The Pressing Need for Therapists to be Autism-Informed

by Eoin Stephens

“Autism has just been in flux for the past 70 years and it certainly hasn’t settled down yet.” (Hacking, 2013)

Introduction
In 2023, 10 years after philosopher Ian Hacking’s pronouncement above, autism (or strictly speaking, our understanding of autistic people) is fast looking to become one of the significant cultural phenomena of this decade. I’ll say more below about what we might mean when we talk about “autism”, but for now let’s just say that some people, right through their lifetimes, experience and show important neurological differences in sensing, in processing information, and in processing social information.

The estimated prevalence of autism in children worldwide has been steadily growing, and at present varies between 1in 100 and 1 in 40. 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 (Autism Speaks, 2018; Zeidan et al, 2022).

This would imply that prevalence in the adult population should be little different from the figures above. Where then are all the unidentified autistic adults, and why are we just becoming aware of them now? The first thing to understand here is that autistic people come from autistic families. By this I don’t mean a family in which everyone would meet the formal criteria for autism spectrum disorder. I mean a family through which the genes for autism run, so that some may be autistic, and others may experience some of the relevant traits (the relevant genes are not found in all families, so the notion that “we are all a little bit on the spectrum” is not tenable). These days one of the common triggers for an adult to explore whether they might be autistic is discovering that one of their children is autistic, given our current awareness of the largely genetic basis of autism.

Secondly, it was long assumed 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).

Thirdly, many autistic adults received diagnoses that hid the fact they were autistic. Common examples of these misdiagnoses (and/or comorbid problems), as far as we can tell, have been 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 use what is often called “masking” to hide their differences from 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.

As our awareness grows beyond the notion that autism is something to be associated mostly with children and with the male gender, many adults (of all genders) are realising that they may be autistic. This realisation can then be used to make a lot of sense of their life experiences and struggles, but many may need informed professional help to do so. Autistic people (especially those growing up without knowledge of being autistic) are even more vulnerable than the general population to conditions such as social anxiety disorder, generalised anxiety disorder, depression and eating disorders, and the suicide rate among autistic people is much higher than in the general population (O’Loughlin, 2020).

When they seek therapy, allowance needs to be made for their autistic personality and perspective. In other words, therapy needs to be autism-informed, in the same way as there has been growing awareness of the extent that it needs to be trauma-informed and culturally-informed (Koenig & Levine, 2011).

Autism – Current thinking and terminology
An autism-informed therapist needs to be accurately informed about autism. At a minimum, they need to be up-to-date as to what is myth and what is current thinking, as well as showing sensitivity to a client's preferences with regard to language and terminology.

Established, official terminology in psychiatry and in clinical and educational psychology still clusters around such concepts as deficit, disorder and disability. Some use of the framework of disability is often acceptable to autistic people, with the proviso that improvements in societal acceptance and environmental accommodations would greatly lessen the experience of being disabled, a view that is known as the social model of disability (Woods, 2017).

The most widely held view among autistic people nowadays is 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.

This view connects with a broader shift in thinking in relation to psychological/neurological difference, i.e. the neurodiversity paradigm. This is a term 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.

Neurodiversity can be defined as:

“…an approach to learning and disability that argues diverse neurological conditions are a result of normal variations in the human genome… [which] “…should be recognized & respected…on a par with gender, ethnicity, sexual orientation, or disability status.”

(Disabled World, 2022).

As it has developed, the word neurodiversity can refer to a few different but connected ideas:

• an evolutionary fact (psychological/cognitive diversity is underpinned by neurological diversity, which is in turn underpinned by genetic diversity plus diversity of learning environments)
• a paradigm/framework/viewpoint (autism and ADHD, along with other “conditions” are seen primarily as atypical, “neurodivergent” examples of human neurodiversity)
• a minority rights movement/programme (part of the broader diversity movement, including gender/relationship/sexual diversity, cultural diversity, and racial/ethnic diversity.)

As well as neurodiversity, there are some other key terms that it is important for therapists to have an up-to-date awareness of. First of all, some terms that were/are well-established, but have become controversial:

• Asperger’s syndrome (AS) used to be a common diagnosis, and was seen as a particular subset of autism spectrum disorder (ASD). However, as time went by many professionals in the field could see less and less reason for a distinct separate category, and in the 5th edition of the American Psychiatric Association’s Diagnostic & Statistical Manual of Mental Disorders the category was dropped. This move was controversial for some, who feared that the loss of their AS diagnosis would deprive them of necessary supports, but in fact AS was redefined as ASD Level 1. Others were glad of the change, because they viewed AS as a kind of “elitist” version of autism. Of course, the term can still be used outside of formal psychiatric/psychological contexts, but in fact it’s decreased use has been hastened by the publication of documents suggesting that Hans Asperger had collaborated with the Nazi regime in relation to medical experiments (Czech, 2018).

• Person-first language
• In the world of disability in general, it has been the practice for a number of decades now to use and recommend the term “person with a disability” instead of “disabled person”. This usage has been transferred to the world of autism, and many professionals use and recommend the term “person with autism”. In fact, many autistic people (what proportion is unclear) prefer “autistic person”. Some of the stated reasons for this preference are, firstly, that an autistic person’s “autism” shouldn’t be talked of as if it was somehow separate from the autistic person (like saying “a woman with lesbianism” rather than “a lesbian woman”), and secondly that person-first language seems overly careful and delicate, whereas there shouldn’t be any need for caution unless unnecessary negative associations are seen to be attached to being autistic. It’s a good idea for therapists to be alert to possible client preferences in relation to this issue.
• High-functioning/low-functioning

Some important terms have only relatively recently (perhaps in the last decade or so) become widespread within the autistic community, so therapists might not be up to date on them even if they have studied the area of autism before:

Masking
The term “masking” 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, repressing, over-compensating, camouflaging, mimicking, impression management, double consciousness, false self, self-denying, self-forgetting, self-diminishing, and other coping strategies. Ongoing, severe masking often leads to low self-esteem, negative self-view, self-criticism, self-hatred and shame. The ongoing effort of masking takes enormous energy, which frequently leads in turn to:

Autistic Burnout
The burnout that autistic people experience 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).

Autistic Meltdown
Often, before full burnout (or without ever actually quite reaching burnout), many autistic people will experience one or more “meltdowns” under pressure (often sensory or social pressure). The term is somewhat self-explanatory, and includes a sense of mental and emotional overload, inability to cope with the current situation, a need to escape/collapse. In children (and sometimes in adults) it may be mistaken for a tantrum, but tantrums are strategic and can be snapped out of easily if their object is achieved.

Stimming (self-stimulatory behaviours)
Stimming can take many forms, for example nail biting, hair twirling, cracking of knuckles/joints, drumming fingers on a desk, jiggling foot, pencil tapping, playing a song on repeat, pacing, arm flapping, head banging, spinning, rocking, patterned noises/words, patterned thoughts/images/imagined sounds.

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.

Myths and Definitions
There are still many widespread myths and misunderstandings with regard to autistic people, so before we proceed to definitions and criteria, let’s just put paid to a few of them:

• One myth that we have already met is the notion that autistic girls and women are an incredibly rare phenomenon. This has clearly been discovered to be false and we need to catch up on this fact as quickly as possible.
• Another common set of myths (sometimes still perpetuated by the media) is that autistic people are unemotional, unsociable, and unempathic. Again, these “facts” 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).
• Another myth that doesn’t seem to have quite gone away yet is the idea that the goal of therapy is to heal/reduce the client’s autism. Within most of the adult autism community this idea is treated with the same contempt that any right-minded person has for gay conversion “therapy”.

First, let’s look at a very summarised version of a criteria set that is definitely disorder-focused, the DSM 5 (American Psychiatric Association, 2013) Criteria for autism spectrum disorder:

• Persistent deficits in social communication and social interaction, i.e. in: Social-emotional reciprocity; nonverbal behaviours used for social interaction; developing, maintaining, and understanding relationships.
• Restricted, repetitive patterns of behaviour, interests, or activities, i.e. Stereotyped or repetitive motor movements; insistence on sameness; highly restricted, fixated interests; hyper/hyporeactivity to sensory input.

As mentioned above, the DSM further divides the diagnostic possibilities into three levels:

Level 1: Requiring support (equivalent to Asperger’s syndrome)

Level 2: Requiring substantial support

Level 3: Requiring very substantial support

From the neurodiversity viewpoint, the areas focused on in the DSM criteria list are not under major question with regard to accuracy, but the language used is very controversial, at least outside of the psychiatric profession.

Differences/difficulties in social communication and social interaction generally 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 definitely give rise to a sense in autistic people that “everyone else got a copy of the instruction manual except me”. But, within the neurodiversity paradigm, these would all be seen as differences, not “deficits”. Similarly, intense interests, sensory sensitivity, preference for a strong element of routine and planning, and of course a possible need to stim, are again an accurate take on some of the less socially-focused aspects of being autistic, but language such as “highly restricted”, “insistence”, and “stereotyped” are felt by many autistic people to be nothing short of insulting.

Next, here is another (again highly summarised) list, this time with a deliberate positive emphasis, for balance:

A. Advantage in social interaction manifested by:
1. relationships characterised by absolute loyalty

2. free of sexist/ageist/culturalist biases

3. speaking one’s mind irrespective of social context

B. Language characterized by:
1. a determination to seek the truth

2. conversation free of hidden meaning or agenda

C. Cognitive skills characterized by:

1. strong preference for detail over gestalt

2. original perspective in problem solving

D. Additional possible features:
1. acute sensitivity to specific sensory experiences.

(Attwood & Gray, 2013/2021)

Of course, in practice not everyone welcomes “a determination to seek the truth” or “speaking one’s mind irrespective of social context” (some of the reactions that Greta Thunberg has experienced come to mind), but at least officially they are virtues! It’s interesting also to note that sensory sensitivity is included on a “positive” list. Many people only associate negatives with this aspect of being autistic (e.g. difficulty with bright lights, noise, clothing labels), but sensory sensitivity can be a valuable asset to an artist or a chef, or can simply enhance our experience of beauty in nature and elsewhere.

And lastly here’s my own current draft (attempting to be relatively neutral), covering differences in sensing, differences in processing information, differences in processing social information:

• Intensity of experience, often characterised by extremes of sensory sensitivity.
• Possible use of stimming behaviours for self-regulation, self-expression, emotional processing and communication.
• Heightened awareness of aspects of the environment (especially non-social aspects), and intense interest in exploring and discussing some of these aspects.
• Independent learning, with detailed memory for areas of interest, and strong systemising and pattern-seeking abilities.
• Preference for communication as accurate transfer of useful information (e.g. less interested in small talk).
• Higher value placed on truth, consistency, fairness and rules that make sense, than on social conformity for its own sake.
• Preference for authenticity and quality in friendships, rather than quantity.

Autism-Informed Therapy
Autism-informed therapy (AIT) is simply therapy that takes autistic neurodivergence into account, and adapts to the particular ways autistic people process the world. It is part of the larger context of neurodivergence-informed/affirming therapy, but my main focus in this article is on the autistic type of neurodivergence.

AIT also takes into account the reality, for many adult autistic clients, of some kind of autistic over-adaptation (discussed above as “masking”), in the sense that they have had to learn to adjust, often in unhealthy ways, to a largely unaccepting world. Some autistic people have developed “internalised ableism”, a kind of internalised “autistophobia" analogous to the internalised homophobia experienced by some gay/lesbian people, because of the stigmatisation and oppression they have experienced. Helping the client to “unmask” is therefore usually one important focus of therapy, along with whatever other presenting issues they bring.

Autistic clients of course need to be met and appreciated as the individual they are, with their unique goals, strengths, and history. Therefore, as with any client, AIT needs at least to be:

• Person-Centred in order to convey proper appreciation of the client's individual perspective.
• Motivation-Focused in order to ensure that therapy tracks the personal values and life goals of the client, which often diverge from those considered “typical”.
• Strengths-Focused to counteract the invalidation and disempowerment experienced by many autistic people.
• Trauma-Informed given that many adult autistic clients have had multiple traumatic experiences as they tried to survive in a largely unaccepting world.

There is no reason, so far at any rate, to see any one therapeutic approach as more suitable than others for autistic clients. However, in my own clinical work I have found that elements of approaches such as cognitive behavioural therapy, dialectical behaviour therapy, acceptance and commitment therapy, or solution-focused therapy can often be useful and welcome, as these approaches tend to be:

• issue-focused, skill-focused, and outcome-focused
• structured, educational, and experimental
• explicit in their rationale for any therapeutic work that is suggested.

All of the above points assume that both client and therapist know that the client is autistic (either through their own discovery process or via formal assessment). What if autism has never been mentioned, but the therapist begins to wonder, as they get to know the client, whether it might possibly be relevant? Should the therapist raise the possibility at some point? This is of course a matter for each therapist to decide, based on their theoretical orientation, therapeutic style and working context.

If it is something a therapist might be open to taking the lead on (and many clients have benefited greatly from this happening, from my own experience, and from what I have been told), then I offer the following tentative suggestions:

• Wait until therapy is reasonably advanced before considering such an intervention (both to establish a strong therapy relationship, and to ensure that your knowledge of the client is fairly extensive).
• Gather your “evidence” for your hypothesis and discuss this with your supervisor.
• Discuss also your fears/hopes for what might happen if you raise the possibility with your client.
• If you then decide it is worth proceeding, wait until you and your client are discussing a relevant issue/problem/mystery, for example, why they struggle with relationships or small talk, or why they have always felt so different from other people.
• Use this as a “hook” to mention how much more common it nowadays for people to talk about the idea of “neurodiversity”, and to wonder about possibilities such as ADHD and autism when trying to understand themselves.
• After that, it depends on their reaction. They may not pick up the suggestion at all, or they may be curious as to your thoughts on it. Or (surprisingly often in my experience) they may say “actually, I’ve often wondered about that”, or “friends often tell me I’m a bit autistic”, or “I have a brother/nephew who is autistic, but I always thought I was too different from him”.
• If the client then wants to explore it further, it is of course not our job to formally assess in any way, but we can suggest reading/videos/inventories, provide a list of psychological services that provide assessments if wanted, and explore the client’s childhood, extended family and relationships, with this new idea in mind. Many clients just want to engage in their own discovery process, with a bit of support and assistance, and have no desire/need to get a formal assessment. There are a number of reputable inventories/questionnaires available for further exploration (e.g. Embrace Autism, 2018-2022).

A useful and practical way to draw an overview like this to a close is to take a look at some possible implications for the therapy setting. Given that therapy is a social/interpersonal setting, particular attention should be paid to non-typical ways in which an autistic client may process and interact with the social world. Clients may have a greater than average need to clarify the context, boundaries, “rules” of the therapeutic social/interpersonal setting. Different therapeutic approaches have their own assumptions and norms (both explicit and implicit) about interpersonal interaction, which might not be helpful to autistic clients.

Therapists may also need to make allowances, up to a point, for different preferences with regard to practical communications outside of sessions e.g. setting up or cancelling appointments. Sensory aspects of the therapy setting should also be given consideration and discussed, as sensory sensitivity is an issue for many autistic people.

And finally, some further points that may be useful:

• Clients may be unusual in their use of verbal language and/or body language – need for stimming, less need for eye contact, atypical facial expression or need to “infodump”.
• Clients may make less use of communication to manage relationship (e.g. “small talk”)
• Clients may initiate discussion less than is usual.
• Concrete language is often welcome, though metaphors can be used (despite the myths to the contrary).
• Therapists may need to do some “cross-cultural translation”, psychoeducation about “neurotypical” ways of thinking, feeling, behaving.

Conclusion
So, in conclusion, this is a growing area of need for clients and of opportunity for therapists (and therefore for supervisors). A lot more training is needed over the next number of years, both at CPD level and at earlier stages of counselling/psychotherapy training. There are potentially exciting times ahead, but as with any area of therapeutic need there will be ignorance and misunderstanding, minimisation of the problems, battles over insufficient funding, and other all-too-common obstacles to greater awareness and appropriate support for a growing marginalised population.

Eoin Stephens

BA Psychology, Dip Counselling, MA Cognitive-Behavioural Counselling, MIACP, MACI. Eoin is a Counsellor/Psychotherapist and Trainer who has worked in the areas of Disability, Addiction Treatment, Education and 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 nearly 10 years ago.
Eoin’s website is: www.autisminformedtherapy.com

References

American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders( 5th ed.)

Attwood, T. & Gray, C. (2013/2021). https://tonyattwood.com.au/the-discovery-of-autism-by-attwood-gray-jan-2013/

Autism Speaks (2018). https://www.autismspeaks.org/autism-statistics-asd

Czech, H. (2018). Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna. Molecular Autism, 9, 29.

Disabled World (2022). https://www.disabled-world.com/disability/awareness/neurodiversity/

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?

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.

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.

Hacking, I. (2013). https://www.bshs.org.uk/podcast-professor-ian-hacking-making-up-autism

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

O’Loughlin, C. (2020). https://extra.ie/2020/04/27/news/as-i-am-national-strategy-suicide-rate-autistic-people

Rose, K (2018). https://theautisticadvocate.com/2018/05/an-autistic-burnout/

Silberman, S. (2015). NeuroTribes: The Legacy of Autism and How to Think Smarter About People Who Think Differently. Avery.

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:

• American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). APA.
• Beardon, L. (2017) Autism & Asperger Syndrome in Adults. Sheldon Press.
• Chaplin, E. et. al. (Eds) (2019) A Clinician’s Guide to Mental Health Conditions in Adults with Autism Spectrum Disorders: Assessment and Interventions. JKP.
• Cunningham Abbott, A. (2020) Counselling Adults with Autism: A Comprehensive Toolkit. Routledge.
• Fletcher-Watson, S. & Happe, F. (2019) Autism: A New Introduction to Psychological Theory and Current Debate. Routledge.
• Paxton, K. , Esta, I.A. (2007) Counselling People on the Autism Spectrum: A Practical Manual. JKP.
• Singer, J. (2017) NeuroDiversity: The Birth of an Idea - revised ed. Singer.

IAHIP 2023 - INSIDE OUT 99 - Spring 2023