As an autistic counsellor, I am often asked what a therapist should do if they suspect their client might be autistic. The advice is often to say nothing to the client and refer them to a GP, on the basis that a GP is better able to recognise whether or not a person is autistic. People also draw attention to other conditions that could be mistaken for autism, or at least muddy the waters. They also warn of the dangers of offering a diagnosis to a person who might be disinclined to question the word of a professional.
I often find that the people who give such advice describe autism in outdated and stereotypical terms. They also fail to take into account recent advances – frequently autistic-led – in the understanding of autism, its differing presentations and experiences, as well as the influence of the environment and co-occurring conditions.
In the time since autism has been recognised as a distinct syndrome,1 its definition has undergone a radical shift and expansion. For example, in 1985 Simon Baron-Cohen wrote: ‘Childhood autism is a severe developmental disorder. It is a rare condition, affecting about 4 in every 10,000 children... the majority of autistic children are mentally retarded.’2
We would now say that autism is a not-very-rare developmental disorder or difference. It is much more common than Baron-Cohen thought; the latest estimate is about two in 100 of the general population. We also know that the majority of autistic people do not have an intellectual disability.
There are two, very distinct ways of looking at autism, a split that roughly equates to the two different ways of looking at disability: the medical model and the social model.3 In the case of autism, the split also roughly equates to the deficiency model versus the difference model, the latter more generally known as the neurodiversity model.4
The medical deficiency model might be expressed thus: ‘Autism spectrum disorder (ASD) is an early onset neurodevelopmental condition that is associated with diverse social, occupational and educational challenges. ASD is characterised by impairment in qualitative social communication and interaction, alongside rigid, repetitive, routine, ritualistic behaviours and adverse sensory responses to certain stimuli.’5 The other model is quite different – and comes from the experience of autistic people.
No one can understand autism in the same way as an autistic person. We should also recognise the many autistic researchers and educators who have contributed to the proper understanding of autism in recent years. To name just a few: Damian Milton, Dinah and Fergus Murray and Sarah and Jess Hendrickx.
And then there are the ordinary autists, like me. I have lived experience of autism, as no non-autistic person has, whether or not they have lived with, worked with or even parented an autistic person.
Suppose I, a Scot, were married to a Swede, had a half-Swedish child and knew quite a lot about Swedish culture. I still wouldn’t have personal experience of being Swedish, of growing up Swedish. But nobody would know that, just by looking at me. And when I revealed my Scottish identity, in passable Swedish, they would not say: ‘But you don’t look Scottish.’ They would take my word for it and maybe make some allowances. Speak a bit more slowly? Not offer me surströmming (strong-smelling, fermented herring)?
Autism is a way of being, a way of experiencing the world. It is not, in itself, a disorder, simply a difference. Luke Beardon of Sheffield Hallam University states: ‘Autism is categorically not a disorder or condition, in my view.’7
Many autistic people, myself included, think of it more like a culture. We have trouble understanding the non-autistic world because it is not our culture – just as I, a Scot, might have trouble understanding the culture of Sweden. And non-autistic people have equal trouble understanding our culture, as Crompton et al8
have demonstrated. The idea is also at the heart of Damian Milton’s ‘double empathy’ theory9 and underpins Luke Beardon’s use of ‘predominant neurotype’ (PNT) to describe non-autistic people.10,11 The autistic neurotype is not inferior; it is simply not predominant.
In an inclusive world, autistic and non-autistic people would be seen as people with two different operating systems. Some prefer Apple and others prefer Microsoft. Undoubtedly, each operating system has its advantages and disadvantages, but both are used and accepted. If you gave me a laptop and asked me whether it was a Mac or a Windows PC, I would know immediately. I am trained on both and could use either equally well. I have a preference for Mac because I’m more accustomed to it. But I can do almost everything on a PC that I can do on a Mac – just slightly differently.
Autism is not a collection of impairments, challenges, adverse reactions, ‘bizarre behaviours’;5 it is a combination of experiences, a way of experiencing and processing the world. It’s striking that when autistic people talk about autism, we focus on the experience; non-autistic people focus on the behaviours and the impairments.
However, if a therapist is following the diversity model, they are more likely to be thinking that the client might have a cognitive and sensory processing style that is not the predominant one. They might also think that it would be useful for the client to know this, so they can live their best life and play to their strengths. In that case, a clinical diagnosis will take second place to self-knowledge and self-understanding. Clearly, if one wants or needs a clinical diagnosis, one has to go through a diagnostic process, and that will often start in the GP’s surgery. But while a diagnosis can be valuable, it is not within our remit as counsellors. But self-knowledge, self-understanding and discovering our new identity as autistic are at least as valuable – and are most certainly within the remit of the counsellor. And that process begins in the counselling room, and begins long before the word ‘autism’ even appears.
So, when you are talking with a client and you wonder whether they are autistic, don’t primarily observe behaviours or mentally tick off impairments. Ask about experiences. If you really know about autism from the inside – either through your own, lived experience or through listening to autistic people – you will have progressed beyond stereotypes and know the right questions to ask.
Autistic people vary as much as non-autistic people. I belong to an international group of autistic therapists; our backgrounds, current environments, special interests and approaches to clients could not be more different. There are psychologists, art therapists, music therapists, therapists from modalities as different as cognitive behavioural therapy (CBT), person-centred therapy, Gestalt, human givens, transactional analysis and psychoanalysis. One of us calls her practice ‘Curiosity Spot’, because you never know what you’ll find.
You cannot identify an autistic person by the type of childhood they have had, the type of relationship they are in, the type of work they do, the things they are interested in, whether or not they have friends, whether or not they are creative, whether or not they ‘look’ autistic. You can only identify an autistic person by their experience of the world. Ultimately, it is not for you to say that a person is autistic. It’s not for the GP, either – nor the psychologists or speech and language therapists. It can only be a joint venture, and centred always on the experience of the person. But maybe it is your role to start the conversation.
Next in this issue
So, what are the clues that could alert you to the possibility that a client might be autistic? Don’t ask whether they are fascinated by dates or whether they would rather go to a library than a party. Don’t ask whether they are more attached to things than people. In other words, don’t start with the Autism Spectrum Quotient (AQ) test.13 Many of the questions are based on stereotypes.
Some of them are opaque to an autistic mind, and some are so ambiguous as to be hardly worth asking. It’s not a bad tool to give an indication of whether it is worth referring for diagnosis. The GP will also probably use the AQ test, or its shorter cousin, the Short Autism Spectrum Quotient. But you, as an attentive counsellor, have already bypassed the ‘symptoms’ and are getting a feel for the person and their experience of the world.
You will perhaps have spotted that, although your client is, for example, presenting with depression, anxiety or trauma, there is something else. A difference. Don’t make an effort to identify it. In focusing therapy, we sometimes acknowledge there is ‘a something’ and allow it to become clear in its own time.
You might hear the client talk about sensory sensitivity: sounds, smells, scratchy clothes, bright lights. Or they might be sensory seeking: soft fabrics, weighted blankets, cold water. They might have a consistent feeling of difference, which can be traced back to childhood. They might comment on their slow processing speed, despite the fact that they have average or high intelligence, or refer to perceiving the world as bewildering, or to consistent misunderstandings (one autobiography is entitled, But You Said...?!).14
They might well be aware that ‘being themselves’ is often disastrous, so they feel they are constantly masking, camouflaging, imitating others in order to look or behave ‘right’. They might note a tendency to see details rather than the whole. They will almost certainly have an intense focus on special interests, which can be anything from the stereotypical computer programming or train timetables to language, traditional music or circus skills. Many autistic people get into trouble at school or at work due to what is known as the autistic spiky profile, when skills levels vary dramatically from one area to another: the rare ‘savant’ is an extreme version of a spiky profile. Samantha Craft has put together a very good ‘unofficial’ list of autistic traits.15
Just to be clear, I am not advocating that you say to your client: ‘I think you are autistic.’ Similarly, I wouldn’t ask: ‘Has it occurred to you that you might be autistic?’ As a person-centred therapist, I would almost never derail a client in such a way. There are, of course, times when you realise they have said everything except the word, and they are wordlessly begging you to say it. Then... cautiously, tentatively, maybe.
I am in an unusual and privileged situation as one of the few, fully ‘out’ autistic therapists in the UK, and a client who chooses to come to my practice generally knows that. My client base at the moment is about 80% autistic. So, if I were to encounter a client describing their experiences in ways that corresponded with the autistic experience, it would not be unreasonable for me to ask them whether that was why they had chosen me as their counsellor.
A non-autistic counsellor might say: ‘There’s something else, isn’t there? Something that goes back beyond the depression, the anxiety, the trauma?’ Or you might pick up on the client’s language of difference. ‘It’s not easy feeling different, is it?’ Or, to a client who’s said they feel alien: ‘Tell me what your planet looks like.’ It all depends on what feels right for that client at that time. There can be no hard and fast rules, beyond the core conditions of empathy, congruence and unconditional positive regard. Except, of course: ‘First, do no harm.’
And if you are working with an autistic client, diagnosed, self-diagnosed or questioning, and you see autism according to the medical ‘deficiency’ model, you risk doing quite a lot of harm.
Autism is not a deficiency, far less a tragedy. For most of us, the knowledge that we are autistic came as a huge relief. I have quoted many times my own exclamation: ‘So, I’m not mad, bad and dangerous to know. Just wired differently.’ A straw poll among my peer group of autistic therapists revealed that 44 of 50 respondents experienced their diagnosis or identification with joy or relief; only one felt the diagnosis meant they would not be able to achieve what they wanted in life. Anecdotally, this pattern seems to be replicated in most groups of late-diagnosed autists. And yet the tragedy narrative persists.
Presenting autism as a disorder, a disease almost, has a devastating effect on autistic people. Monique Botha16 speaks in detail of the dehumanisation of autistic people in research, starting with her own experience during her undergraduate degree. Her identity was relegated to ‘abnormal psychology’ and described in stereotypical and inaccurate terms. She comments: ‘I became not just a triad of impairments, or someone who lacked the ability to infer the minds of others, or empathise, but something that was described in terms of categorical sub-humanness – incapable of culture, friendship, community, and reciprocity; someone who is less domesticated, more aggressive, an economic burden, with integrity equivalent to non-human animals alone.’
Some of the quotations that Botha gives in her article should come with a trigger warning. Sadly, this is still a familiar experience for autistic people who attempt to counter the stereotypes, both in research and in the wider community. It should not be the experience anyone has in the counselling room, which should be the ideal place for a client to start on the journey to recognising their own possible neurodivergence.
It can be problematic to refer a client directly to a GP, without first giving them the tools to describe their experiences and feel well grounded in their own self-understanding. Elaine Nicholson rightly states that ‘...over half of adults who suspect ASD initially visit their GP, yet ASD is frequently overlooked or misdiagnosed in adult patients by primary care physicians, due to lack of experience in detecting autism traits. In addition, adults with ASD are at high risk of co-occurring mental health conditions, non-suicidal self-injury and suicidality.’5 This is absolutely true.
GPs often don’t have enough experience of – or training in – how autism presents in adults, especially women. These adult patients have, by definition, not presented in a typical way in earlier life, or they would already have been identified. They are therefore likely to be missed by an inexperienced and busy GP, especially if there are apparently more pressing, presenting issues.
In a blog post, Autistic Science Person17 describes the long list of common misdiagnoses that autistic people regularly receive, before the correct diagnosis of autism is finally made. No stigma should accompany a diagnosis of schizophrenia, bipolar disorder, depression, borderline personality disorder or any other condition. The point is simply that a misdiagnosis can lead to inappropriate treatment and sometimes actual medical harm.
Suppose the GP did have sufficient knowledge to identify that my client might be autistic. Would they do the AQ test, talk about disorder and deficiency and refer without discussion, which could be devastating had the client not already explored autism as a simple difference in experiencing and processing style? Or would they avoid the question and simply ‘reassure’ the client that it’s probably depression or anxiety? It is surprisingly difficult to persuade a GP to refer an adult without major co-occurring conditions for an autism assessment.
Again, that is understandable if one regards autism as something bad, a disastrous diagnosis, on a par with an incurable disease. It is, of course, ‘incurable’, but that’s because it’s not a disease but a minority sensory and cognitive processing system. I can’t ‘cure’ my blue eyes. I can mask them by wearing tinted contact lenses, but I can’t change their actual colour. Why would I want to? And neither would I want to ‘cure’ my autism, which is an essential part of who I am. It is my operating system, as MacOS is the operating system of my laptop. Without it, I would not be myself.
It would seem strange to me to refer a possibly-autistic client to the GP, without exploring it with them first. We are not diagnosing; we are listening and discussing. There is no danger that our client might be cowed by the opinion of an ‘expert’: in the counselling room, the client is the expert. We are not imposing our opinion; we are asking them what they make of their experiences.
In addition, many autistic people, because we do not share the views and values of neurotypical society (often enough, we are not even aware of them), might actually be less likely to accept an opinion, simply because it comes from someone who has a higher status in neurotypical society. We might be more likely to go away and do the research for ourselves.
It’s true that some other conditions might muddy the waters when we are trying to identify whether a person is autistic. Anxiety and depression are common, co-occurring conditions; suicidality, self-harm and eating disorders are also more common in autistic people than in the general population.
But it’s worth noting that autistic people are not necessarily, as such, more prone to these conditions.18 Consider how you might feel if you were living in a society that was not only incomprehensible and unpredictable, but actually designed to discriminate against you; a society that misunderstands you and tells you that you are at fault, that your very being is deficient and disordered, that you are doomed to a life of failure. Bullied, gaslighted, confused, in constant pain from sensory sensitivities – it is a wonder that any of us emerge unscathed.
The concept of ‘minority stress’, which has been used predominantly to explain the health disparities within the LGBTQIA+ community, also applies to autistic people. Monique Botha explains that it ‘...posits that social disadvantage and marginalisation results in an increased burden, which in turn can result in mental and physical health disparities’.19 The counsellor who has sat with a client and listened week in, week out is far better placed to disentangle the autism from the rest, than a GP who hears the whole story in 10 minutes.
So, when you begin to suspect that your client is autistic, don’t think: ‘Oh no. Should I break the bad news to them and, if so, how?’ Think: ‘Here is a chance for this person to discover something really essential about the self they truly are, to stop trying to be what they are not and at last to play to their strengths.’
As Nick Walker says: ‘Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.’20 And, to quote one of my own autistic clients (with permission): ‘Harmony singing is a perfect analogy for the way we should view difference. We are not singing the same thing (sometimes the parts are very different indeed!) but all those different things make up something beautiful.’
1 Kanner L. Autistic disturbances of affective contact. The Nervous Child 2 1943; 217–50.
2 Baron-Cohen S, Leslie AM, Frith U. Does the autistic child have a ‘theory of mind’? Cognition 1985; 21(1): 37–46.
3 Milton D. Difference versus disability: implications of characterisation of autism for education and support. In: Jordan R et al (eds). The Sage handbook of autism and education. London: Sage; 2019 (pp3–11).
4 Singer J. Why can’t you be normal for once in your life? From a ‘problem with no name’ to the emergence of a new category of difference. In: Corker M, French S (eds). Disability discourse. Buckinghamshire: Open University Press; 1999 (pp59–67).
5 Nicholson E. How do you know if your client has autism? Healthcare Counselling and Psychotherapy Journal 2020; 20 (2): 14–16.
7 Beardon L. Autism and Asperger syndrome in adults. London: John Murray Press; 2018.
8 Crompton CJ et al. Autistic peer-to-peer information transfer is highly effective. Autism 2020; 24(7): 1704–1712.
9 Milton D. On the ontological status of autism: the ‘double empathy problem’. Disability & Society 2012; 27(6): 883–887.
10 Beardon L. Asperger syndrome and perceived offending conduct: a qualitative study. [Online.] http://shura.shu.ac.uk/7155/1/Beardon_aspergers_-_full.pdf (accessed September 2021).
11 Beardon L. Identification of adults on the autism spectrum: a suggested pathway and good practice principles. [Online.] www.researchgate.net/publication/262606996_Identification_of_adults_on_the_autism_spectrum_a_suggested_pathway_and_good_practice_principles (accessed September 2021).
12 Rogers CR. On becoming a person. Boston: Houghton Mifflin; 1961.
13 Psychology Tools. [Online.] psychology-tools.com/test/autism-spectrum-quotient (accessed September 2021).
14 Wishart E. But you said...?!: a story of confusion caused by growing up as an undiagnosed autistic person. Kindle Direct Publishing; 2020.
15 Craft S. Everyday Asperger’s. [Blog.] Day 62: females with Asperger’s syndrome (non-official) checklist 2012; 31 March. everydayaspergers.com/2012/03/31/day-62-females-with-aspergers-syndrome-nonofficial-checklist/(accessed September 2021).
16 Botha M. Academic, activist, or advocate? Angry, entangled, and emerging: a critical reflection on autism knowledge production. [Online.] doi:10.3389/fpsyg.2021.727542 (accessed September 2021).
17 Autistic Science Person. [Blog.] Adult misdiagnosis – the default path to an autistic identity 2019; 15 June. autisticscienceperson.com/2019/06/15/adult-misdiagnosis-the-default-path-to-an-autistic-identity/ (accessed September 2021).
18 Cage E, Di Monaco J, Newell V. Experiences of autism acceptance and mental health in autistic adults. Journal of Autism and Developmental Disorders 2018; 48(2): 473–484.
19 Botha M, Frost DM. Extending the minority stress model to understand mental health problems experienced by the autistic population. Society and Mental Health 2018; 10(1): 20–34.
20 Neuroqueer. What is autism? [Online.] neuroqueer.com/what-is-autism/ (accessed September 2021).