Change must begin with us.
Updated: Feb 25
Being autistic doesn't always just equate to not fitting in with non autistics. . Many of us struggle to find our place within the autistic community as well. . The harder we've worked at appearing 'normal' throughout our lives can actually work against us as adults. . In fact, it's the very thing that prevents many of us from receiving a diagnosis at all. . Sometimes, our autism is so well hidden that others don't believe in it's existence in us unless we carry classic traits such as rocking, spinning, all the very characteristics attached to our rigid understandings of what autism is. . We're often seen as attention seeking, needing a label to feel important, as frauds. . We can feel absolutely defeated because we come to understand we're not truly accepted anywhere. . We're the 'in-between'. . Someone once told me I was too invested in living in the autistic world and needed to come back to the neurotypical world and push myself, challenge myself harder to fit in. . And here's my reality, my lived experience.. . For 33 years of my life, I believed I was neurotypical. I worked harder than hard to appear neurotypical. In fact, I appeared more neurotypical than many actual neurotypicals. . I fit in. I socialise better than most. I was a class clown at school. . But these things hid so many sinister thoughts and feelings about myself. . I felt there was something wrong with me. . I sat in therapy, many different therapies from the age of 16. . I read books, sought philosophies and religions, invested in programs, did everything I possibly could to change myself so that my inside would match my outside. . I dismissed my own needs, thoughts and feelings in order to get along, please others, be approved of. . But worst of all, I completely underestimated my autistic brilliance, of which I am overwhelmingly proud of today. . Yet often, when I say "I'm autistic", I'm doubted. . I'm doubted by people who don't understand that for many autistics, their struggle, their difference, their coping, their processing is a completely internalised experience that we've learnt in all the hardest ways to hide. . The message is well and truly loud and clear: if you are not like everyone else, you are disordered. . Autistic, gay, transgender, hell there was even a time where being left handed was taboo and trained out of children. . We've heard it all before. We're still hearing it. . The world talks about us like we're a walking bag of fundamental deficits that need repairing, healing, curing. . And don't we know it. . We feel it, harder than anyone else. . When our families have a difficult time with the physical manifestations of our internalised self hatred as young people (and for many, as adults) in the forms of addiction, self harm, school refusal, eating disorders, extreme risk taking behaviours.. . We feel it. . When others say "But this isn't REAL autism", we feel it. . This is where masking, hiding, internalising, self preservation finds us today. . We don't have a choice about our neurology. . We don't have a choice about someone deciding to remove the word 'Aspergers' and call us all Autistic. . We didn't choose to be represented by a puzzle piece. . Yes, it's confusing. But when I don't understand something, I look into it. . I don't sit back and tell millions of people they're wrong about their identity, who they are, how they've struggled, what they've experienced. . It's a spectrum. . Not a linear representation of how better or worse we are in terms of our autism. . We didn't choose the language, the functioning labels, the descriptions, the parts of us considered deficits. . Non autistics did. . "High functioning" means our challenges are overlooked. . "Low functioning" means our abilities are overlooked. . A spectrum is a collection of colours, such as a rainbow, produced by separation of the components of light by their different degrees of refraction according to wavelength (Googled it). . Science evolves, produces new information. . Yet many people remain totally resistant to move forward with new understandings. . Autism is NOT just a child rocking in a corner. . Autism is NOT just a child who avoids eye contact. . Autism is NOT just a child. . And here's the strangest part of all.. . When we are judged as frauds for disclosing our autism because we are not like autistic children, what are adults really saying? . How much hope and faith are we truly investing into early intervention and therapies for autistic children if we don't believe they can grow and develop into intelligent, insightful, capable contributing adults? . Because here we are..and yet we're doubted as being on the spectrum. . We go around and around in circles, attempting to treat the very characteristics of autism in children such as high anxiety that is actually fed by non acceptance and continual challenging who our children are. . The world is a terrifying place to live when the message is that we are disordered, less than, in need of correction, we are too intense, not enough, too loud, too quiet and have unreliable thoughts and feelings. . We need a rethink. And it has to start with us. . And this right here, this is terrifying. . And I know, we've been through enough. . But we must commit to undoing these rigid social constructs for our autistic children and those to come.