Autism Awareness Month – The Late and Misdiagnosed Females.
Just under 2 years ago, Alex received her diagnosis of Asperger’s Syndrome at 22 years old. You may be surprised to hear that Alex is in fact just one in thousands of females who will wait until their early twenties to finally be diagnosed with Autism – some even being much older than that.
You may remember our blog post about The Chase’s Anne Hegerty who was 46 when she was watching a television programme on Asperger’s, and realised she had every characteristic of the syndrome that they listed. She was diagnosed 2 years later, which gave her all the answers to what she had been wondering the whole of her life.
This raises the question: Why is Autism not recognised in females from a much earlier age?
Statistically, 4 times more boys are diagnosed with Autism than girls, and most commonly receive their diagnosis between the ages of four and eleven.
The diagnostic criteria and research is largely biased towards male behaviour of those with ASC (Autism Spectrum Condition), leading to many girls going so long without receiving a diagnosis- some not receiving one at all.
In recent years, it has been increasingly recognised that girls with ASC possess the ability to be able to ‘mask’ their autism, and traits they do show are deemed to be more socially acceptable. This can have huge mental implications on the females, who can feel exhausted by maintaining this act.
As well as mental effects, late diagnosis can also result in many life issues. For instance – prior to The Chase, Anne was dismissed from work positions due to her inability to multitask, and had the bailiffs knocking at her door for unpaid bills when her social worker assisted in helping her to apply to the television programme which as we know has led her to become one of TV’s most famous brainboxes!
Alex is a 23 year old artist from a small village near Wakefield. I’ve always been a huge fan of Alex’s artwork – I’m constantly in awe of the pieces she creates and what a unique style she has! But, who’d have thought, that this creativity actually led to her being told she “couldn’t possibly be autistic” following a 6 month long assessment!
“When I disagreed with them, one of the women conducting the assessment shouted at me, telling me to give her a reason why she should diagnose me while she banged her fists against the table, shouting it at me over and over again”
This wasn’t even the first time Alex was misdiagnosed.
As a female myself, I can relate to the difficulties girls face growing up; the immense social pressures to act a certain way, look a certain way, have certain interests etc.
What I can’t relate to, however, is how it must feel to grow up under these existing pressures, whilst also having undiagnosed Autism – acknowledging that you are different from all the other kids in the playground, but having no understanding as to why.
For Alex, this mainly meant keeping herself to herself, but found that could often make her a target for bullies.
Characteristics – How Autism can present itself differently in women
Social Impairments play a huge part in the diagnosis of Asperger’s Syndrome: those who have it often lack empathy, emotional reciprocity, may display characteristics similar to those of selective mutism, and seek out time alone when overloaded by other people.
This can vary in females, and growing research has shown that females with ASC have:
- Increased social imitation skills – aware of the need to socialise, won’t initiate contact but can ‘go through the motions’
- A tendency to appear shy or passive
- Better imagination
- Better linguistics abilities
- Interests that focus on animals or people.
Prior to her diagnosis, Alex found she would force herself into social situations she wouldn’t want to take part in, feeling pressured and as though it was the norm of someone of her age.
“I think not being understood and not understanding myself has made me very hard on myself, I don’t really ever give myself a break or let myself off.
It’s a bit like putting on a costume, I can put a different one on depending on where I’m going and who I’m with; I’m essentially a terrible actor playing different people every day in order to hide who I actually am.”
Being able to imitate these communication skills can hinder ASC from being spotted in females at a much earlier stage in their lives, and is still not included in the diagnostic criteria for professionals to be able to distinguish.
Alex also has really focused interests; she explains that she can become really obsessed with certain things for long periods when she feels out of control with her life “for example when I moved to university, I think I needed something big to focus on to help me deal with the changes that I couldn’t control”.
Studies are beginning to acknowledge that in females, these enhanced interests appear as more ‘socially acceptable’, which often puts down the idea that these girls could possibly have Asperger’s – just as the assessor did in Alex’s case.
A main interest of Alex’s has always been art, which led to her securing a place at Leeds College of Art where she continued to develop her unique style, and experiment with different mediums.
It was around this same time when Alex moved into a house with her friend from her course, whose older brother was diagnosed with Asperger’s at a young age. The friend recognised similarities in Alex’s behaviour that reminded her of her older brother.
Alex then saved up for a session with a psychologist, hoping to receive the answers and the diagnosis she had been looking for. “I didn’t, however. She was convinced I had Borderline Personality Disorder. After the session I went and read about BPD which caused me a lot of stress as I could relate to a lot of the symptoms and felt even more confused about who I was and what was going on.”
Already distressed, Alex visited a specialist centre in Leeds where she then faced the ordeal mentioned earlier in that a woman shouted in her face asking why she should give her a diagnosis.
In her second year at University and living away from home made Alex increasingly more aware of her differences from others – whilst other students were out boozing and on nights out, Alex couldn’t think of much worse.
Desperate for answers and exhausted with the multiple mis-diagnosis’, she decided not to let the lady from the Specialist Clinic get her down, and with the help of her boyfriend saved for an appointment with a psychiatrist in Manchester.
The gentleman interviewed both Alex and her boyfriend, and afterwards told her that he knew she was autistic the minute she walked through his door.
Although misdiagnosis is still a wide problem, it is one that is beginning to get the recognition it needs.
Examples of what is happening…
- Anne Hegerty has spoken about her Asperger’s in the I’m a Celeb jungle, and has continued to be an advocate for those diagnosed late ever since. She has spoken to the National Autistic Society about the diagnosis and characteristics of her Autism, educating more young women on traits that they may have.
- Autistica (UK’s leading autism research charity) have recently announced a new grant for researchers looking at under-represented groups identified in their funding review; these include women, LGBTQI+, BAME and older adults.
- Prof. Francesca Happé who is a Professor of Cognitive Neuroscience has released books and spoken at conferences across the UK on the subject. She is a huge online activist and extremely passionate to have the voices of these women heard.
- The National Autistic Society have created an online module that is funded by Pears Foundation that assists clinicians in diagnosing autism in women and girls.
- The Curly Hair Project was founded by Alis Rowe (also diagnosed at 22!), and provides resources that help those on the autistic spectrum understand and accept who they are. She creates short films and books with a leading autistic character, and is all based upon her own experiences.
It is hugely important that the activism and awareness on this subject is spread and implemented in the diagnostic criteria so that girls can begin to understand at a much younger age who they are and have a reasoning behind this.
This will enable them to begin acceptance at an earlier stage, and decrease the distress of being forced into uncomfortable positions – just how Alex was.
If you need support with social communication or language difficulties related to autism, please feel free to get in touch with me on email@example.com, or give us a call on 0800 024 8646.