Recently I was approached by two autistic people who wished to try to educate counsellors about autism, after seeing my letter to the BACP on trans conversion therapy. I would like to thank them for working with me on this piece, and, as always, thank my clients, who whilst unnamed are my greatest educators.
If I use the word autism what associations does it conjure in your mind? For a certain generation it is probably Dustin Hoffman in Rainman. For others it may be the controversy, now happily laid to rest, over the MMR vaccine. For almost a century now it has been used to cover a variety of behaviours, often first appearing in childhood.
The word itself was first used by Paul Eugen Bleuler, to describe a feature of schizophrenia. For him autism described a loss of contact with the outside world. Whilst his attitudes (he was a eugenicist) and conclusions may seem upsetting, or unacceptable today his importance cannot be underestimated. Firstly he believed in diagnosis based on observation and interaction with patients, secondly he believed that there was a biological, rather than psychological basis for some conditions.
Unfortunately in the history of autism, or rather those who studied and attempted to treat it, this idea it was a condition with a biological basis was largely ignored in favour of a blame the parents model. Leo Kanner can be credited with making the term autism popular, but also with the term “refrigerator mothers”. His influence led many to see autism as a response to a failure to bond, an extreme form of the Kleinian split, which could be treated by methods such as enforced contact between parents and child.
Hans Asperger’s, after whom Asperger’s syndrome was named, took a very different view, describing his “little professors” he too took a biological basis, and something closer to the social model of disability (although of course without such a concept existing at the time). Whilst his work was little known in the UK until 1981 his belief that those with Asperger’s could function in society, and do so because of their difference, not in spite of it, was revolutionary.
Now autism is described as a spectrum, with some common characteristics, but a variety of ways in which they are expressed. In preparing this article I spoke to a variety of people about being autistic, as well as TS and K, who originally approached me, are both autistic and have experience of being in counselling. They have requested to remain anonymous. One of the first things they wanted to challenge was the term “high functioning” in relation to the autistic spectrum.
Me: Along with the idea of autism as a spectrum has come the phrase “high functioning” could you explain why you dislike this phrase?
TS: For me, high functioning ignores what is actually going on, it says, that the huge amounts of anxiety, stress, and panic you may be having do not matter so long as you “look normal”, do not stim, don’t do anything that marks you as autistic
K: Yes, I agree with T, and there is another aspect, high functioning judges autistic people according to how well they verbally communicate, when it is a condition which affects the ability to communicate. Non verbal autistic people are seen as lesser, despite their being a variety of technical aids which can be used, these somehow don’t count though, it has to be the spoken word.
TS: That’s such a big part of the problem, high functioning simply means not acting autistic in any visible way, and not needing any aids, but you might need aids, you might be only just coping, it ignores our actual experiences.
Me: You both kindly agreed to talk to me about your experiences of counselling, could you just outline why you wanted to?
TS: I accessed my student health service, when I was doing my Masters, but it did not go well. Despite the fact I was autistic being in my notes, the counsellor seemed to think if I just thought more positively I could get over my social anxiety. Groups, large crowds, social interaction, are all very tiring for me, but she kept challenging me to go into social situations, as if it would “cure” my autism. In the end I stopped going to counselling, and got support from friends around pacing, leaving events, scheduling down time. I suppose that’s why I initially contacted you, because I saw huge parallels between conversion therapy and how I was being treated.
K: I have had two different periods of counselling, one successful, one, not so. The first was very like T’s. I was meant to not get tired, or anxious, until just now, reading T’s email I would never have put it like that, but yes, it was as if I was not meant to be autistic. The second time I went to counselling was very different. They accepted me, and oddly, even though we did not work directly on my OCD it got much better as the sessions progressed.
Me: It’s wonderful K to hear that, it sounds like the creation of a space where you were heard worked in the way counselling should, and it’s very brave to give it a second chance after a negative first experience.
Me: In working with autistic clients, this being heard, accepted, seems to come up a lot, and one thing I have noticed is it seems validating to hear “that’s not uncommon for autistic people” around issues like change, anxiety, and so forth. Does this sound familiar to you?
TS: Yes, its one of the reasons why online support, forums, blogs, can be really helpful. When you are autistic you spend so much of your time trying to fit in, trying to be like everyone else, it can be so liberating to know that a response isn’t a failure, but simply an aspect of being autistic. I think it would have really helped me in counselling if my counsellor had said, “OK, this is how social situations make you feel, that’s pretty standard for someone who is autistic, what strategies can we devise to help you?”.
K: But I would not want a counsellor to assume that the only problems I have are around being autistic, I accessed counselling because of a bereavement initially, I am not ‘just’ autistic.
TS: I agree, but, I do not want it to be ignored either.
Me: I think that is where there can be a huge parallel drawn with working with LGBTQ+ people, for any counsellors reading this, it’s very common for LGBTQ+ people to say exactly the same thing, that their gender and or sexuality, is as relevant as they, not the therapist want to make it.
Me: One of the common preconceptions about autism is that autistic people are without empathy, and do not want to socially interact with others. Could you both say a little about this?
K: It is such a huge misconception, that I cannot even get my head around it at times. I remember the first time I went to the zoo, getting into trouble because I burst into tears, but I could not help it, all those animals locked in little prisons, it upset me so much. Neurotypicals* seem to only be able to have certain forms of empathy, for those close to them for example, which to me is equally odd. Just because I do not instantly respond the way someone neurotypical does, does not mean I do not feel things just as strongly.
*neurotypical, abbreviated sometimes to NT is a word which means non autistic coined by the autistic community.
TS: I think the whole theory of mind thing is very outdated, and needs to go! You asked us to keep our answers non academic, and I can appreciate that, but I cannot help thinking of Wittgenstein, and private languages. How do we ever know we are communicating fully with another person? NTs more easily work out the rules of social interactions, and operate according to those rules. They therefore appear more empathetic because they know the right thing to say at the right times, it does not mean they are actually experiencing empathy more. Its far more about fitting in, and knowing how to behave. As for not wanting to interact, it is hard to explain how tiring social interaction is when you are autistic, it’s not that I am being antisocial, but something like a pub, it is next to impossible for me, for many reasons.
Me: To sum up, what would you like counsellors working with autistic people to take away from this interview?
TS: Firstly that what they may see as symptoms to be treated, are actually part of who we are, yes, discussion of coping strategies might help, but you cannot cure us of being autistic so stop trying. Then I would like it if counsellors, and others, took time to educate themselves, so I did not have to. Part of that education should include understanding the communication issues which may exist, around facial expressions for example, and considering how this might affect their work with autistic people.
K: I agree, see autism as part of me, not something you will cure, and then, see me as a whole person, take a holistic approach to who I am, and what my needs might be. I would also like counsellors to consider if other formats, such as instant messaging or email counselling might be the better option for many, including autistic people.
I would like to thank TS and K, for reaching out to me, for agreeing to be interviewed and for being so honest and thoughtful in their answers. In my own client work with autistic people I have been struck by how many prejudices, preconceptions and stereotypes they have to struggle against, and I hope this interview goes some way to tackling this.
A note on language, both K and TS prefer to use autistic person, rather than person with autism so this is the construction I have used here.
The image here is the autism infinity symbol designed to highlight that it is not a spectrum with “ends”