05/07/2020
This is so well written and true for so many girls. Well done Jessie. Thanks for sharing your story. .melbourne
Member Shares: It was a huge shock to be formally diagnosed with autism last week. I’m aware I don’t “look autistic” and come across quite “normal” most of the time. But I’d never understood the reason my mind could work so brilliantly in some ways, whilst being so utterly vague in others. I was inexplicably baffled by simple things that others seemed to “get”. It was like I just never received the manual and no matter how hard I squinted I could never quite see what I so desperately wanted to see. For years, I just kept telling myself I needed to try harder.
It’s caused a lot of distress in the past, particularly socially. Though I present well and can hold a conversation, people haven’t invited me to parties and afterwork drinks as I wasn’t in the in-crowd, and though I found those social situations awkward I longed to be invited and to be included. I’ve been excluded, called “weird” and called a “r*tard.” I’ve tried so very hard to adapt myself to others in order to be accepted, never having the slightest idea that I was actually part of a very special club of extraordinary minds.
My diagnosis last week has been the piece I was always missing. It has been the slow curtain reveal of my authentic self that has longed to be understood. For so long she has felt unable to truly connect with others despite being desperate to. She stands in the shadows, no longer concealed but quietly determined to be seen, as she always has been.
I hope to educate others about autism and involve myself in my new, wonderful community that is full of amazing and diverse minds. I feel so delighted to have discovered where I really belong, because for over three decades I have just sort of drifted, aware that for some reason I was being left behind but didn’t understand why. And no matter how fast I ran, I just couldn’t seem to keep up.
I’m learning slowly to embrace and adore my autism and proudly label myself as “autistic” and own the term for what it is. To integrate it into my identity - a concept which I haven’t really had for 34 years. I have also upset a lot of people in the past without meaning to and that is something I must recognise, own and apologise for.
Autistic people are wonderful. We are more than the lost kid stranded in the bush on a remote mountain so often seen on the news. We are authentic, honest and act with integrity. We are are very blunt, which some people don’t like.
We get very upset when we hurt or offend someone without meaning to. We are wonderfully socially awkward and despite the misconception we can also feel great empathy, often more deeply than you can. We also usually have wonderfully bizarre senses of humour. And many of us are verbal, in fact we use often use words with great zest and creativity.
I have loved meeting my new friends within my new community. There is gentle Greg with his ability for poetry and deep love of music. Chantell has a brilliant way with words and feels each moment deeply. To- the-point Craig is a talented diver and loves the water due to the sensory experience. Witty Adam has an incredible ability to solve a Rubix cube in under one minute. He collects the cubes and adjusts the magnets inside them so they’ll rotate more easily. Jenni has built a rocket ship out of 1,969 pieces to mark the year of the moon landing and Caroline speaks seven languages fluently. Passionate Alina fled the war in Ukraine and has a brilliantly analytical mind. You can see her chewing over information as she listens intently to the conversation and she nods emphatically whenever she hears something she agrees with, which is all the time. Softly-spoken Crystal rarely talks, but is always, always listening as she paints intently on her notepad. She never misses a word. When she does decide to speak, we all listen as we love to hear what she has to say. When she laughs her whole face lights up and she seems to somehow laugh with every feature.
We are incredibly honest, sincere, authentic and gentle people who are strongly aligned to our values. Autistic culture is fascinating and strange to others, for we get straight to the point and cut to the chase yet to us it’s just natural. Each of us is completely different to one another and despite all being neurodiverse we are in no way all the same - we simply speak the same language and share the same experiences. Most of us will struggle to identify what we are feeling and all of us very much want to engage and relate to other people even though we may not naturally know how to.
Through our community and organisations like Yellow Ladybugs we are no longer isolated and no longer longing for someone to really talk to. We just meet our people and drop the cloaks we have been hiding under for so long.
It may seem strange that I wish to speak about this on social media, but after 34 years living as a question mark I feel I have a lot that I’d like to say. I can feel the girl in the shadows starting to burn brighter, and I can see the light bouncing off her as she glows. I hope I can eventually throw away my social mask and embrace myself as the wonderfully weird, quick-witted, sensitive, caring and hilariously awkward person that I am and still have people accept me for that. I am not Rainman, I am simply myself and I wish to be respected for my difference and for my strengths.
The language most of us choose to describe ourselves is “autistic.” We don’t tend to see autism as a disability and claim it rightfully as our own, rather than use person-centric language (as one would with a disability or mental health condition). So please refer to me as autistic (not “person with autism”) as that’s what I am and the language I prefer. Autistics are also gloriously literal, so in our minds why would we describe it any other way?
Though I feel I can finally breathe it’s important to realise that with a diagnosis also comes a degree of sadness. Sadness at being so skilled at masking for so long, that I flew under the radar and my autism was not spotted when it very much should have been. Like so many others, I slipped through the cracks and was not given the supports that I needed. They call us the “Lost Girls” and there are many of us who up to now have just drifted in our sadness at feeling alone. We need organisations like Yellow Ladybugs to facilitate and celebrate autistic culture and individual identity and to allow us to return home, where we can laugh and glow again.
I have become passionate about support in schools and also within the medical community and mental healthcare system. This is what Yellow Ladybugs promotes and they are essential to our world in advocating for autism and our culture. They bridge the gap between our world and the neurotypical world. Because the current standards and systems aren’t good enough and are not working. I once asked a psychiatrist if I was potentially on the spectrum, but was told I was “too social” to be autistic.
This angers me and the dangerous and misleading misconceptions about how autism presents in women and young girls needs to change. We need to advocate for the members of our community who cannot speak up for themselves yet. Autistic girls and women must be spotted sooner and offered the opportunity to have better supports and resources, and the chance to create a better future for ourselves.
We must be given the chance of a stronger sense of self. These Lost Girls need to be found.
Thanks to my mum, Judy. You have always been my champion and helped me navigate a world I didn’t understand . To all the parents and carers who are fighting for their daughters’ diagnosis and happiness, you are doing an extraordinary thing. Despite the backlash you must be receiving from specialists or various family members as your girl “doesn’t look autistic,” she probably is. Your daughters need you and I know that every late-diagnosed woman on this page and within this community would say the same thing, and want to cheer you on from the sidelines. For you are giving them an extraordinary gift that we did not have - you are giving them the chance at a future. I’m sure at times you must feel like you’re fighting a losing battle. Keep fighting, because her happiness is worth it. She deserves to live a life out of the shadows and only you can do this for her. You must be her champion.
Everyone is unique and different, but it’s very special to meet an autistic person. I’d encourage anyone to engage, ask questions and take an interest in us and how we see the world around us. We love to talk about autism but often feel we can’t, or must adapt and to share ourselves is a wonderful experience for us.
And finally, I recognise the word dump and trademark overshare. And for the first time in my life I can smile calmly, laugh and unapologetically just say “it’s my autism.”
X Jessie Instagram: .melbourne
