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, Spain, Lithuania and 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.

Sad teen
Copyright SNJ.

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.

girl sitting in park
Copyright: SNJ

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!

Willingness to problem-solve alone ♦ Ability to problem-solve methodically, logically ♦ Good at academic work ♦ Very fast reasoning, logical thinking ♦ Keep calm in crisis, still able to think logically ♦ Sincere, honest, no hidden agenda ♦ Direct – gets to the truth ♦ Good focus (when interested) ♦ Good at following structure, enjoys categorisation ♦ Care about how others feel ♦ Good instinct about stuff e.g. how someone feels e.g. animals ♦ Sensory experience unique ♦ Faithful, loyal ♦ Determined, strong minded, survivor, inner confidence ♦ Try hard, put in a lot of effort, persistent ♦ Articulate ♦ Good at helping others ♦Research – looks things up, finds things out ♦ Strong moral code ♦ Not afraid of being unique, no need to be like others 

Download the whole list

Today, I have some good friends who like me for being me, however strange that is. My husband is ultra laid-back, which is just as well because everyone else in our house is on the spectrum, even the dog. Even now, I make mistakes and misinterpret situations but having a chronic illness and lots of pain meds means I'm prone to thinking "F*ck 'em, I'm just me, take it or leave it." Maybe that was always the best was to be.

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Autism in Pink Documentary

 Want to find out more? Some resources

I'd love to hear your thoughts and experiences of having a daughter with ASD or if you, yourself have a diagnosis or suspect you have autism yourself.

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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two young adults with autism. Tania is a member of the Whole School SEND Expert Reference Group for SEND Leadership, the Ofsted SEND Inspections Stakeholders Group, and sits on the Advisory Board of the Royal Holloway, University of London Centre of Gene and Cell Therapy.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
Tania Tirraoro
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vaguest

I soooo think I am on the spectrum, or at least very close to it. I am similar to my son in my intense desire to fit in and have friends. But I actually have absolutely no idea what a friend is. How do you know for sure? At what point does someone move from being an acquaintance to being a friend? This question has seriously bothered me since a psychiatrist who was assessing my son asked him, and I thought, “Oh my God, how is he supposed to answer that, he’s autistic and I can’t even answer it.” After… Read more »

My son has autism. I am pretty sure that my late grandmother had Asperger’s, and although I don’t know whether I fall under the diagnostic criteria, I can relate to a lot of it, as can my dyslexic and dyspraxic husband! My concern, however, is my younger daughter. She is very bright, very articulate, very confident (makes friends indiscriminately) and because she is all of these things the school have said they can’t see that there’s a problem. Special Needs means kids who are struggling, not kids who are top of the class. This is a mindset I can understand.… Read more »

Thanks for posting this. I am pretty sure my youngest daughter has Asperger’s and I’ve been putting off going to the GP as I know I am in for a battle – I had to fight to get my son diagnosed and the condition is MUCH more obvious in him. She’s eight now and getting increasingly anxious. I know it is time to do something, but I am dreading not being heard. Also, she says she doesn’t want to be like her brother as she sees it as a ‘disability’ I don’t know why as I am constantly praising him… Read more »

Thanks for that Tania. I’ll do that. And Sandyfaithking – the sounds EXACTLY like my daughter! Oh my goodness, those wailing tantrums…

An excellent post, once again. Well written and clear, thank you

Beth

I am 99% sure I’m on the spectrum. I have 2 children ( 1 boy , 1 girl) on the spectrum- currently only privately as the NHS wait is 3 years and it has been hell fighting a system that struggles to recognise HF autism with my son and with my daughter the battle has been even harder. Mainstream has failed both my children and I have had an educational psychologist saying my son wasn’t on the spectrum as he “smiled at someone.” My parenting was blamed. I would so love to be referred for a diagnosis but I know… Read more »

Brilliant article and thanks for mentioning PDA. I have already shared this on my PDA support group because recognising the underlying causes and difficulties shared by females on the spectrum is a really useful too for understanding out Kids with PDA too. Thank you xxx

Hi Tania My daughter who is now 24, was just diagnosed with high functioning autism. She has been depressed, anxious, eating disordered, and has much difficulty with certain sounds, songs, textures of food, social anxiety, she has been bullied a well. After talking to a friend of mine who just did a certification course for autism (she is a special needs assistant in school), she suggested my daughter may have autism. My daughter took that idea to her psychiatrist, and bingo! Finally at 24 years old we have a diagnosis for her after years of frustration, watching her terrible struggle… Read more »

Zoe

Hi, I have just come across your page on Facebook. I am going through the diagnosis process with my daughter who is 4 but it has been so hard to get anyone to take me seriously because she is very well behaved at preschool and her language is well developed if a little ‘odd’. I a almost completely sure that she has high functioning autism due to lots of symptoms she displays but I am so worried that we will fail to get a diagnosis as she doesn’t display many of the ‘classic symptoms that boys display. If I don’t… Read more »

I’ve written before about how others have suggested that I probably have aspergers, just like my son. But I’m not sure what difference a diagnosis would make to me, or my life, so I’m not pursuing it for now.

jenny

So sorry about the above, it was a mistake. I then typed a lenghty post only to lose it but now have run out of time. I will repost this evening. Thank you Tania, you may be a life saver!

jenny

Am now doubly frustrated but am sure I wrote a reply here last night. Ah well, it has gone off to the blog ether!
I am so taken by your site (and have meant for a few years now to set up something similar). It can be so very hard to navigate your way through the differnet rems, serivces (or lack of) school practice etc and this site is clear and easy to use and somewhere people can get practical useful advice, so thank you.

Laura WIlliams

Really enjoyed reading this. I was one of the participants in the Autism in Pink project and appear in the video, so pleased to see the results being publicised so that more people can learn about autistic women!

I would love to meet other autistic adults in Surrey, but I always seemed to be the only one! But I see you live in Surrey too.

Kelly Smith

I have a daughter who I suspect is on the high functioning autistic spectrum. She had a stroke at birth which left her with hemiplegia. I wont bore you with the health info but although her physical disability is slight, her ‘differences’ become ever more apparent. Now 15 I have seen my daughter gradually slip further and further into isolation and I have been powerless to stop it. Other children who ignored her, walked away when she said hello and all of those parents who never corrected their children on how to be polite sent splinters into my heart daily.… Read more »

Hi Kelly. So sorry to hear of your daughter’s difficulties. Getting her assessed by an autism specialist is a good idea – maybe the NAS has some resources on their site. You could ask the school SENCo to call in the Educational Psychologist for an assessment. Education isn’t just about academics, but also learning how to get on in the world as an adult and that includes socially. As you will have read, many girls try to fit in and ‘mask’ their difficulties but don’t quite swing it and it can lead to depression and self-esteem issues. The NAS also… Read more »

Joanna Van Rooyen

Thank you Tania for sharing this and shining a light on Girls with ASC. My daughter was diagnosed when she was 4years old and as she is high functioning, people don’t believe she has a nerological condition. She’s so good at observing others, copying behaviour, language and wearing a “cloak”. I can see her behaviours in the list too. Really interesting article, so much of ASC literature is focused on boys so its really refreshing to find things about girls !

We also have an article I wrote about my own diagnosis (link in my reply to the last comment here) and some books are in there as well. I think it’s beginning to be recognised more but the expertise has a long way to filter down! Thanks for your comment, much appreciated

Trudy Salas

Hello! A couple of people think I may have high functioning autism. I have a lot of the symptoms that I’ve seen online but I have a habit of self diagnosing and this is a huge deal. I’ve never thought about the possibility of being autistic. I used to help a classmate in elementary who had autism and it still never crossed my mind. He was a sweet boy. I taught him how to do the cha cha. Anyway, I do not know what to do. I’ve told my doctor and we’ve arranged for a screening but I’m not sure… Read more »

Hi Trudy
I suggest you print of resources about girls and autism and take them along. If your screening is by an autism expert they should, in theory, understand the differences, but if you take resources and also a list of your own symptoms and how they affect you or others around you, you can have an informed discussion

Sue Robinson

My 14 year old daughter has been suffering with social anxiety and low mood for 6 years, more progressively getting worse. I also have an 8 year old son with autism, I have often said that my daughter has asd traits and she is under camhs for her anxiety but they have just decided to asses her for asd 5 years on. She is not obviously autistic but there are subtle traits and the anxiety, lack of eye contact, inability to deal with social interactions, rigidity of following rules…..She attends a hospital school and struggles even with the 5 students… Read more »

Thanks for you comment – good luck with everything

Kathy Bowman

This is very interesting and I appreciate this type of resource. I have 2 sons who each have an ASD diagnosis. After speaking with specialists about my (now age 11) daughter, I feel that she may also be on the spectrum. After a referral to CAMHS for an assessment, I can see in advance that I am going to struggle with support for her. Is there anywhere that I can direct professionals for them to access further information about girls and Autism? Thanks in advance.

jenn_seven

I am just learning about aspergers and how it affects my family. A checklist of symptoms in women sounds like a description of my personality. I believe all of my children have inherited it from me. I’ve gone through the testing process at school for my youngest daughter. They seem largely very uninformed, and even the school psychologist seemed to want to go by the markers for boys rather than girls. I want to get an evaluation done privately, but I’m struggling to find someone who specializes in diagnosing girls. I don’t want to shortchange my daughter with a wrong… Read more »