I recently helped a friend with her niece, who had just been diagnosed with Borderline Personality Disorder. My friend strongly felt that this diagnosis was wrong, and after reading more about my symptoms and experiences with ASD believed that her niece “Anne” (name changed) was actually Autistic. The symptoms were all there – social issues, anxiety, depression, sensory issues, self-harm… the list goes on. After hearing about Anne’s personal experiences, including being bullied at school due to a simple social misunderstanding, I urged my friend to get Anne reassessed for a proper diagnosis. I felt instantly connected to Anne – we both experienced bullying at school due to not fully understanding social rules and etiquette and our inability to “read between the lines”, we both experienced depression, anxiety, self-harmed and were even both diagnosed with BPD… It was as if I was watching teenage me struggling all over again. I felt the pain, the frustration at being misunderstood and the confusion of misunderstanding the world around me.

I followed up with my friend about Anne’s progress about a week later. She had just met with her school counsellor and shared her belief that she may be autistic. This was what the counsellor said:

“You can’t be autistic. You have friendships!”

After hearing this, I was furious. 30 years of self-doubt and frustration washed over me as I remembered the misdiagnosis, the misinformation, and the misunderstandings. My whole life I had exhibited the classic signs of my unique form of Autism, but due to a lack of knowledge and research I had been missed. And it was still happening.

We are different, so why doesn’t anyone know about us?

After I calmed down, I realised that it is not this counsellor’s fault. They are the product of the lack of research and knowledge about girls with Autism. Why is this so? Why do we have a voice but nobody seems to listen? As Dr Lori Ernsperger, PhD, BCDA-D explains:

“Obtaining an ASD diagnosis for a female can be very challenging with scant research and available answers from professionals. Autism was first reported by Leo Kanner in 1943 and since that time there has been thousands of journal articles and wide-spread international attention. Yet, there is a paucity of scholarly research focused on females with ASD” (Ernsberger n.d.).

How are we different?

Many people I have encountered have expressed disbelief that I am Autistic. Their experiences with Autism showed a complete disparity to their observation of my behaviour. To my friends and acquaintances, I seemed perfectly normal. I made friends, was sociable, intelligent and had a sense of humour. In their eyes I had never exhibited any of the commonly known Autistic behaviours – I made eye contact, I acted “normally”, I was well-spoken and thoughtful, I didn’t “meltdown” or hit myself or others. To them, I was just like everybody else. However, appearances can be deceiving.

According to Dr Ernsberger, girls on the spectrum often exhibit –

  1. Skills in social imitation – we observe the behaviour of those around us and replicate that behaviour, as to not appear different or attract attention.
  2. A desire for social interaction – while large groups can be overwhelming, many girls on the spectrum enjoy one on one or small group interactions, which is in direct conflict with the perception that those with ASD are “shut off” from the world and do not socialise.
  3. Passive and shy behaviours – being shy is not uncommon, this symptom is often overlooked and passed off as normal.
  4. Better imagination – girls on the spectrum can often use their imagination to create and express ideas, not just imitate or copy.
  5. Better linguistic capabilities, especially during developing years – many girls on the spectrum have a well formed vocabulary from a young age, whereas people may perceive people with ASD to be non-verbal or have a limited vocabulary.
  6. Interest that focus on animals or people – most children have an interest in a particular animal or their favourite celebrity or hero, so it is often overlooked when girls with ASD show this tendency.

The problem with recognition and getting a proper diagnosis

ASD girls know we’re different. We constantly observe others and see the differences, we feel them. Inside, we know something is wrong. Translating that feeling into words and getting a professional to understand us is often difficult, and it’s frustrating when they try to tell us we are “normal” or when they entertain ideas of personality disorders. We know we’re not “normal”, and we know we’re not curable – we know we have been this way our entire lives.

“…no matter how high my score was on the assessment I took a couple of years ago at the age of 50, my psychologist insisted that those characteristics were caused by childhood trauma, not Asperger’s” (Unknown author n.d., quoted in Ernsberger 2016.).

Some physicians will downright refuse to consider ASD, even when all the facts are right there. Don’t try and tell us our issues are caused by traumas, our traumas are caused by Autism! Similarly, they can often be too quick to jump to personality disorders, perhaps because they are more familiar.

“When women walk through the door with the subtle characteristics of ASD, the doctor will shift to other disorders (Happe 2013, quoted in Ernsberger 2016). These disorders include personality disorders, mood disorders, depression, anxiety, OCD, or even eating disorders.”

With all of these hurdles in place, it is no surprise that girls and women on the spectrum are undiagnosed. It is estimated that amongst intellectually able individuals with ASD, the ratio of girls to boys is 1:10 (Dworzynski et al 2012, quoted in Egerton and Carpenter 2016). This means that for every ten intellectually able boys diagnosed; only one girl is diagnosed. How can this be right? Is Autism in girls simply less prevalent due to biological or genetic factors, or is it a case of misrepresentation? I believe the latter. If I went undiagnosed for over 30 years, and if girls like Anne are being told they can’t be Autistic because they have friends, how many other girls and women out there are flying under the radar?

What we can do

To battle these statistics and overcome the lack of knowledge about girls with ASD, we need to talk about it. Create conversations with other parents, your doctor, your family, your psychologist, and your friends. Blog about it, post Facebook statuses about it, share articles and information. The “Girls and Autism: Flying under the Radar” booklet listed in the references is a fantastic tool to handout to professionals and teachers involved in your children’s life to increase their awareness of our differences. The more awareness we create, the more we can overcome the adversity that girls on the spectrum face every day. The more awareness created, the more public interest, funding, fundraising and research is generated. This creates a trickle-down effect to health care professionals and those that are taking care of our children.

I don’t want to see girls like Anne go through what I went through, the isolation, the ostracism, the anxiety and the frustration. The world is hard enough without having to go it alone.

 

 

References:

Egerton, Jo and Barry Carpenter. 2016. “Girls and Autism: Flying Under the Radar.” http://www.nasen.org.uk/resources/resources.girls-and-autism-flying-under-the-radar.html.

Ernsberger, Dr Lori. 2016.  “Girls and Women on the Autism Spectrum.” Accessed June 1st, http://www.amaze.org.au/girls-and-women-on-the-autism-spectrum/.

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28 thoughts on “The invisible girls on the Autism Spectrum

  1. Thanks for the article. I have two children with Asperger’s syndrome – a boy and a girl. Very different presentations, interests, skills and weaknesses. I thank a change in paediatrician (knowing I wasn’t getting anywhere – so exit stage right)! The move meant my daughter’s needs were recognised, rather than having a label of “rude” and “argumentative”. We were able to better understand her difficulty in processing social situations which led to heightened anxiety, her sensory behaviours and specific learning needs. We now have an ongoing need to educate those working with her about them to ensure she maximises her potential.

    Liked by 3 people

    1. I’m a school psychologist at a middle school, and when I hear about girls being “rude and argumentative” I immediately wonder about ASD. I work hard at getting the correct identification so girls can get the services they need. I wrote about raising a son with Asperger’s and working with kids with ASD in Beyond Rain Man. http://www.beyondrainman.com

      Liked by 1 person

      1. That’s fantastic that you are willing to consider ASD as an option, Anne. It is so prevalent these days yet not many health professionals are willing to consider it as an option. Thank you for sharing 🙂

        Liked by 1 person

  2. Thank you for your post. My dx came at age 19 as “autistic features”. I was hesitantly diagnosed with Asperger’s in 2003. My biggest issue is the sensory one, pretty specific to children and dogs. That seems to be something people can’t or don’t want to accept. It is an effort to go out in public. When I get home, I need sanctuary, not more noise. I’m concerned about the lack of QUIET affordable housing for autistic people. I need to see something happen in the future as both my parents are dead and I do not have the best relationship with the family member I live with.

    Liked by 1 person

    1. I’m so sorry to hear about your situation. I also lost my mother 2 years ago and I know how isolating it can be. I like to think she is watching over me and is guiding me in life from wherever she is. Thanks for reading my blog x

      Liked by 3 people

    2. Good luck. I’m 29, married but we live apart due to me having my nan and my husband having his mom to live with (No we can’t live together as 4 people. Imagine bringing a super religious woman into your life where you have to relinquish the control you have for cultural reasons etc). My dad lives on a canal boat and my sister is down the road. If my nan passes away I have no idea what will happen because if I have to move in with my mother in law and husband I’m going to jump off something. There’s ony certain foods I can eat due to intolerances (gastrointestinal problems) linked to autism, she’s indonesian and she will never understand autism, she happily tells me how people in indonesia share everything freely and I sit there on edge because it sounds like my biggest nightmare, I’d have to wake up at 5am or not get into a heaven I’m not bothered about getting into. I hope things work out that I’m financially independent and I’m hoping she goes home to her family that I know she wants to do, but I’m scared if I run out of excuses and end up cut off from the small world i already have or the money I currently have because that will be hobbies go bye bye. As well as the worry she will class any of those hobbies impure (haram). Even worse I don’t want children, don’t know if I can have children and worry what will happen if she finds out. She’s already cried over me being on the pill because she thinks my bleeding comes from god and thought I was sterile.
      I hope things work out for the best. I hope you discover the control and security you need in life and I hope your situation isn’t anything like mine.

      Like

  3. My daughter is 13 and was only diagnosed last year as high functioning autistic. We suspected she was autistic when she was two but was told she’s a girl she can’t possibly be autistic, she looks us in the eyes there is no way she’s autistic, she interacts with so she isn’t autistic.
    It was a relief to finally get the diagnosis but people still don’t believe she’s autistic including the school.
    Family and friends see her as only shy and a little quirky. The school insists she’s just a normal teen who is defiant and lazy.
    I wish people would understand that autism is a spectrum and it’s more than Rain Man, I also wish they could understand that boys and girls will present differently.

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  4. SWAN:Scottish Women’s Autism Network was established in 2012 to offer support to women and girls and their families and to raise levels of knowledge and understanding. We can be contacted via swan.scotland@gmail.com and have a Facebook page. Dr Catriona Stewart who is one of SWAN’s co-founders based her PhD research on girls with Asperger’s syndrome, is a member of the National Autism Project Autistic Advisors panel and on their Experts list and recently worked for Scottish Autism to help them develop an online resource for women and girls, the Right Click programme.

    Liked by 1 person

    1. I am honoured that you visited my blog and shared it on your group’s Facebook page! Please pass on my sincere thanks to Dr Stewart for the work she is doing with girls on the spectrum; after finally receiving my diagnosis after 30 years of living as a stranger in my own skin I am SO grateful for people who bring much needed awareness and knowledge to the grey area that is females with ASD. Please let me know if I can do anything to help you in your organisation; I volunteer my time and writing skills to several organisations that assist individuals with Autism and I will be happy to help in any way I can.

      Thank you
      Catherine

      Like

  5. It’s lovely to make contact and thank you so much for your offer; I hope we can keep in touch. Reading what I posted in your comments, it’s a bit self-publicising, isn’t it? So thank you for your kind reply. But I wanted you – and your readers – to know there is a network of women and practitioners ‘out there’ working in this area. It’s really encouraging that more women are writing, speaking, articulating in many ways – photography and art too – the experiences and perspectives of what has been for so long an almost invisible population. The Nasen leaflet ‘Flying under the Radar’ looks very useful, thanks for the link! We produced a couple of very short leaflets, just after SWAN started, from conversations among the women; the first is for health professionals and the other is tips for women on getting the most out of healthcare appointments. They can be accessed via our new website (in development!) at http://www.swanscotland.com. Links have also been published in the new Autism Toolkit launched by the Royal College of General Practitioners available at http://www.rcgp.org.uk/clinical-and-research/toolkits/asd-toolkit.aspx.

    Liked by 1 person

  6. Hi I have a 12 year old girl that has been under the mental health services from the age of 4 she has very hight level of anxiety and ocd witch is a very big problem in Ower life’s iv just had her refurd back as it is taking over Ower life’s thay say she was not asd but all the simtons are there would be nice to get some feedback and read reviews on outher people thank you so much karen Jacobs

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  7. Unfortunately this article is at best misleading. For example one of the critical tests in almost every country (Except the USA) is instinctive reading of body language (often the “reading the emotion in the eyes” test). If you can read body language instinctively you don’t have ASD or Asperger’s. Also Dr Ernsberger seems to not have a clue about the differences between Asperger’s and Autism. For example my GF’s daughter is nearly 4 and has Autism and even though she was playing spelling games on the computer at less than 3 years old still does not really talk. I am male and have Asperger’s and it was common for people to comment on how advanced my speech was when I was very young. This is only one example but it is the definition of the difference between the two conditions used in the UK and Europe. As for girls having a better imagination that is absolute bunkum. I would like to see just one peer reviewed medical journal article that supports that idea. Also as for the desire for social interaction Dr Ernsberger is merely spouting a stereotype that has no basis in reality. Men want social interaction just as much as women we just do it differently. The fact this Dr Ernsberger published on Amaze.org says it all.

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    1. Hi Gordon,

      Thank you for your comment. While I understand your anecdotal experiences may differ from Dr Ermsberger’s information, her comments are in fact based in science. Check out her references at the bottom of her article for a list of studies she cites to evidence her comments, also, I have found some of my own.

      Using google, I found many more studies that demonstrate the differences she discusses in her article, but as you asked for just one, here is a peer reviewed study that notes the differences (including imaginative) between high functioning male and female adults on the spectrum:

      A Behavioral Comparison of Male and Female Adults with High Functioning Autism Spectrum Conditions
      Lai, et al. 2011. http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0020835

      This section is particularly relevant:
      “An unexpected result that warrants further attention is the more pronounced self-reported autistic traits, as measured by the AQ, in adult females with ASC. Along with the observation of fewer current symptoms on the ADOS, these results suggest that in adulthood, females show fewer, but perceive more autistic features than males.”

      The AQ is referring to the Autism Spectrum Quotient, which measures autistic traits in social skills, attention switching, attention to detail, communication, and imagination.

      Regarding social interaction, I will quote a recently published peer reviewed study that states: “in line with the reports of clinicians and people with ASC, there is empirical evidence that girls and women with ASC show higher social motivation and a greater capacity for traditional friendships than do males with ASC (Head et al. 2014; Sedgewick et al. 2015).”
      (Bargiela, S., Steward, R. & Mandy, W. J. 2016) http://link.springer.com/article/10.1007/s10803-016-2872-8?wt_mc=Internal.Event.1.SEM.ArticleAuthorOnlineFirst

      This study also mentions many differences in males and females with ASD, and cites the references to more studies and evidence.

      Also, you may not be aware, but in Australia (where Dr Ermsberger practices) we use the DSM-5, which wrapped Asperger’s Syndrome and Autism into one spectrum we call Autism Spectrum Disorder, or Autism Spectrum Conditions. We no longer refer to Asperger’s as being a separate condition.

      The fact that Dr Ermsberger is publishing this information on Amaze.org is irrelevant to whether it is factual or not, regardless, it is great for spreading awareness of the differences in females on the spectrum. I went over 30 years without a diagnosis due to lack of awareness surrounding females with ASD, so I am very grateful that there is more information being published that is easily accessible to the general public so that girls like me do not have to live without a diagnosis.

      Like

  8. Having grown up as the black sheep of not only my family, my neighborhood, but just about every person I dealt with, I finally found the connection. I was relieved more than anything to have the diagnosis nearly 4 years ago, and paradoxically, it still cuts me to the quick why I was denied these services for so many years. This made most of my life a living hell trying to prove to others, especially when it comes to employment, that I wasn’t given enough of a chance. My heart goes out to all the woman who went throughout the prime of life without these much-needed serves. That’s what scares me the most about the idea of Trump winning the election.

    Like

  9. My 15 yr old girl is still flying under the radar, now on waiting list for neurodevelopmental assessment again. My daughter was seen by behavioural therapist up til 11yrs old then not needed until last yr when self harm and eating problems added on top of behaviours we learnt to work with. Lack of friendships and her only friends leaving school fir college.
    Oh I hope right diagnosis and support finally land before she leaves next yr for college.

    Like

  10. Interesting article, but as a male with ASD, it’d have to point out that many of the things you listed as traits of girls with ASD, also can apply to boys. For instance, exhibit all the gauss you list, except #5. I believe it probably has more to do with worth one’s specific traits than gender. Still, an interesting article, thank you for sharing.

    Like

  11. Reblogged this on Memory of the Star and commented:
    Hello, everyone! This article caught my eye and since I was so incredibly busy today that I couldn’t finish a blog post while juggling everything else, I decided to just reblog a post I thought was interesting. I am turning off likes and comments to encourage my audience to like and comment the original post. Thank you!

    Liked by 1 person

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