Ask Autistic Advocates is an interview series that celebrates autism and how it enhances our lives.
Each week, a new interviewee gives readers a glimpse into what makes them, them, and how autism has helped shaped their lives. Today we’re getting to know Clare Heley.
Tell us a bit about yourself
I’m Clare, 36 years young and I live with my two cats in a little village not far from Leeds, West Yorkshire.
I’m a rather colourful person; I love to paint my nails all kinds of funky designs. I’m very creative and my special interest at the moment is drawing intricate outline designs involving stars. It’s like meditation for me when I’m not doing so great mentally.
I also enjoy reading, writing, (not arithmetic 😉) walking in nature, photography and watching Disney/true to life films.
When and why did you start actively advocating?
Bit of background: I’ve had a tough few months since August 2019 when I lost my job while my Dad was very ill. He passed away at the end of September and some new information came up from my Mum about my childhood. This made me even more sure that I’m autistic, so as soon as I had time (and the headspace) I began looking into Autism and how it affected me.
I started my new Instagram account on 8th February this year to get a feel for it, and I posted my first YouTube videos on Autism in February and March.
I suppose I started Actively Advocating in March, but I really got into it when I did the 30 Days of Autism Acceptance Challenge on Instagram throughout April.
It was then I opened up to the subject much more and looked further into things like autistic head cannons and ableism – terms I’d not come across before.
I decided to start advocating partly to discover more about who I am (and, in the beginning, to take my mind off of losing my Dad) also to give autistic adults/females a voice, especially undiagnosed individuals like myself. I love to share my experiences and insights in the hope of helping others.
What do you love the most about being autistic?
It would have to be my attention to detail and hyper focus. I love to get lost in a creative project or spend an hour painting my nails.
People often comment “Wow! That must have taken ages!!” But I don’t really think of it that way. It’s something that comes naturally to me and is totally worth the time it takes.
Related: Ask Autistic Advocates: Katie Zehr
What was the biggest challenge you’ve faced and how did you overcome it?
The biggest challenge was having to come to terms with my Dad’s terminal illness (we were really close the last few years) and everything that needed carried out after he passed.
Being his next of kin, I was responsible for funeral arrangements, his finances, clearing his belongings–the lot. I did have some help/lots of support from friends & family at the time which was amazing.
I’m not entirely sure how I got through it, to be honest. I tried my best to stay organized, otherwise I would have fallen apart. I had an A4 notebook where I wrote down everything I had to do and kept all important documents in folders.
After a while, I had one to one counselling and later went to a bereavement group, both at the Hospice where he spent his final few days. The staff there were incredible from the start. I also found it helpful to write down my thoughts before bed, listen to music & go for walks, taking photos of my surroundings/achievements.
Giving myself time to heal has been a massive help in overcoming this life changing challenge that no one can prepare for.
What myth would you like to bust?
Not really a myth but something I’ve heard many autistic people think should not be a thing: high-/low-functioning labels. Many believer they are not helpful.
I don’t know that much about (so called) low-functioning autism, but if someone is classed as such, I can imagine a lot of emphasis is put on their difficulties. So they could have skills and talents which might not be noticed or valued by society.
If, like me, you are thought of as high-functioning, you are expected to live much more independently. Because we can act like we are OK, we often pass as neurotypical, even though we can struggle some, if not all days with simple tasks such as making a phone call.
In fact, this ability to mask can end up having a very detrimental effect on our self esteem and mental health. Functioning labels can stand in the way of individuals, especially supposed high-functioning autistics, getting the support they need to have an enjoyable and meaningful life.
If you could go back in time and tell your younger-self one thing, what would it be?
There is a reason that you feel so lost, shy and out of place. It’s known as Autism and in the future you will realise that it’s OK to be different–we are all a work in progress. You will have some amazing times and one day things will make more sense.
