Autism in Pink: Helping to identify undiagnosed girls with ASD

Autism used to be thought to be mainly a male preserve – “the extreme male brain” as described by Prof. Simon Baron-Cohen. Figures from a recent Prevalence Study by the NAS show that it is more than three times more prevalent in boys than in girls But increasingly, autism, and in particular Asperger Syndrome, is being more recognised in girls. We are not talking here about the severe, non-verbal classic autism; that is not easy to miss.

In the UK, Dr Judith Gould, Consultant Clinical Psychologist and Director at the NAS Lorna Wing Centre for Autism, is working on understanding why females with autism are under-diagnosed. The report explains that Dr Gould is developing female-specific diagnostic tests and training. She believes that in the UK, the more subtle manifestations of autism in women are now beginning to be identified. But this is only very recent; health and educational professionals are not automatically being given training on females and autism.

I have written before about Asperger’s and girls, when Angela and I attended a talk given by Dr Tony Attwood on the subject last year. Many of the descriptions of autism in females really hit home and, as the parent of two sons with Asperger’s that shouldn’t particularly come as a surprise. I’ve now been referred for my own diagnosis, which I know will come as a huge sigh of relief.

The National Autistic Society has recently completed an EU-funded,  multi-national project, Autism in Pink, about women and girls and the Prevalence Study mentioned above, was produced for this project. Autism in Pink has also produced a video (embedded below) that is available in English and with subtitled versions in the other countries involved, SpainLithuaniaand Portugal. The Autism in Pink website is also available in these languages.

The interesting thing for me about the video is how diverse the women with autism are – in just the same way males with ASDs cover the spectrum, but with a different set of behavioural markers.  There are those whose frailties are all too visible on the surface and who need much more support, but who may not have been given a correct diagnosis in the past. Then there are those who are capable of functioning in the wider world and may who even choose a career that suits their aptitudes. These women have learned to “assimilate” – to copy the behaviour of peers to help them fit in. On the surface, at least.

From my own experience, the “assimilated” girl or woman can feel very much like she’s wearing a metaphorical cloak, patched together from aspects of other people that she admires. She draws it around herself when in contact with other people. Sometimes the cloak fits beautifully, but at other times, when tired, stressed or overwhelmed by sensory stimuli (smells, noise, too many people), it can slip off. With close friends, who know her well, it can be left at the door. The word ‘disguised’ is probably better than ‘assimilated’. Those who don’t learn to do this can find living in the real world very difficult indeed.

I think if you are female with undiagnosed Asperger’s, particularly someone who has learned to largely cope in the world, you probably know very well that inside, you are quite different from other people. You may well have spent your teens wondering just why the popular girls were popular, when to you, they seemed unremarkable. But you wanted a taste of popularity, so you began to observe those who possessed this quality, mentally analysing what they did and how to do it yourself. This can work well in many situations though unfortunately, popularity isn’t usually something that can be imitated.

You might even frequently rehearse upcoming situations in your head; how to remember to be gracious and friendly and to remember to ask how people are and not talk about yourself or your own interests too much, using your “skills” and deploying them when the opportunity arises. It just becomes a part of you.

However, in reality, situations often do not go according to plan and, being you, you probably don’t have a back up, because you focused too much on the way you wanted the date/ meeting/ presentation to go. The result might not be pretty.

My own philosophy in life has always been “Fake it till you make it” As a young TV reporter, I used to be terrified of going out to interview people, but I learned to throw on my cloak and get by. Back then, as now, I found I could get along with straight-talkers but those who were sly, gossipy or who had another agenda, completely confused me. I was no good at the game-playing and this was always a disadvantage. Unfortunately in the media world there are far more of the latter than the former.

For those parents who have a daughter with diagnosed or suspected Asperger’s or another autism spectrum condition such as Pathological Demand Avoidance, these new developments are hugely positive. But the problem remains that to the uninitiated parent, teacher or GP, identifying this condition that can often be subtle, isn’t easy. Meltdowns on the other hand can be put down to tantrums, being spoiled or “a right madam”.

First of all, parents have to be alert to these differences and ready to do something about them. As a child, I often heard “You’re weird”, or “You have an odd sense of humour”. And that was from certain members of my own family. At school, I would be lost in my vivid thoughts as they played out in front of my eyes like a movie, only to be bullied by the nasty girl for apparently ‘staring’ at her when in fact, I had just made the mistake of sitting opposite her though my focus was on my own private movie screen. Nobody liked this girl, but pretended they did so she didn’t pick on them. I didn’t know how to ‘pretend’ to like someone, so I just never spoke to her – because you don’t speak to people you don’t like – why would you? But to the bully, this passivity was a magnet; an easy mark.

Then I discovered that boys liked me and that gave me more confidence but really, I was swimming with sharks without a cage. But that’s a whole other story and a very complex one at that though it won’t be unfamiliar to other women like me. It is also something that mothers of ASD daughters need to be alert to, especially those girls who have not had the security of a loving dad or father figure.

You may also find that you daughter suffers from extreme anxiety, depression or low self-esteem. Links are now being found between autism and anorexia and other eating disorders. It’s to be hoped that practitioners in the Child & Adolescent Mental Health Service (CAMHS) are given this information from Autism in Pink as well.

On the positive side, the volunteers on the Autism in Pink project also found that their autism brought them many strengths. Below is a list that you should definitely share and explore with your autistic daughters – you can definitely do some creative confidence building. It’s just a list, but I know special needs mums are a resourceful lot and if you do make a great resource, please share it!

Source: https://specialneedsjungle.com