Picture: National Autistic Society website
When I try to think about what #WorldAutismAcceptance day means to me, I hardly know where to start. The autistic experience is so ingrained into my my life now, it’s hard to remember a time when it wasn’t – or at least when I though it wasn’t.
A huge amount has been done over the last few years to not just educate and highlight what autism is (and isn’t) but also to encourage the general public to really seek to understand the experience of people who are autistic and this concept of “autism acceptance” has been central to that. To genuinely try to pause a moment and to see each individual – as I’ve heard it said “if you’ve met one autistic person… you’ve met one autistic person” – and listen to what it is they are experiencing.
I think of the work of Paula McGowan MBE, who has been relentless in her pursuit to try and make care for autistic people safer in the memory of her son Oliver and, as part of #OliversCampaign, the Health and Care Act 2022 has now been updated to require regulated service providers to ensure staff receive learning disability and autism training appropriate to their role. She has also more recently been campaigning to require the same of educational establishments.
Chris Packham has rightly been lauded for his BBC Programme, “Inside Our Autistic Minds” which took a deep and very personal look inside the minds of 4 autistic people and the way in which autism affected them. It was a groundbreaking documentary that really grappled with the reality of the experiences of each of the 4 people and used various media to tell their stories in meaningful and impactful ways.
Christine McGuinness has also been a champion of the experience of autistic women and girls and how we are systematically misunderstood. Again, in an honest and personal documentary she shared her own story alongside others that shone a light into some of the masking behaviors we often are forced to use in order to get along in life which then take their toll on our physical and mental health.
Then there’s me. Well, what can I offer? I’ll be honest not a huge amount probably and that’s fine. But I can share my experience. Why? Well, it’s because I know how hard it can be and if I have found it hard, others must too. I hope that by sharing my own story, it might help others; even if it’s just for them to know they are not alone.
I am an autistic nurse, but also an autistic mother, an autistic daughter, wife and sister. I received my diagnosis late in life and I am so glad eventually I did. For me, it was a desire to understand my own brain and how it works that led me to seek assessment but since that point, so much has happened. I’m still figuring a lot of it out but I do know I am much healthier – physically and mentally. I am able to be more authentic in my interactions and not worry so much about doing things just because they are the socially acceptable thing to do. I’ve not been to the hairdresser’s once since I received my diagnosis – something I always hated! It’s also helped my piece together parts of my own life history and process them in a way that is helpful and with a better understanding.
A graphic from the National Autistic Society (above) says that over 150,000 people are on the waiting list for assessment. The waiting lists are too long. Seeking diagnosis is not for everyone, which I understand. For me though, diagnosis has meant I am able to understand my brain better and understand how best to live a healthier and more balanced life. It has meant I can explain to those around me how they can support me and also understand why I may be a bit different which, it turn I think, reduces the likelihood of being on the receiving end of stigma and harming attitudes that some of us have carried most of our lives.
I am quite open about being autistic – that resonates quite strongly with my values – but this can lead to misunderstandings, usually non-malevolent ones! I think the hardest thing for me is when people equate autism with something or a behavior and then expect me to act in that way. I’m really happy if people just ask me and I can explain then what my needs might be or what I would find helpful. I am very fortunate to work in a healthy environment and for an employer who values diversity; I know this isn’t everyone’s experience.
Autism Acceptance, then I think, for me, is truly understanding that we are all different, although the world might tell us otherwise, and it’s about allowing that authenticity to be OK, wherever we are and whatever it is we are doing.
Receiving Consent 