On 3rd October 2021 I’m running the ‘virtual’ London Marathon for the National Autistic Society and today is my ‘Coming Out’ day…
On 22nd June 2021 I was diagnosed Autistic after 45 years of searching for answers to unfathomable questions and being mis-diagnosed with Anxiety disorders. I AM anxious, all of the time in fact, but that’s because I am Autistic not because I am mentally ill per se. Today I am owning My Autism, and the Awesome that it also provides . I don’t need you to believe in the Awesome, I just need to.
To those who I could never express how I felt to or who I walked away from because of that, who’s name I forgot, or who thought I was quiet or aloof, or to those I interrupted when I tried to guess when to speak in a room full of people, these are just a few of the many parts of my Autism. Please try to understand that I’ve been a square peg in a round hole all my life.
As a neurodiverse person in a neurotypical world I was discriminated against from day one because society expects everyone to be neurotypical, I am not. I socially mask pretty much all of the time in order to fit in, and with most people in my life, and I have various masks (…so if you’re thinking, she doesn’t look autistic, well yes that’s because I’ve spent the last 45 years crafting the art of masking – I’m a chameleon and I’m good at it, mostly). I have to work incredibly hard to do the job I do as a trainer and running my own company, but my own suffering is what drives me to help others through my work.
Today I’m removing the mask to reveal the real me, and publicly in writing, because writing is what I find easiest and where I can express myself, and because masking is totally exhausting! Sadly masking is also a strong predictor of suicide in Autistics, it is dangerous. I personally cannot run and mask at the same time so I am running solo on 3rd October and will do the Marathon virtually, all 26.2 miles of it!
I’m doing this for me as part of my acceptance of being Autistic, but also to raise awareness of Autism in girls and women in the hope that we stop missing girls who are autistic because they are well behaved and quiet at school and because they are high achievers or successful. They are often successful because of the awesome side of their Autism. If you know or support girls with relentless anxiety (or depression) please stop to question whether there is more to this person than you or they yet know, or whether the professionals have failed to find the fundamental issue. I found my own answer months earlier from a social media post describing girls with Autism, I knew immediately. It wasn’t a clinical professional who found the answer, it was me, though it still required a clinical professional to medically diagnose it. It should never have taken 45 difficult years.
My other hope in raising awareness is to discourage comments like “we’re all a bit autistic” or “well, we’re all on the spectrum somewhere.” Only if 99% are at zero autism and 1% full. Such statements, often well intended, take my own and other neurodiverse people’s experiences and re-group us as neurotypical, which we are clinically proven (to the required level) not to be, and many of us have fought tirelessly to prove that and to find the truth to our suffering. It’s like saying we’re all a bit pregnant when someone is feeling nauseous and a bit bloated. Such statements invalidate 45 years of painful searching, daily anxiety, chronic IBS, and invalidate each and every time I’ve felt that life is not worth living. If you believe such statements as your truth keep it for you, or maybe research it and see if it is in fact true rather than something you’ve heard along the way. For me it does more harm than good to my experience, but I cannot express that to you directly when you say it because of how my Autism effects me.
If you’d like to help me on 3rd October, and all the other #lostgirls of my generation, you might like to support my fundraising for the National Autistic Society, and we all thank you in advance for your generosity 💖 #nomorelostgirls #autism https://www.justgiving.com/fundraising/Jane-McNeice
I often come across Autistic people that prefer the company of animals over people, and the presumption that all Autistic people are animal lovers. I am not. Or at least if I am, there’s a huge barrier getting in the way. I cannot love animals in the way that I’d like to because they frighten me. I find them unpredictable, especially dogs!
About three months ago I was out running and an ‘off the leash’ dog chased me jumping up and barking at me. The owner could not get control of the dog. I said “I’m Autistic and I’m frightened of dogs” but he didn’t seem to comprehend. He eventually took control of the dog and I ran off, went into immediate Autistic meltdown, and cried all the way home while feeling unable to breathe.
Two weeks after that my husband announced one Saturday night that ‘WE’ were getting a dog the following Monday afternoon. I was devastated! It made me feel depressed, and all I could think was ‘my husband could have lived without a dog, I could not live WITH one.’ A dog would compromise my very existence. I resisted, resented, voiced my concerns, gave every practical reason that it was a stupid thing to do, and lost the campaign. Never once did I utter the words “It’s the dog or me?” because I still live with the ‘Lost Girl’ insecurities that the dog would be chosen, not me. Many Autistic people will relate to that, perhaps more so the late diagnosed like myself.
So, the dog arrived… I dragged my heels at the office on the Monday not wanting to leave and go home, and for the succeeding weeks pretended the dog did not even exist.
Over the last 10 weeks I have slowly, but not fully, come to terms with Chester’s presence. He is teaching me about him, and he is teaching me about me.
He’s taught me how much I need my Autistic obsessions/SPINS to survive and that one of the reasons I struggle with him is that he compromises my ability to partake in them. He sabotages my obsessions, and conspires against my decompression moments.
But… we are slowly reaching an acceptance of one another, finding a way of living together. Emotionally I’m still working on a connection, but practically we are getting there. In the last two weeks he has become my new running buddy. He can’t yet do the half marathons as he’s too young, but he runs the first 5 miles with me, and his dad meets us and takes him home while I do the rest. We have a companionship kind of relationship.
Chester and I share many characteristics. We both have off the charts determination. He could easily run further but is too young at the moment for the longer distances. His fire red coat is as red as the fire in my belly for positive change for Autistic people, and he too is constantly restless, and always hungry!
As for my husband, well, he’s still in the blooming dog house!!!! 😂