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, but I wear sports bras and crop tops to support my chest.

Another sensory thing I have is noise, I have very sensitive ears, this does not stop me from enjoying myself. I cope with this by using headphones, if there is work being done or a lot of drilling in the neighbourhood, I will wear my headphones and if I am going out with my friends at night-time, we would choose bars with a bit of atmosphere but also somewhere that is not too noisy. My favourite place to go in Dublin is Street 66.

Crowds and queuing can be a problem too however this depends on the situation for me, If I am in the Airport because one of my special interests is travel, I will be too focused on my trip to mind the crowd. When I am shopping, I tend to pick times of the day where it isn’t too busy and if I have to face the crowd, I will sit in a quiet coffee shop for a few minutes before and after to stop me from going into sensory overload.

There are many positives to being autistic – I am honest and determined and if I want to do something, I will find a way to do it. I can be very honest and be very blunt. This is a good thing because people will always prefer the truth (even if it hurts), but I might come across as rude without meaning to. Another positive is great attention to detail, this is great because I can pick up something or see something that others cannot see.

This is a positive trait especially when it comes to the area of employment. I am very resilient and I am an open book I will accept people with differences because we are all human beings at the end of the day. I can be very creative I like to cross stitch and sometimes I like to write poems. Another positive is I have the expertise in an area I am interested in.

For me, as an autistic adult, I find communication is key, and the more specific and less vague the instruction is the better. Instead of saying “clean up” say “clean the counter, sweep the floor”.

I have a lot to thank my parents, grandparents, aunts uncles, cousins, and a range of services that I have accessed when it comes to life skills. My life skills have improved in recent years and I am now at the point where I could live independently if I wanted to (with a little bit of help when it comes to certain things I have not encountered before). My mum has been my rock over the years, and I have a lot to thank her for. I would not be the advocate or half the woman I am without her. I would not be able to face life so positively without her encouraging me.

What I would say to parents of autistic children is communicate clearly with your children and most importantly Do not give up and be patient, your child will shine when the time is right for them to do so.


I have never known a life without seizures or autism and to be honest, I do not want to. I embrace life the way I am, and I face the challenges in a positive manner. Even though PCDH19 epilepsy can be sometimes a pain to deal with I still cannot imagine my life without the challenges of it. Now that I am very controlled, but still have the odd seizure here and there but am as controlled as can be. I have big plans for the future. I know I will not achieve these plans overnight, but I am determined to face big challenges ahead of me.


There is hope for the future for all of us!


Thank you for reading.


CLAIRE ROONEY


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The PCDH19 Alliance is a registered non-profit by the Internal Revenue Service under Section 501 (c)(3). We are 100% volunteer run. All the funds we raise go directly to funding research, supporting families, raising awareness, and finding a cure.

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