The New Adventure
by Lucie Kavanagh, See Change Ambassador
Autism has been a part of my life since I was fifteen and taken to a local disability service to do some voluntary work. On that day, sitting in the canteen, a woman who stood making a coffee. She was having trouble placing her teaspoon in the right position and I imagine the sounds of a group of teenagers suddenly in her midst was quite overwhelming. Her movements made me uncomfortable. As a child, I had had many rituals, especially at anxious times. I knew what it felt like to feel that that spoon wasn’t quite right.
When I started working in disability services myself, there were many stereotypes around autism and there was a very “set” way that people were perceived. This was in the 90s where Autism was seen as primarily a male condition and there were many unpleasant assumptions about lack of empathy, not to mention superhuman abilities with numbers. I heard the phrase “lost in their own world” many times and it confused me because from what I knew of the people I supported, they were constantly communicating and connecting with the world around them. Even when we didn’t understand, they persevered. There was nothing “lost” about them. In a world that constantly misunderstood them, they were unapologetically themselves.
Over the years, both because of the people I knew, and for my own interest, I read anything I could get my hands on about Autism. It featured in my college coursework and thesis, always part of my life.
Two years ago, following a series of conversations, a psychiatrist gave me a book to read called “Women and Girls with Autism Spectrum Disorder”. I told him that I would read it by our next appointment.
I read it in days.
“What did you think?” he asked when we next talked.
“It was like I could have written most of it.”
In the present day we are more aware that girls are born with autism too and some of these girls learn a skill as they grow. They learn to mask their differences. They might have the special interests that can come with autism but if they are based on subjects that are popular and appropriate for their age group, it doesn’t stand out. They are quiet, shy girls. They learn to imitate and to stand at the side-lines of groups-not popular, often bullied, but sometimes pulling it off just enough that the performance goes unnoticed. They don’t come to anyone’s attention.
They grow into teenagers and a struggle for identity might begin. Their differences fight relentlessly with the age-old desire to fit in and be part of their peer groups. Mental health difficulties might start to appear. Self-harm. Eating disorders. Depression. Anxiety. As they grow into adults, they might receive a series of mental health diagnosis’ such as bipolar disorder or borderline personality disorder.
Sometimes these women experience depression and burnout and become mentally exhausted from the effort of hiding themselves and keeping the performance going.
Some writers refer to this group of girls as “the lost girls”.
At the age of 42, I was diagnosed. It’s been a long and tiring battle.
My reactions change daily. There’s sadness and frustration about the way I was diagnosed with other conditions and the efforts I put in to understanding and working through these only to find that endless feeling of…no, this isn’t fitting.
There’s a strange relief. There’s a sense of “lightbulb moments” – thinking back to confused moments, instances where people have been angry or hurt by things I’ve said and done and I couldn’t understand why, memories of endless overthinking, of trying to sound confident and constantly trying to squash myself into situations that just didn’t make sense.
There’s a vague sense of excitement – of thinking of the differences that might not need to be hidden or worried about but can be explored and accepted. There’s a sense of wondering-where can this take me? Could this finally be the thing that makes sense?
There’s sadness and loss. Moments lost. Opportunities missed. Struggle. The fact that a depression and anxiety disorder seem to come hand in hand with trying to fit into a world and seeing only the reasons why I can’t.
There’s a sense of things coming together. A feeling of validation…ok, this is where I am. I can work with this.
A sense of wanting to share this new reality.
A sense that it might actually be ok.
“This crusade to fix herself was ending right now. She wasn’t broken. She saw and interacted with the world in a different way, but that was her. She could change her actions, change her words, change her appearance, but she couldn’t change the root of herself. At her core, she would always be autistic. People called it a disorder, but it didn’t feel like one. To her, it was simply the way she was.”
― Helen Hoang, The Kiss Quotient
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