the defences without at the same time furnishing autistic people with the means by which to go on the offence in the world is to deprive autistic people of their survival capacity. Those long term survival behaviours are not simply errors to be targetted and transformed. Autistic people develop a number of long term survival behaviours as a perfectly rational response to growing up in an environment that is experienced as difficult to negotiate. Those who are adjusted to that environment and can meet its demands and requirements easily will understand those survival behaviours as an anthropologist understands an alien, ancient culture; they may acquire external knowledge, but they will be entirely lacking innate knowledge and understanding. Autistic people will feel threatened and weakened in seeing their defences being targetted for removal and transformation. We are dealing with habits, mentalities, practices, and modalities that have been developed and honed over a long period of time, coming in time to be adapted to a person's essential being. An autistic person will have become adapt at masking, trying over time to make the mask fit the inner person as far as possible. Autistic people will most likely have been bullied at school for being 'different' in some way. That 'difference' doesn't disappear after school. The feeling of being different is always present, leading an autistic person to rely on responses and resistances developed under attack. The autistic person will evince an ingrained defensiveness towards others and the world. The last thing that is needed is some expert or professional from some here-today, gone-tomorrow institution targetting an autistic person's protective shell as responsible for living a less-than-optimal life. The shell is not the problem but is the response to a deeper problem. Autistic people will have beliefs, views, habits, and practices which they hold close as part of their essential being, born of existential experience. Set against this background, CBT emerges as something that targets things that are happening at the surface level, going on to identify the autistic person's behaviour as the target of transformation, without thinking why these things are happening and how autistic behaviours have developed in response to them. Missing entirely is a depth analysis of the societal, the environmental, and the relational. CBT, in common with other external interventions and manipulations, makes a sharp division between the subjective and the objective, presumes the unchangeable nature of the wider world within which the autistic person must participate, and focuses on changing the former. I've seen this before in the employment field, with macro-economic forces simply left unchallenged and unchanged whilst all the pressure for action and initiative is placed on the discrete individual. I had extensive experience of employment agencies pressurising the unemployed in an age of mass unemployment and saw behind the futility of the ostensible purpose of such organisations to see the political and ideological motivations at their core. The unemployed were being targetted and exhibited in order to set an example and establish a threshold to those in work, getting them to put their noses to the grindstone and accept their lot without complaint. It had nothing to do with developing the ambitions and talents of the unemployed – the world was not for changing, they were. I see the same jaundiced mentality all over CBT and other therapies, all concerned to reconcile people to 'the real world,' a real world that autistic people know deep in their hearts not to be attuned to their hopes, dreams, and desires. Risking comparisons with Oskar in Gunther Grasse's The Tin Drum, retreat and withdrawal seems the more rational option. Autistic people may be inclined to undertake CBT, for the reason that no other help is forthcoming. But many are turned off. I find the whole area of therapy unappealing for any number of reasons – experience, yes, but also the sense of futility in face of familiar ideological and
bureaucratic claims and interventions. Abandoning attempts to transform the social and environmental context – for such would be politics - the authorities and institutions have nothing other than a focus on transforming the discrete self. If experts and professionals are not going to pay attention to the cogent reasons why autistic people think and behave as they do, then why should autistic people pay any attention to them. Because they don't see the reasons behind long term survival behaviour doesn't mean that the reasons aren't there. Ultimately, I get the distinct impression that therapists are doing no more with autistic people than they do with neurotypical people. My suspicions were ignited the moment I was offered exactly the same treatment for anxiety I had been offered before being diagnosed with Autism Spectrum Condition. Therapists seem to be just recycling the same things from the same old box of tricks. I can remember a family holiday in Blackpool. The owner of the hotel also owned another hotel in the next block. The TV kept breaking down. The owner replaced it after a couple of days. Within a day the new TV broke down. We actually met people from the nearby hotel. Their TV had also broken down. The hotel owner had simply swapped the broken TV sets between us rather than supply a new and working set. By the time we realised we had been had it was the end of our stay. Lacking a solution, the owner had played for time, offered false hopes and promises with which to keep us going, and got away with it. He no doubt carried on swapping his broken TVs in the future. The experience of being constantly gaslighted is a familiar one for autistic people. You don't so much get resigned to it as resigned to a life you expect to get worse rather than better. Because it's not the first time you've been had, it's not even the thousandth time, it's countless and endless. And then you discover that therapy, the supposed key to a golden future, is just another form of gaslighting.
I continue these reflections in a second part
Autistic Reflections on CBT - Part 2
https://site-5960281-5807-1785.mystrikingly.com/blog/reflections-on-cbt-as-an-autistic-person-part-2
