Tuesday 24 April 2018

Autism Acceptance Month 2018 Day 24: W is for Women

BSL: woman

W is for Women (and girls)

Thank you, Eli and Tammy!

This is an important subject, one to which I am likely to return on other occasions, because autism in women has long been overlooked. There are so many people who still see autism as a "male" thing (not helped by groups like Autism $peaks unnecessarily genderising it through their reasoning behind their choice of blue). I've lost track of the number of times I've been told that I can't possibly be autistic purely because I'm female. Even in 2018. It's one of the reasons I wasn't picked up at a younger age. And that is the story for many others.

In recent years awareness, knowledge and understanding of autism in women has increased, which is brilliant. There's still progress to be made, but things are improving, and I want to acknowledge and recognise that. Now we have the Autism Women's Network, Autism Women's Empowerment Project and Fighting Inequality for Girls on the Spectrum. AWN is US-based; AWE and FIGS are both here in the UK. I would like to get more involved with them in future, when I have the energy. They seem to be doing excellent work and I hope they can grow and become much more prominent in society. Please do support them and check out their websites and Facebook pages.

Accessing autism assessment and diagnosis for females can be more challenging than for males, partly because there do seem to be differences in presentation but also because it is not something that is considered for females as prominently or widely as for males. There are years of misdiagnosis, of focus on mental-health difficulties that are actually symptoms of underlying autism-related issues, unsuitable treatment for the mental illnesses and lack of understanding by professionals of the specific neurology. If you are a female who has only come to the realisation as an adult that you are autistic, accessing an assessment is a real postcode lottery. I am aware that I am lucky, living where I am - there are many areas (both here in the UK and beyond) that do not have adult assessment services. Something I would like to work on in the future is campaigning to ensure that every area in the UK has an adult assessment service (although with the Tories undermining and cutting the NHS left, right and centre that isn't going to happen anytime soon; it will not, however, stop me from trying). Every person who suspects they may be autistic should be able to access an assessment.

More and more women are being diagnosed autistic as adults, and more girls are being identified while they are children. These means that the diagnostic ratio of males to females has shifted from the old figure of 10:1 to a mix ranging from 2:1 to 6:1 depending on which source you look at (not least because a lot of statistics are likely to be garnered from a single country, and each country's diagnostic rates vary). More females being diagnosed is a good thing, because it means they are being picked up and thus getting access to services and supports appropriate for them (rather than things designed for NTs).

It is essential that society is more informed about autism in females and that all recognise and accept that it is not limited to males. too many females have suffered the effects of this lack of understanding and recognition. There is better understanding than there was 5, 10, 20 years ago, and that is something to appreciate, although there are still gaps that need more work in order for them to be closed. Here's to closing the gender gap!

There is a tendency among undiagnosed autistic females to mask and camouflage, to present as NT by copying and mimicking others around them, particularly other girls, in order to avoid being bullied. This has short-term benefits but causes long-term damage. Alternatively, being true to one's autistic self and behaving autistically can lead to a lot of bullying. Trust me on that one - I opted for the latter and paid the price (but I would rather be me than try to mask - it's too exhausting). And when a girl develops an eating disorder, starts self-harming or has other mental illnesses, autism is considered as a possibility far too infrequently. It's no wonder so many of us end up feeling like we are the broken ones! I have struggled thus far to find statistics on the proportion of autistic females with a history of eating disorders and/or self-harm but I anticipate it being extremely high.

And THIS is where autism acceptance plays a crucial role: if autistic behaviours, mannerisms, ways of thinking and so on were accepted as a normal part of the human experience, there would be no need for the suffering that so many of us have dealt with. It would no longer be acceptable for teachers, parents and so on to say things like, "Have you tried changing your behaviour to fit in? Try not do [insert autistic behaviour, thought style, etc] and then the others won't pick on you."

Autism acceptance means a no-tolerance approach to bullying of autistics just for being autistic.

Autism acceptance means not demanding we change our very self in order to satisfy other people and in order to supposedly protect us from the cruelty of others.

Autism acceptance means standing up to and calling out those who tell us to change ourselves and who victim-shame us.

Autism acceptance means making sure women and girls have access to assessments, diagnosis and appropriate support.

Autism acceptance means recognising, not denying, the lived experiences of autistic women and girls; means not telling someone she cannot be autistic just because of her gender.

Accepting your identity as an autistic female can sometimes be more difficult due to gender bias, but it is perfectly possible to do that. Autistic females are becoming more prominent and known about, and are providing excellent examples for the next generation of autistic females. They are fantastic advocates and amazing women, some of whom are personal friends of mine.

Prominent autistic women whose work I recommend:
  • Amy Sequenzia
  • Carly Fleischmann
  • Ann Memmott
  • Julia Bascom
  • Erin Human 
  • Paula Durbin-Westby 
  • Jeanette Purkis
  • Judy Endow
(I am not including Lydia Brown of Autistic Hoya or Amythest Schaber as they are non-binary; I am also intentionally not including Temple Grandin because although she has made some contributions, many of her beliefs and attitudes are highly problematic and come from a place of limited understanding of the struggles many of us face and from a position of great privilege - I will discuss this dichotomy and the problematic nature of her another time.) I think there are probably others so this list is not comprehensive; these are the ones who come to mind. I will edit this list if I suddenly think of someone else - it wa written rather late at night so brain was not fully functional.

NOS Magazine: 50+ autistic people you should know 

Apologies for the brevity, but the weather today, particularly the fluctuating air pressure, has played absolute havoc with both my joints and my cognitive abilities. Rest assured I will be writing much more on this subject at a later date, including talking about my own experiences as an undiagnosed girl.

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