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Through Claire's Eyes: A Woman's Thoughts on Living with Autism and PCDH19 Epilepsy

April is autism acceptance month. In this blog today I want parents of girls to be aware that not all girls show the “typical autism traits”. It is estimated that approximately 60% of girls with PCDH19 will be somewhere on the autism spectrum and/or are Neurodivergent, this includes ADD/ADHD/PDA/ ODD/dyslexia/dyspraxia. I was not diagnosed with Autism until I was 12, I was always the quiet nerdy child that would prefer sitting reading a book than playing or mixing with my peers. I was always academically inclined, but I struggled socially. I had a lot of tantrums and meltdowns due to sensory overload. Girls are better at masking their autism, meaning that they will repeat behaviors that their peers do, if someone says “I like gaming” a girl would say “I like gaming too” even though deep down she has no interest in it. Autistic children want to make friends and struggle with it. From an autistic point of view wearing the “mask” can be very mentally draining.

Living as an autistic adult at 30 years old– I embrace life and I see the world differently from the average person. I want to see the world changed for the better. I am an advocate for disability and LGBT rights. my special interests are disability rights, LGBT rights, Travel, and GAA (Gaelic games, Gaelic football, hurling, and camogie). When it comes to special interests’ girls’ special interests tend to be more sociable than boys (but not all the time) an example of this is a boy’s special interest might be train spotting, but a girl’s special interest might be travel in general.

I volunteer with various charities here in Ireland and am on the steering group of Full Spectrum Ireland. I think and see the world through pictures which is a good thing. I am really good at remembering phone numbers and If I am interested in something, I will retain the information and learn quicker. When I am really into something, I will have a deep focus on it and if it is a task, I will want it done right.

Sensory issues can be a challenge, but I have coping mechanisms on how to handle them. I can only wear certain materials and am sensitive when it comes to choosing what I wear. I still like to have some style an example of this is I cannot wear lace or denim. If I have to wear something that is either of those materials, I wear cotton underneath it e.g., my previous job in Penney’s (Primark in the UK and USA) was jeans and the worktop. Every day I would put on a pair of leggings under my Jeans to decrease sensitivity. Another item I cannot wear are bras,