I thought the recent documentary on Channel 4 "Am I Autistic" was much better in terms of its attitude to autism  than previous generalist programmes on the subject. The main presenters where “out” autistic women (I think many people working in the autism field are unaware or closeted autistics) and the general attitude to autism although still regarding it as a somewhat unusual and exotic condition acknowledged the positives as well as the challenges. However, my default tends to be to notice flaws, so I'll focus on some of the interesting contradictions that surfaced for me when watching it.

The programme showcased Jo and JP, who had been aware that they were different all their lives (a sure pointer towards autism in my book) and who were wondering if they were autistic.  There were two autistic women presenters, Georgia and Sam, and a non-autistic narrator, Anna.

I found it paradoxical that Anna, who explained her interest in autism as due to  having an autistic nephew, could say categorically after hearing about Jo's difficulty with small talk "I have trouble with small talk and I'm not autistic" while at the same time claiming that for Jo, the only way to know for sure if she was autistic was to get a diagnosis.

Surely, if the only person who can tell if you are autistic is a clinician, it would also require  a clinician to tell if you're not autistic. If self-identification as autistic is not regarded as definitive until confirmed by a clinician, then the same should apply to being non-autistic (especially perhaps if you have autistic family members since we know that autism runs in families).

We also know all autistic traits are human traits and there is no currently measurable biological marker for autism so essentially a diagnosis is the opinion of  a clinician based on behaviour, self-reporting and family reporting. This makes it very susceptible to bias.

This programme, while supporting the diagnosis by Simon Baron Cohen (the originator of the discredited male brain theory of autism) as the arbiter of whether Jo and JP were autistic, also argued that more males were diagnosed because "females camouflage" their autism.  Thus, whilst they acknowledged that autistic females are under-diagnosed, this was attributed not to the lack of expertise of diagnosticians, but rather blamed on autistic women, because we don’t present like autistic men.

For people who have always felt different in some way, identifying as autistic can be the gateway to self-understanding and finding the courage to be authentic rather than constantly trying to fit a mould of “normality”.   Failing to get a diagnosis because you have managed to hide your differences or because you are female, can be a devastating blow*.  

My concern is that people who "fail" the diagnostic test feel that they are “frauds” living in a no-man’s land; unable to function typically, but denied the possibility to claim and explore a condition which explains their difficulties.

Autism awareness is not evenly distributed throughout society and therefore many autistic people are without access to information that could transform their lives. In this situation formal diagnosis can be helpful - the artist Sonia Boue told me that her autism diagnosis was a positive turning point because it helped her leverage her strengths and recognise some of her challenges were due to her brain wiring rather than personal weaknesses.  However just because something can be helpful does not make it optimal.

The idea that someone is only autistic if they are certified as such by a clinician is equivalent to saying you are only gay if a psychiatrist says so, that your own desires are not what determine your sexuality. In common with many other autistic people I believe that autism needs to be de-medicalised. Like homo-sexuality autism is a natural part of human diversity and needs to be recognised as such and identified by individuals, society and the medical profession rather listed in a psychiatric manual and diagnosed.

Of course autism can be identified by clinicians, in fact they need to be trained to recognise it because it affects the the way treatments for mental and physical conditions are best administered.  This doesn’t mean they are appropriate gatekeepers to autistic identity.   There is an autistic community, and like other communities we need to control our boundaries rather than have them defined by people with agendas and sensibilities that we might not feel aligned with.

* See “Adults’ Experience of an Asperger Syndrome Diagnosis Analysis of Its Emotional Meaning and Effect on Participants’ Lives”  Trevor Powell DClinPsych, Louise Acker, BSc 2015 http://journals.sagepub.com/doi/abs/10.1177/1088357615588516

I love this cartoon by the brilliant Langdon Bryce (there are lots more on his FB page the Autcast).  It deftly illustrates the way for many autistic adults one of the biggest barriers we face is a culture that regards autism solely as a disability. I think it is more accurate to regard it as a neurology that brings differences, some of which are positive and some of which can be (but are not necessarily) disabling.  In this context I often repeat the quote attributed to Einstein “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”   

The stereotypes about autism result both in autism often being unidentified because the autistic person doesn’t fit them, and also in people not daring to suggest to others that they or a family member might be autistic as this is likely to be regarded as a negative label.  It is often said that there are four times as many autistic men as autistic women, although it is finally being generally recognised that in fact women are underdiagnosed.  

It seems to me that autistic people often choose, or find themselves with, autistic partners and this can happen even if neither party is aware of autism.   Sometimes the realisation of autism comes once their child has been identified or diagnosed as autistic and the parent recognises that they are very similar to the child.  Due to the negative views  of autism that Langdon Bryce encapsulates in his cartoon, coming to this conclusion can be slow and painful.  Sometimes people are willing to accept that a family member might be autistic but are much slower to recognise the autism in themselves. (It’s interesting that it’s acceptable to state categorically “I’m not autistic” without any diagnostic process, whilst some people think that only an accredited diagnostitian can tell if someone is autistic.)

Some time ago (before I was working in the autism field)  I was talking to a neighbour,  Martin, about his thirteen year old daughter  Emma, whom I’d known since she was two.  I knew that Emma was depressed and had been seeing the school counsellor.  Martin told me how worried he and his wife were as things seemed to be getting worse, Emma was no longer seeing her friends and becoming increasingly isolated. She was feeling completely hopeless and indeed appeared suicidal. I wondered if in fact Emma had become depressed because she was isolated rather than the other way round.  Autistic people often develop intellectually more quickly than we develop emotionally and socially.  The social landscape changes rapidly for teenagers,  and autistic young people often feel alientated and no longer able to connect  with others in their age group in this new social environment.

I mentioned that Emma’s developmental trajectory - being intellectually precocious but then in adolecence starting to struggle socially-was something I’d seen in many autistic women and asked if it had occurred to Martin that this might be part of the picture.  It hadn’t. Martin thanked me for my concern and asked me to email him some information about autism in girls and women.  When I next saw him three weeks later I asked him if he’d got the information I’d sent.  He told me he’d received it but hadn’t had time to look at it.  If my child was suicidal I would be desperate to access any information that could be relevant and helpful. I was suprised and saddened that autism must have felt so aversive to Martin that he couldn’t consider it might apply to his daughter . (Later on his wife came  to a training session about autism and appeared to accept that there was autism in the family. She took her daughter to a psychologist with a good understanding of autism and  Emma recovered.)

Recently, I  spent some time talking with a self-identified neurotypical woman about her autistic partner.  She seemed concerned to understand his behaviour better and seemed happy with my responses to her situation and my suggested explanations for her husband’s behaviour.  However  when the possibility that she too may be autistic was raised,  she told me how impossible that was as she was very emotional and that’s why she struggles so much  to understand how her husband  couldn’t get what came so easily to her.  The suggestion that she might also be autistic was unacceptable to her and our conversations came to an end.   I was sad about this for both of us; for her because I didn't see how her narrative could improve her relationship with her autistic husband and children, and for me because I worried that I'd unintentionally colluded with the idea that the problem in the relationship was located in her husbands neurology.

Over time,  I’ve come across many couples where one partner is diagnosed or identified as autistic and the other partner also seems to be autistic but is not aware of this.  Even (or perhaps especially) people who work in the field are vulnerable to this misreading.  A case in point is the author, speaker and consultant Sarah Hendrickx of Hendrickx Associates who  wrote a book about being a neurotypical person in a relationship with a man with Asperger's Syndrome before realising that she is herself autistic.  Despite working in the autism field Sarah was totally unaware for years of her own autism. Ten years on from writing as a neurotypical partner, Sarah is now a proud out autistic woman. When I asked her if she minded being mentioned in this post as someone who feels her relationship is successful and endures because both she and Keith are autistic, she responded  that she was happy to be quoted  “it is entirely the case that we remain deliriously happy and deeply in love after 13+ years because we are both autistic in combination with our knowledge and tolerance of what we both need. Having a good autistic partner for me is like being able to breathe out in a world where I often feel like I'm holding my breath and know that someone can see all of who I am and will not judge or disapprove.”

My last blog post outlined some things which I think are unhelpful in relation to autism and social skills. I will now take the glass half full approach, and discuss what I think is helpful.
For me the single most helpful thing was going to Autscape where autistic people are in the majority. It was the first time I was in a situation with a level playing field socially.  I am not the only one who has felt transformed by this experience.  The confidence I gained at Autscape has enabled me to deal with a much wider variety of social situations and to build connections within the larger community.  I found that understanding how and why I am atypical made it much easier to accept myself as I am and to address my various challenges.  This understanding also enabled me to feel comfortable explaining my differences to others.  

Interestingly the book I think best addresses difficulties talking with others was not written specifically for autistics.  It is entitled “How you can talk to anyone in every situation” by Emma Sargent and Tim Fearon.  Of course there are very few people, autistic or otherwise, who could achieve this – but this is as good a guide as I’ve seen in terms of helping people improve their ability to connect socially.  The fact that is written for a general audience is a plus, as it doesn’t condescend or assume that there is an inherent deficit that needs addressing.

I think the point here is that the social differences and difficulties experienced by autistic people are not only about specific social skills, they are also about contextualising complex communications in real time.  This is why a lot of autistic people with first class degrees in psychology are hopeless in social situations.  Expecting theoretical training to enable people to perform socially is like expecting a male obstetrician to give birth.

Social skills training and social stories (which like ABA are touted everywhere as a brilliant thing for autism, without this being verified by rigorous research) assume that there will be a predictable context in which to use those skills.  This is manifestly not the case.  In real life the aim of social skill is to facilitate actual connection and connection requires more than one party.  It makes sense if connection is not happening to look at both parties and try and find a compromise.

Exhibiting “social skills” without being honest or true to yourself is not relating to others or learning social skills, rather it is acting.

Social interaction by its nature requires more than one participant This brings me to the radical idea that maybe the non-autistic participants in social interaction with an autistic person should share responsibility for finding a way of relating that works.   Non- autistic people often don’t have to think about their social style they just assume it is neutral, but as Gary Younge says in his book ‘Who we are – and should it matter in the 21st century?’  “Those who feel they are without identity do not see the need to meet people halfway and thereby fail to recognize that everyone else is doing all the travelling”.

Damian Milton calls this the “double empathy problem”  .  He suggests that the social difficulties of autistic people are caused by contrasting ways of relating rather than an autistic deficit.  Whatever the complex mechanisms underlying social intelligence, I think we can safely say that this is something that needs to be further explored and that non- autistic people training autistic people to pretend to be non-autistic is unlikely to be the best solution we can come up with.

If you are autistic or think you might be and  would like to explore this territory in more detail you might be interested in my “Exploring Identifying as Autistic” programme which aims to help people accept themselves and communicate authentically.

I’ll finish with some lovely lines from T.S Eliot’s Four Quartets that I think are relevant here.
“For last year's words belong to last year's language
And next year's words await another voice.”

.  
One thing that autistic people have in common is a social difference (of course we humans are all different in that we are each unique, what I mean here is that autistic people interact with others atypically).  I think this is because autistics are unable to pick up non-verbal and other communication that is below the level of consciousness.  Like much to do with autism, the cause of this social difference (which everyone across the contentious field of autism agrees exists) is not clear.  While I believe that the lack of social radar equipment to detect social signals is one of the main reasons for social atypicality there are other factors that also contribute to varying degrees.  
It is clear to me that issues with “theory of mind” (the very non-literal term used for the intuitive awareness that the contents or other people’s minds are different from the contents of our own mind) and what psychologists tend to call mentalising can impact severely on the ability to relate successfully to other human beings.

Autistic people are often distressed by problems mixing with others and making friends and therefore jump at the chance to learn social skills which they hope will solve these problems.   Despite the popularity of social skills training the limited research that exists suggests that such training is not very effective in real life* .  I find this totally unsurprising. Nobody has suggested giving deaf people hearing training or blind people sight training. As social skills require an ability to pick up social signals that is absent in autistic people, training is unlikely to be effective because, despite high motivation, the social radar equipment is just not there.

What I suspect happens is that the social skills sessions themselves are successful in that the people attending get to have a nice time which includes limited socialising with each other. They learn what to do in specific scenarios, they learn the steps to go through, and they have enjoyed it so they give the training good feedback.  Everybody is happy, outcome measures get nice ticks but nothing changes in the outside world, the lessons that seemed so relevant in class turn out to be irrelevant in the real world because the real world does not use the same scripts that were taught in class.

I regard this lack of “social radar” as being somewhat analogous to tone deafness in music (I am tone deaf).  I used to love singing, but unfortunately I was exposed in front of the class at age 7 as the one who was singing incorrectly and since then I have been unable to sing in public. What is particularly humiliating about this was that I was doing my best and as far as I am concerned I was singing in tune, but everyone else could hear that in fact I wasn’t.  Most autistics have had the experience with trying to engage socially, trying to get along with people, doing what we believe to be the right thing, but discovering that others think we are doing something wrong.  We tend to get rejected without ever finding out what exactly we did wrong (or we realise ourselves a week later when the time to rectify it has passed). We are just not able to “tune in” in real time to the social context we find ourselves in.  
The underlying issue is that the point of interacting socially is to connect with other people, and you don’t do this merely by exhibiting a set of skills, you do this by being your authentic self and being open to another human being.  Too many autistic people have been taught supposed “skills” which leave them in the words of Lianne Holiday Wiley “Pretending to be Normal”.  As Valerie Gaus points out in her book “Living Well on the Spectrum”  appearing “normal” does not make a person likeable and being “weird” does not necessarily make a person unlikeable.  Learning a set of rules might be necessary but it is certainly not sufficient to enable you to connect in real time with real people.

*See for example http://link.springer.com/article/10.1007/BF02179376


A recent women’s hour piece on “Late Diagnosis Autism” began with the statement that “of course there are more men and boys with the conditions”.  To me there is no “of-course” about this, it’s a non-fact; what we know is that more men and boys are diagnosed with autism. However we also know that most autistic adults are undiagnosed and many are misdiagnosed. This mismatch between popular belief and reality reminds me of the account that lesbianism was never made illegal, unlike gay male sex, because Queen Victoria didn’t believe it existed.

My guess (and at the moment we don’t have the data to know the truth of this, we can only make informed guesses) is that there are probably as many autistic women as autistic men. It’s just that, as is often the case, the men have got all the attention.  

In the groups I run for autistic people there are generally more women than men (I suspect this is because autistic women, just like non-autistic women, tend to be more social than men). Autscape (an annual conference/retreat for autistic people) seems to attract equal numbers of men and women, and a quite a few non-binary and trans people as well.  

Jane Garvey presenting the women’s hour piece wondered if women are not being identified because “we are more adept at managing or masking the symptoms”. I am not sure that this is the case; I think that, just as non-autistic women have different behaviour profiles to non-autistic men, so autistic women have different behaviour profiles to autistic men.  
I conceptualise it like paint.  Say you have yellow paint (autism), if you add it to blue paint (men) you get green paint, however if you add it to red paint (women) you get orange paint.  Of course, if you assume that autism looks like green paint you won’t identify that orange paint is autism too.  However, if you are able to split colours and see what is really going on you might notice that there is as much yellow in the orange as there is in the green.

A way to address this imbalance would be to have as many autistic people as possible talk openly about autism. We need enough of us out there so that the experiences and attitudes of specific individuals are not taken to define autism more generally. This is particularly important because autism is so heterogeneous -  autistic people are outliers in all directions – and both autistic individuals and the medical practitioners currently invested with the power to grant diagnoses are susceptible to catching on to a particular trait of autism and thinking a person can’t be autistic without it.  I’ve lost count of the number of autistic women who were initially told by professionals that they could not be autistic for invalid reasons, such as “you looked me in the eye” or “we’re having a coherent conversation”.

I think that we need to be challenging all the stereotypes about autism including that there are more autistic men than autistic women.  If you are interested in learning more about how autism affects both women and men you might like to come to one of my training sessions or indeed if you are autistic yourself or wondering if you could be, you might like to listen to comments about Exploring Identifying as Autistic and get in touch if you're interested in coming along.  As ever I welcome comments and responses to this post.