My intention of this open letter is to raise awareness and be an advocate. It is to educate and create a better understanding. Please don't feel sorry for me. I’m fine. I just want you to listen. My hope is that this will help someone else. I am stepping out of my comfort zone to be a voice for those who need it. I'm writing this as a mum, wife, daughter, sister, friend, colleague and Autistic woman. I have always been and always will be autistic. I feel it's time I open up about it. It's not really something I tell people because the lack of understanding about autism has ensured that many of us are side-lined completely and afraid to disclose.
Autism Spectrum Disorder (ASD) is a lifelong developmental disability that affects social interaction, communication, interests and behaviour. We see the world differently. It affects just over 1% of the UK population. Chances are you know someone who is autistic (you do know) but knowing one autistic person means you just know one autistic person. We are all different and no two autistic individuals are the same.
I don’t have autism, it’s not an accessory, I am autistic. I don't 'suffer' with it, it's not an illness, it's who I am. The Autistic spectrum is not a simple scale. Not everyone is on the spectrum and ‘might be a little bit autistic’, you either are or you're not. Only those who are autistic are on the spectrum. I am entirely independent and lead a normal life in society standards.
The way autism is portrayed in the media is awful and some medical professionals still don’t understand. We are left to explain ourselves time and time again and what we need is understanding. There are so many people, like me, who were not diagnosed until adulthood. Instead anxiety and depression were the conclusion. Being diagnosed as an adult has opened a huge door in my life. I have a better understanding of myself and finally have the support I need. Its invisible but it doesn't mean it's not there.
Over the past decade, there has been an increase in Autism diagnosis in both adults and children but specifically in girls and women. This is because some girls/women mask it. We mimic behaviour and it goes unnoticed, leaving us feeling alone and that there is something wrong with us when there isn’t. Masking is exhausting yet I very much doubt many of you have seen the unmasked version of myself. It's not fake, it’s survival.
Many autistic people are perceived as naughty, difficult, weird geniuses who can’t make eye contact and have no social skills or empathy. I have average intelligence, can make eye contact, socialise and empathise. From the outside I probably look like the most boring and average woman and I am. "You don't look Autistic" - hearing this is ridiculous. Autism does not have a look. It's invisible so whatever you think it does look like, it's wrong. Telling me I look normal is not a compliment, neither is congratulating me for functioning well. "You don't act autistic" or "You can't be that autistic" because I conform more to society's expectations does not mean I am any less autistic. These comments create fear for people who are autistic or seeking a diagnosis to be open about it. It shouldn't be like that.
There are some great support services out there and I have met some truly inspiring people whilst trying to help others but the lack of general understanding about autism does not help us move forward. I am extremely lucky to have such amazing family and friends who support me but not everyone has that, and it can become completely isolating for them. I want to carry on being a voice for those who need it and create a better understanding.
If you have an experience or views that you would like to share, then please get in touch