Eoin Stephens
One of the common triggers for an adult to explore whether they might be autistic is till the discovery that one of their children is autistic (as being autistic seems to have a largely genetic basis), but social and mainstream media are also increasingly leading many people who have always felt very different to reflect on this possible explanation. ADHD is another area where there is a very rapid jump in the number of adults who are realising that this way of understanding themselves might be helpful in making more sense of their life experiences and struggles. Many will need informed professional help in doing so. Autistic people, and those with ADHD (or both together), especially when growing up without knowledge of being ‘neurodivergent’, are particularly vulnerable to mental health problems, and the suicide risk amongst these populations is much higher than in the general population (Kirby et al, 2019). When they seek therapy, allowance needs to be made for their neurodivergent personality, communication style, perspective, & difficulties. In exploring the implications for what happens in the therapy room, I’ll focus mainly on autism in this article, as it is the area where I have gained the most experience in the therapy room and the training room over the last few years.
One question is what explains this jump in numbers. The estimated prevalence of autism in children worldwide has been steadily growing, and at present is estimated to be at least 1 in 50 (Hess, P., 2021). Current research largely points away from any actual increase in prevalence as an explanation for this, and instead seems to suggest that improved provision of assessment services is the main relevant factor (Zeidan et al, 2022). This would imply that prevalence in the adult population should be little different from the figures above. Where then have all the unidentified autistic adults been, and why are we just becoming aware of them now?
First of all, it was assumed until quite recently that autism was vastly more common in males than in females. This became something of a self-fulfilling assumption, as girls were then rarely given an assessment. The current growing realisation that autism is nearly as common in girls/women as in boys/men (perhaps even equally as common), is one of the most striking aspects of the extraordinary phenomenon we are exploring here (Flegg, 2021).
Secondly, many adults who discover they are autistic have previously received diagnoses (which may turn out to be misdiagnoses, or can be co-occurring problems along with being autistic) that hid the fact they were autistic. Common examples of these are Intellectual Disability, Obsessive Compulsive Disorder, Anorexia Nervosa, and Borderline Personality Disorder (Fusar-Poli et al, 2022).
Finally, as we will see below, many autistic people learn to ‘mask/camouflage’ their differences in order to protect themselves in a largely unaccepting world. This is a survival/coping strategy which helps somewhat in the short-term, but which has many kinds of negative fallout, including the fact that it successfully hides their autistic nature from discovery, even self-discovery.
Psychological Aspects
So, what is this autistic nature; what is it to be ‘autistic’?
A common metaphor used to answer this question is that autism is a kind of innate psychological/neurological ‘operating system’, a minority or ‘atypical’ one like the OS of a Mac computer as compared to that of a Windows-based computer. This perspective highlights autistic differences in information-processing in relation to sensory information, general information, and specifically social/interpersonal information.
I’ll say more about what these differences might be below, but first of all a couple of general points:
Many attempts have been made (and are still being made) to define the core nature of the autistic ‘primary operating system’, but without wide agreement being reached to date.
Some of the most widely discussed explanatory theories are:
The first one on the list led the field for many years, but its basis has been strongly questioned in recent years; the last one on the list has been gaining some ground recently, but it remains to be seen whether any ‘essentialist’ theory of autism is even needed – the strongest consensus currently is that autism as a phenomenon is in fact rather heterogeneous in nature, without any single core essence.
So how is being autistic defined these days? What sort of criteria are we looking at? Well, the main characteristics of autistic neurodivergence are still under discussion, partly because of the attempt to leave behind the old deficit-based definitions, and partly because much new information has emerged in recent decades about the lived experience of autistic people.
First, let’s look at a highly summarised version of the influential, American Psychiatric Association DSM5 Criteria for Autism Spectrum Disorder (APA, 2013). The language is very much deficit-based and child-focused; I’ll present some alternative, less negative language. Behind the stigmatising language, the areas that the DSM outlines are still widely agreed to capture most (though not necessarily all) of the themes of autistic difference.
The criteria (seven in total) come in two sections. One specifically focuses on social/interpersonal characteristics and consists of three criteria – all three must be met for a diagnosis. The other focuses on more general characteristics of behaviour and interest and consists of three criteria – any two of them can be met for diagnostic purposes.
Section 1:
Persistent deficits in social communication and social interaction, i.e. in:
Differences/difficulties in social communication and social interaction are very much a core part of the experience of being autistic, and the specific areas of social-emotional reciprocity, communication via nonverbal behaviours, and the development and maintenance of relationships can often give rise to a sense in autistic people that “everyone else got a copy of the social instruction manual except me”. But, within the neurodiversity paradigm discussed below, these would all be seen as differences, not ‘deficits’. A lot of the autistic clients that I work with would say that they “do friendship & relationship differently, not wrongly”. Understanding this difference is crucial to the therapeutic relationship, as we will explore later in this article.
Section 2:
Restricted, repetitive patterns of behaviour, interests, or activities, i.e.:
A possible need to stim, preference for a strong element of structure/planning in daily life, passionate interests, and sensory sensitivity, are again an accurate take on some of the less socially focused aspects of being autistic, but language such as “stereotyped”, “insistence”, and “highly restricted” are felt by many autistic people to be nothing short of insulting.
It is worth saying a little bit more about these four areas (which I sometimes describe as the 4 S’s), using more respectful terminology:
The most well-known function of stimming behaviours is to manage stress and anxiety, but for autistic people stimming has many other possible functions, e.g. for enjoyment, to manage sensory input, to express/communicate emotions, and/or to help with information-processing.
Some other features of the autistic nature that have been identified in recent years are:
The other crucial point is that our rapidly-growing new client population can’t just be described as “autistic adults” – the phenomenon we need to respond appropriately to is the growing number of masked, late-discovery autistic adults. So we need to understand the secondary, acquired characteristics of this group, the psychological damage, the compensations and camouflaging, the high level of mental health problems and suicidality. The term ‘masking’, which was already mentioned above, refers to a much deeper and more damaging process than merely putting a metaphorical mask on and off as necessary. For an autistic person to survive, self-protect and belong (at least to some extent) requires an enormous amount of over-adapting, self-censoring, over-compensating, camouflaging, mimicking, impression management, self-deprecating, and other similar strategies. Ongoing, severe masking generally leads to social anxiety, low self-esteem, self-criticism, and shame. The ongoing effort of masking takes enormous energy, which frequently leads in turn to burnout.
The ‘Autistic Burnout’ described in the literature is not fundamentally different in nature from the burnout experienced by anyone else – the difference lies in the fact that the causes can be much more mysterious than in a typical case of burnout, because the autistic person will be seen (by themselves and others) as not necessarily under any more stress than many people around them. As discussed above, this is of course a crucial error, and can unfortunately lead to an autistic person pushing themselves even harder, and blaming themselves, rather than realising what is really happening and taking appropriate steps where possible (Rose, 2018).
The most basic thing to grasp is that is almost always traumatic, in the developmental sense, to grow up with the confusion of being autistic (or otherwise neurodivergent), especially without even knowing that this is what is causing your confusion and the mismatch with the people around you. We therefore (especially as therapists) need to assume the likelihood that Complex PTSD will be part of the adult autistic client’s presentation.
Social/Political Aspects
The best way to understand the neurodivergence/autism phenomenon from a social/political perspective is to look at the various models/paradigms that have been developed over the years.
The Medical Model.
This model (based on DSM and similar psychiatric criteria sets) has been the dominant model for many decades. It might be more accurately described as the medico-legal model, as getting a formal diagnosis has huge implications for such things as applying for exam accommodations in college, or accessing support services for children. As we saw above, this model clusters around such concepts as deficit, disorder and disability, which are increasingly being seen by most autistic people as at best only partly relevant to their experience as a minority group. Hence, this is increasingly becoming an area of social and political controversy.
Further controversy arises from the fact that the DSM divides the diagnostic possibilities into the following three levels:
Level 1: Requiring support (equivalent to what was formerly called Asperger’s Syndrome)
Level 2: Requiring substantial support
Level 3: Requiring very substantial support
These categories are often described as high-, medium- & low-functioning ASD, language which is widely criticised for its potential rigidity (carrying with it the danger of self-fulfilling prophecy), and for an over-emphasis on ability to fill an employment niche in the modern western capitalist economy (see e.g. Bottema-Beutel et al, 2021; Penot, 2022).
The Social Model of Disability.
Some use of the framework of disability is acceptable to many autistic people. Disability can be seen as crucially different from a disorder/deficit model if it is framed within the Social Model of Disability (Woods, 2017). This paradigm argues that disability is about more than just individual impairments or differences, but is equally or more about whether the environment is designed to accommodate a variety of people with different needs (e.g. ramps and elevators for wheelchair users). The implications of this line of thinking are that improvements in societal acceptance and environmental accommodations would greatly lessen the experience of being disabled for autistics and other neurodivergent people.
The Neurodiversity Model.
This is the most widely-supported paradigm among autistic people nowadays. It proposes that being autistic should primarily be seen as a difference, as a minority way of experiencing and processing the world that can have both strengths and weaknesses depending on the context. The term ‘neurodiversity’ was coined in the 1990s by sociologist Judy Singer, and also by the writer Harvey Blume (Silberman, 2015). Singer, as the mother of an autistic daughter, discovered that she was autistic herself, and by participating in pioneering online discussion forums about her own and other people’s emerging experience, she proposed the term to describe conditions like autism, ADHD, dyslexia, and others, with a view to try and shift the discourse away from terms like disorder and deficit.
As it has developed, the word neurodiversity can refer to a few different but connected ideas:
The different, and difficult, experiences that autistic/neurodivergent people have by virtue of being a discriminated minority are a reality that therapists need to understand and validate when working with autistic and otherwise neurodivergent clients.
Which brings us into the therapy room.
Therapeutic Aspects
There is no reason, so far at any rate, to see any one therapeutic approach as more suitable than others for autistic clients. At this stage the best assumption seems to be that all major approaches can be used in working with autistic adults, but that all or most may need some slight adjustments where necessary. My own experience, and some of the literature so far, would suggest that at least two influential schools of thought, Person-Centred Therapy & Cognitive-Behavioural Therapy, have plenty to offer when working with autistic clients. However, some possible concerns can also be raised about each approach.
Give that a particularly crucial aspect of therapy with autistic/neurodivergent clients is establishing trust and rapport, the Core Conditions of the Rogerian Person-Centred approach (Empathic Understanding, Unconditional Positive Regard, Congruence), would seem to be at least as valuable/essential in working with autistic clients as with any other client, if not even more so.
(See e.g. Cromar, 2019). However, there may also be some possible concerns in relation to using Person-Centred Therapy with autistic clients:
CBT might address some of these concerns, and has a longer history of working with autistic clients than any other approach (see e.g. Weston et al, 2016; Gaus, 2018). In my own clinical work, I have found that elements of standard CBT, Dialectical Behaviour Therapy, Acceptance & Commitment Therapy, Compassion-Focused Therapy etc can often be useful and welcome with autistic clients, as these approaches tend to be:
However, there are possible concerns here also:
In the end, the “autism-informed” therapist simply needs to be able to take autistic neurodivergence into account, and to adapt to the particular ways autistic people process the world, especially when high levels of masking and mental health damage are also taken into account.
Some common myths, sometimes still perpetuated even in the therapy world are that autistic people are unemotional, unsociable, and unempathic. These assumptions have been found to be false once they were closely and properly examined (e.g. Gernsbacher & Yergeau, 2019). What is true is that autistic people often have different emotional reactions, different social needs/preferences, and different ways of expressing empathy. The autistic British psychologist Damian Milton has proposed a theory of the “Double Empathy Problem”, in which he suggests that the difficulty with empathy some people experience is “cross-cultural”, in other words, autistic people and non-autistic people can often mutually find each other difficult to understand and empathise with (Milton, 2018).
This has obvious relevance to the therapeutic working relationship, implying that therapists may need to make some adjustments/accommodations to quite fundamental aspects of how they interact with an autistic client, for instance:
Conclusion
Working with autistic/neurodivergent clients can be a challenging but rewarding experience for therapists. Understanding the differences in the autistic operating system, making adjustments in therapeutic approaches, and acknowledging the unique experiences of discrimination faced by this population are crucial for effective therapeutic interventions.
This is a growing area of need for clients and of opportunity for therapists. A lot more training is needed over the next number of years, both at CPD level and at earlier stages of counselling/psychotherapy training.
References
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). APA.
Baron-Cohen, S. (1995). Mindblindness: an essay on autism and theory of mind. Boston: MIT Press/Bradford Books.
Bottema-Beutel, K., Kapp, S.K, Lester, J.N., Sasson, N.J. & Hand, B.N. Avoiding Ableist Language: Suggestions for Autism Researchers. Autism in Adulthood Volume 3, Number 1, 2021.
Cromar, L. (2019) A Literature Review Exploring the Efficacy of Person-Centred Counselling for Autistic People. Person-Centred Quarterly.
Embrace Autism (2018-2022). https://embrace-autism.com/autism-tests/
Flegg, E., 2021. https://www.independent.ie/life/health-wellbeing/mental-health/women-and-autism-i-was-50-when-i-realised-i-was-autistic-41138868.html?
Frith, U. (1989). Autism: Explaining the enigma. Oxford: Blackwell.
Fusar-Poli, L., Brondino, N., Politi, P., & Aguglia, E. (2022). Missed diagnoses and misdiagnoses of adults with autism spectrum disorder. European Archives of Psychiatry and Clinical Neuroscience, 272(2), 187-198.
Gaus, V.L. (2018) Cognitive-Behavioral Therapy for Adults with Autism Spectrum Disorder, 2nd ed. NY: Guilford Press
Gernsbacher, M.A. & Yergeau, M. (2019). Empirical Failures of the Claim That Autistic People Lack a Theory of Mind. Archives of Scientific Psychology, 7, 102-118.
Hess, P. (2021) https://www.spectrumnews.org/news/u-s-autism-prevalence-inches-upward-as-racial-gaps-close/
Kirby, A. V., Bakian, A. V., Zhang, Y., Bilder, D. A., Keeshin, B. R., & Coon, H. (2019). A 20‐year study of suicide death in a statewide autism population. Autism Research, 12(4), 658-666.
Koenig, K., & Levine, M. (2011). Psychotherapy for Individuals with Autism Spectrum Disorders. Journal of Contemporary Psychotherapy, 41, 29–36
Milton, D. (2018). https://www.autism.org.uk/advice-and-guidance/professional-practice/double-empathy
Murray D., Lesser M. & Lawson W. Attention, monotropism and the diagnostic criteria for autism. Autism. 2005 May; 9(2):139-56.
Penot, J. (2022) https://www.psychologytoday.com/us/blog/the-forgotten-women/202208/why-many-people-autism-dislike-functioning-labels
Rose, K (2018). https://theautisticadvocate.com/2018/05/an-autistic-burnout/
Sandoval-Norton A.H., Shkedy G. & Shkedy, D. Long-term ABA Therapy Is Abusive: A Response to Gorycki, Ruppel, & Zane. Advances in Neurodevelopmental Disorders (2021) 5:126–134.
Silberman, S. (2015). NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently. Avery.
Weston, L., Hodgekins, J., & Langdon, P. E. (2016). Effectiveness of cognitive behavioural therapy with people who have autistic spectrum disorders: A systematic review and meta-analysis. Clinical Psychology Review, 49, 41–5
Woods, R. (2017). Exploring how the social model of disability can be re-invigorated for autism: in response to Jonathan Levitt. Disability & Society, 32(7), 1-6
Zeidan. J., Fombonne, E., Scorah, J., Ibrahim, A., Durkin, M.S., Saxena, S., Yusuf, A., Shih, A., & Elsabbagh, M. (2021). Global prevalence of autism: A systematic review update. Autism Research, 15, 778–790.
Some suggested reading:
Eoin Stephens
BA Psychology, Dip Counselling, MA Cognitive-Behavioural Counselling, MIACP, MACI.
Eoin is an Irish counsellor/psychotherapist and trainer who has worked in the areas of disability, addiction treatment, education & training, and private practice for over 30 years, using a humanistic, pragmatic approach to CBT. His work is currently focused on understanding the problems faced by autistic adults, and their specific therapeutic needs. He is autistic himself, having made the discovery in 2012.
Eoin’s website is: www.autisminformedtherapy.com
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