By George Watts, Chair of Steering Group
We know that autistic girls are usually diagnosed later than autistic boys. I am one of many late diagnosed autistic women who sometimes reflects on how different my life might have been if anyone had known I was autistic at a younger age. I’ll admit I’m a little bitter that none of the many mental health professionals I saw were able to lead me to this important self-knowledge. I am also a mother seeking a diagnosis for my daughter which is an incredibly frustrating process and very much depends on whether the clinician who finally assesses her has the clinical expertise to recognise how an autistic girl presents. Every day I come across autistic mothers and daughters just like us who are facing the same challenges. All these things would seem to point to the usefulness of the concept of ‘female autism’ – we want people to understand what ‘female autism’ looks like so these women and girls can be diagnosed sooner and fewer of us are misdiagnosed with other mental health conditions. Yet I am not at all comfortable with the term ‘female autism’ and this blog is an attempt to explain why I feel so strongly about this.
Until recent years almost all autism research was done using participants who were autistic boys. For a long time, this presentation of autism was seen as the only presentation which a few girls happened to fit into, particularly if they also had severe learning disabilities. Over time the gender ratio has slowly changed, and I’m sure will continue to change, but autism knowledge is still very much based on what is known about boys. The tools we use to screen for and diagnose autism are still very much looking for what autism looks like in boys. Therefore, again, it seems logical for us to say that we need to be defining ‘female autism’ and developing distinct tools to assess this different type of autism. There is research underway attempting to do just this.
My problem with this is that there is no neat dividing line between ‘male autism’ and ‘female autism’. All that I’ve described could also be divided in ways that do not focus specifically on gender. For example, since the research has been done on boys it is harder for clinicians to recognise how autism presents differently in adults. They often talk to people’s families about what they were like as a child. Those of us who have been through the diagnostic process as an adult often describe it as patronising because the tools are designed to be used with children. Many adults who aren’t diagnosed until later in life have developed coping strategies which can make it harder for clinicians to see that we’re autistic. Acting in a non-autistic way (masking) becomes so ingrained – because it has been drummed into us throughout our lives that it’s not ok to be ourselves – that we do not know how to drop that mask and it takes a skilled clinician to see through this. It’s also extremely common for us to develop mental health conditions such as anxiety and/or depression in response to being autistic in a world that is not well suited to our way of being. These complicate the way we present still further. Therefore you could argue that we also need tools that are sensitive to diagnosing adults. Does this then mean that ‘Child Autism’ and ‘Adult Autism’ are different types of autism? I hope it’s obvious that it is not the autism but the people who are different, children become adults!
A similar line of reasoning could be used to describe the diagnostic trajectory of autistic POC, another marginalised group who tend to be diagnosed later than their white counterparts. Autistic POC may also present in a slightly different way, they may also mask in ways that make it harder for clinicians to recognise white boy autism. Since they are diagnosed later, they will be obviously then be older at the point of diagnosis and like adults will have had more years of finding ways to fit in in this non-autistic world. In some parts of the world, notably the US, it is decidedly more dangerous to appear socially atypical while also being a POC. For more on this take a look at the hashtag #AutisticWhileBlack . Again, we need clinicians to be able to recognise autism within this group but does this mean we should start talking in terms of ‘White Autism’ and ‘POC Autism’? The fact that different people are different does not necessarily mean there are different types of autism.
While there are other marginalised groups to which this same pattern could be applied (such as the diagnostic overshadowing that takes place when people are multiply disabled), the last category I want to focus on is gender. Autistic people are more like to be trans, nonbinary or any of the many other marginalised gender identities. (I’m going to use marginalised gender identities here as a term to encompass all non-cis genders, this choice is based on the guidance here http://www.bogireadstheworld.com/why-women-nonbinary-is-not-a-good-idea/ ). Again people in this group tend to be diagnosed later and we need clinicians to get better at recognising autism in these people. But by this point I’m hoping you’re shouting at your screens about how ridiculous it would be to try to divide autism into ‘Cis Autism’ and ‘Marginalised Gender Identity Autism’. The fact that people are different does not equate to different types of autism.
The problem with the term ‘female autism’ is it essentialises the femininity of the experience of being autistic in this way. Yet there is nothing about this which is unique to autistic women and girls. When I first self-diagnosed I spent a lot of time reading blogs and books by other autistic women, the resonance of their words was a profound comfort to me during the uncertain time while I was waiting for a formal diagnosis. However, I would argue that this resonance wasn’t because they were female, it was because they are similar autistic people to me. Increasingly I find myself meeting men who are questioning whether they might be autistic and I find myself pointing them toward resources on autistic women and girls because this is the type of autistic person they are. This has nothing to do with their gender identity, they are not female type autistics any more than women who have been diagnosed using current tools are extreme male type autistics!
So what? What difference does any of this make? Isn’t it ‘just semantics’?
The reason I’m passionate about this subject is because ideas can be harmful. Semantics have a huge amount of influence on people’s perceptions of and responses to autistic people. A pertinent example is the harm that has been done through people believing the idea of autism as a form of extreme maleness. Even when we are trying to help, trying to redress the balance to support autistic women and girls after such past ignorance we can still do harm. This is because we inadvertently erase the experiences of people who don’t fit into binary categories like male and female.
There are many checklists for ‘female autism’ online these days. They say things like ‘has more typical interests such as animals’, ‘is creative’ or ‘mimics the behaviour of their peers to fit in’. I know many non-female autistic people who are happily obsessed with animals, extremely creative and excel at masking (the hugely popular #TakeTheMaskOff campaign was founded by a cis autistic man!) None of these things have anything to do with their gender, these are simply indicators of the type of autistic people they are.
Dividing autism according to gender (or other categories as described above) only creates more barriers for autistic people to overcome. Since the stereotypes of autism are based on historical concepts of autism, autistic people who don’t neatly fit into those stereotypes are often accused of not being truly autistic (even when they have been formally diagnosed) because they don’t look autistic enough. (It is worth mentioning that as a result of these many barriers to diagnosis, self-diagnosis should be regarded as valid, identifying as autistic is not something people do lightly).
A big part of the problem is that we simply do not have a good term yet for autistic people who don’t present in the ways that have been most well documented in the literature. This is a question the project team have been chewing over for a long time now and we would welcome ideas for new succinct ways to describe less well known/ invisible / under-recognised / less well documented / not yet researched / different ways of being autistic. Some people use the terms internalising vs externalising autistic people which I think can be useful to an extent but with the caveat that these categories are not set but are likely to fluctuate both day to day and across the lifespan. Some people like to talk about the ‘autisms’, suggesting there may be many different autisms that we have yet to discover. I however believe autism is one unified concept which simply presents differently across different people.
You might well be asking yourselves what on earth am I doing chairing the steering group of a research project that is looking specifically at the experiences of autistic girls if I am so against the idea of ‘female autism’? This research is exploring the experiences and identities of autistic girls. I believe this is a useful area to learn more about because I think it will tell us new things about autism, that’s autism as a whole rather than just within the context of autistic girls. We need to look at autism in this context because there still isn’t much knowledge about autistic girls and what there is hasn’t used such creative approaches to tap into this knowledge. We do know that many autistic girls and women do seem to present in a slightly different way and therefore this makes it easier to identify who we should be working with. Research needs us to work within neat categories irrespective of how messy the autistic population is. Had we asked for funding to look at ‘the experiences of autistic people of many different types who don’t easily fit in with what has been previously documented’ I very much doubt this would have been funded. I do hope that as knowledge in this area evolves we will develop new terms which will allow us to do more nuanced research in future. What we’re learning from the project is of course relevant to autistic girls and we very much hope will be used to support other autistic girls in future. However, I hope I have demonstrated that these things are in no way exclusive to autistic girls. We need clinicians experienced enough to recognise autism using diagnostic tools which are appropriate for all autistic people. These need to be age appropriate, ethnicity appropriate and gender appropriate. We hope that by learning more about one marginalised group we will produce knowledge that will benefit many marginalised autistic people and move us far beyond ‘female autism’.