I’m just starting this post with a quote that I find very important when thinking about high functioning autism.
“(so called) mild autism doesn’t mean one experiences autism mildly… it means you experience their autism mildly”Adam Walton
It is very much relevant to girls on the spectrum who go to great extents to mask their autism in an attempt to appear “normal”.
Masking: When autistic people present or perform social behaviors that are considered neurotypical.
I was diagnosed with autism in March 2016. It came about after my therapist suggested it. I remember her first introducing the idea to me and being quite shocked, almost offended. I didn’t see autism as something that people like me would have. When I thought of autism, I thought of the vulnerable and disabled people that my parents work with – not me. They work with autistic people so how could they not know? The therapist showed me a leaflet and told me to highlight the things that affected me in either green, amber or red to represent the extent to which they related to me. I was surprised to see that a lot of them described things that I experienced. Ultimately, it was up to me whether to be assessed or not and I just thought that if it could give me answers that I should go for it. I also knew that the people at school with autism got a lot more support than I was at the time. I wanted to be more supported because school was awful so any way to make it easier was a bonus. I would be able to access practical support and be able to advocate for myself.
I think if I had been diagnosed as a child, that perhaps things would be different. I may have been over supported and as a result, be less independent and more limited but as a teenager, I could have control over what support I was given.
I was involved very little in the actual assessment. They mostly asked my parents lots of questions about my development and childhood. My high school teachers also had to fill in a questionnaire. I was only there for a very short time. I was asked questions, had to do a role play and read a book. I remember before I got the autism assessment, my parents told me not to ‘pretend’ to be someone I wasn’t. I think they thought that I might ‘act’ autistic to get the diagnosis. I tried to act normal. I was told that there were no right or wrong answers but I knew that certain answers would result in a diagnosis and some wouldn’t. I struggled with the role play and also making eye contact with the assessor. I also felt quite nervous as my parents and someone else was watching through a one- way screen. I didn’t read any blogs, watch youtube videos or read books on autism before my diagnosis because I didn’t want it to influence me. All I did was read a leaflet given to me by my therapist. I wasn’t an expert in autism so I didn’t know the ‘right’ answers or relevant things to share with the clinicians. I was just myself.
I wasn’t surprised when I got the diagnosis because I’d known my whole life that I was different. I think that the biggest thing that my autism diagnosis has given me is being able to understand myself and know who I am. I have been able to reconcile with myself for growing up thinking the way that I was, was my fault. I actually think now, that it is more of societies fault for not accommodating for anyone different.
So why didn’t I get a diagnosis sooner?
It is largely accepted that there is a gender bias in Autism diagnoses with more males being diagnosed than females. I believe that there are many flaws in both societies perceptions of autism and also in the way it is viewed by health professionals. Many women go undiagnosed because they present differently to autistic men. Much of the indicators for autism don’t take into account gender differences in autism. Women are generally better at hiding their autism compared to men and are simply viewed as a ‘bit different’ or ‘shy’. For some people, living behind a facade is fine and they get by but for many women, it is exhausting to be constantly pretending that you are someone you’re not; only being yourself when you are in a ‘safe’ place. Women get diagnosed with every other mental health condition but autism because they are compared to the male representation. They gain labels that they don’t fit.
But the main reason…..
As said above, masking is when autistic people present or perform social behaviours that are considered neurotypical.
Masking has different motivations in different people however ultimately it comes from a desire to fit in. Sometimes, things like personal safety can depend on masking and therefore a person needs to mask. It is often a subconscious effort: behaviours learnt by observing others, adjusting the way we speak to match the tone of others, learning through watching TV programme or practicing making certain facial expressions.
At school, I often felt different to everyone else. Micro insults meant that I changed my behaviours. Small comments led to me fine tuning my behaviour to eradicate anything that made me appear different. These habits became ingrained in me.
Some ways that masking may be shown is:
- Forcing eye contact (This can be very uncomfortable and also make you appear shifty or on edge if it isn’t done right)
- Imitating friends or peers (This is often detrimental as leads to loss of identity)
- Disguising stimming (such as using leg jerking or nail biting as more socially acceptable stims)
- Forming a mental bank of rehearsed social cues
The result of masking can be very detrimental to autistic people. It is utterly exhausting to be constantly repressing your true self and leads to a loss of identity as well as potential mental health issues.
So if the consequences are so bad, why do we mask?
- To succeed in school or a job
- Avoid stigma or bullying
- To make friends
- To fit in
- To feel like you belong
Ultimately, masking is a reason why many autistic females go undiagnosed and if I look back at my childhood, it is apparent that I spent a lot of it masking.
Really, it is no wonder that my autism went undiagnosed. I was visibly a bit different but not different enough to warrant a diagnosis. Something needs to change in the autism diagnosis process to enable girls to get a crucial diagnosis before reaching a crisis point.