Linda told me about how her autistic daughter Fiona experienced social anxiety and difficulty talking with people outside of a formal situation*.  Fiona had noticed how people gravitate to Linda and tell her their problems, and said "but you're real, you're not pretending" Linda said "I didn't like to tell her that sometimes I am pretending".

To me this exposed the difference between a false self and the necessity sometimes to create an appearance that differs from your internal experience.  Linda does sometimes pretend because, like everyone, she is not always interested in other people's stories; she sometimes wants to curl up in a corner with a glass of wine rather than support a friend in need.  However, her overview is that the long term is more important than the short term; she does want to support that friend, she'd just rather not do it now when the friend happens to need it.  Part of friendship is overriding your own wishes when the needs of your friend are greater than your need.  So yes Linda is pretending, but it isn't an overarching pretence, just an awareness that sometimes she needs to override aspects of her complex self to behave in a way that is congruent with her values.

The sort of pretending that many autistic people feel obliged to do in order to "pass" is of another order, it is more like acting - mimicking a whole set of responses that have no connection to their inner world but that they believe are "normal". These pretences are consciously thought out responses that express nothing of the individual. This is quite different to the responses Linda referred to which meant putting forward an aspect of herself that did not at that moment coincide with her preferences.

The need to pretend to be someone else, someone you believe will be perceived as normal, is something experienced by many autistic people, especially before we are diagnosed and know why we feel so different.  Almost 20 years ago Lianne Holiday Wiley encapsulated this idea in the title of her book "Pretending to be Normal".  More recently autism diagnosticians have explained their failure to diagnose autistic women, thus skewing the prevalence figures and perpetuating the tendency to see autism as male, by suggesting that women "mask" autistic traits. (This could also be explained by the blinkers worn by diagnosticians when exercising their prerogative to gatekeep autism).

As I mentioned in my last blog post there has been a social media campaign inviting people to #TakeOffTheMask.  I feel ambivalent about this because, as I describe above, everybody has some level of social mask. This is necessary to get along with others; to compromise and contextualise your own wants and needs in relation to your values and the wants and needs of others in your community.

Unfortunately, most people in the autistic community have come across someone who has been discriminated against as a result of disclosing they are autistic.  I even know people who have lost their jobs because of this.   While it is beneficial to be authentic and I guess the desire to promote authenticity and acceptance of diversity was behind the #TakeOffTheMask, campaign I think we need to recognise that it is necessary for everyone - autistic or not - to “mask” sometimes.  It is not always safe or appropriate for autistic people to remove their mask, especially if they have been wearing it for so long they are not sure what lies underneath.  Re-evaluating a life through a new lens, be it an autism lens or conversion to a new religion or ideology requires thoughtful work, and is not something that is usually best achieved by casting aside all that has gone before.  I suggest we need to understand and deconstruct our masks rather than hastily remove them.

*As always in my blog posts I use real situations but disguise the identities of the individuals concerned

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.

Autism and women seems to be one of the bright new shiny things (that actually if you were looking were always there) currently being picked up by the media.  The plus side of this is that we (autistic women) are becoming more visible in our various guises.  This enables more women to recognise their autism, and parents of autistic girls to consider the possibility that perhaps their daughter might be autistic rather than deliberately difficult and awkward.  
It is sometimes suggested there should be special criteria for diagnosing women.  I disagree with this as I would argue that the underlying traits of autism are the same they just manifest differently in different people (and sex is a major difference between people).  Think about colour mixing, if you add yellow to blue you get green, which is very different to the purple you get if you add yellow to red.  However the yellow is still yellow, you just have to be aware that it looks different depending on how much is present and what colour it is being mixed with.

I don’t think medical practitioners should be the gatekeepers for autism any more than they should be the gatekeepers of sexuality. (I believe autism like homosexuality should be removed from diagnostic manuals and re categorised as a naturally occurring part of human diversity.)  Like homosexuality autism can only now be identified by observing behaviour, and this is necessarily contextual and dependant on the knowledge and sensitivity of the observer. Diagnostians have been known to refuse a diagnosis of autism on various spurious grounds my own list includes “he/she looked me in the eye”  (this to me is like telling someone they are not gay because they have flirted with someone of the opposite sex – it demonstrates a very restrictive and stereotyped understanding of the condition as well as ignoring the fact that people are able to behave in ways that do not reflect their inner feelings). My colleague at AutAngel, David Mery found a more extensive list gathered on the Everyday Aspie blog.  

However we are where we are, and currently medical practitioners are the people authorised to diagnose autism, and however much self-diagnosis with peer confirmation might be accepted within the autistic community many people only feel they are “really” have a right to claim their autistic identity after the benedictionof an official diagnosis.
So while autistic women are getting some airing in the media the idea (I would say myth) that there are more autistic men than women does not seem to be challenged, the posited ratio just seems to move a little.  I believe that there are as many autistic women as men, I base this belief in observing the world around me and the people I come across both those identifying and/or diagnosed as autistic and others.  I realise that people can brandish statistics at me that demonstrate I am wrong, but this begs the question of the validity of these statistics (just like you can find a quote in the bible supporting most views, you can gather statistics to show most anything) as they won’t include undiagnosed women and therefore could just be showing up the bias of diagnosticians. Not to mention the fact that due to the low profile of autistic women until recently women were very unlikely to even present for diagnosis.

Interestingly if you are a woman wondering if you might be autistic I think there are better books available to support you in examining this than there are for men in this position.  I have always recommended Women from Another Planet, as it is written by autistic women and unlike individual autobiographies, offers many different perspectives on what autistic lives can look like. This was published in 2003 so these women featured in it are real ground breakers in terms of being aware of their autism and willing and able to share their stories.   It is idiosyncratically organised (as befits something the product of a group of early autistic adaptors working together) and densely packed with a rich variety of experiences and viewpoints.

A more recent book on the subject is Women and Girls with Autism Spectrum Disorder by Sarah Hendrickx. This is organised in a more immediately accessible and convenient manner as well as giving diverse women the opportunity to speak to us. Sarah’s own voice comes through with engaging honesty and succeeds in addressing difficult topics with the consideration they deserve while maintaining her light humorous touch.  With the small caveat that Sarah uses the term “women with autism” where I would prefer “autistic women”  I would unreservedly recommend this book and hope that it will help increase the awareness that women are just as likely to be autistic as men. 

In fact it seems to me that there are many couples where both partners are autistic but only the man is diagnosed - because autism is so stigmatised it can be hard to address this but I think that decreasing stigma, and increasing awareness of autistic women will be helpful to these couples and society generally.