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 –
- Skills in social imitation – we observe the behaviour of those around us and replicate that behaviour, as to not appear different or attract attention.
- 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.
- Passive and shy behaviours – being shy is not uncommon, this symptom is often overlooked and passed off as normal.
- Better imagination – girls on the spectrum can often use their imagination to create and express ideas, not just imitate or copy.
- 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.
- 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.
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/.