Today is #autismawareness or #autismacceptance day.
I've been thinking a lot over the last several days on what I want to say about this day and about my experience being an #actuallyautistic adult.
There are so many stereotypes about autism, partly because of the media and groups like Autism $peaks, but also because autism itself is very complex, and we are all so different from each other. Autism describes a highly diverse neurology and autistic individuals are more different from each other in neurology and even genetics, and therefore how our autistic characteristics, gifts and challenges outwardly present than non-autistic individuals differ from each other. That's right: Neurotypical people are more similar to each other than Neurodiverse people are similar to each other.
And since humans like things to fit into neat boxes, and for things to be black and white, autism as a huge spectrum is extremely confusing and easily misunderstood. Speaking autistic people have our challenges ignored or judged harshly as being lazy, or crazy, or rude, or weird etc while non-speaking autistic people or people who speak exclusively in scripts are constantly underestimated, invantalized even sometimes, and assumed to be incapable of even basic understanding which is patently false.
Furthermore although things are slowly changing, autistic adults are largely ignored, and autism is mostly discussed as a childhood condition, or if not as a condition that never changes, as if development halts with a diagnosis. Neither is true.
I'm very different from how I was as a child in many ways. This is a truth that all autistic adults say over and over again. In addition autism in females has largely been ignored and mostly unstudied. Instead as it becomes begrudgingly admitted that girls can be autistic too, we continue to slip through the cracks because the diagnostic criteria is based solely on boys, on studies on boys. There are some new studies beginning, and a few clinicians such as Tony Atwood have published case studies based on their own practices that show a rare attempt at classifying and understanding what autism looks like in girls and women, they are still largely in the minority and have yet to filter down to most clinicians.
Then there's the issue of late diagnosis. For those of us who grew up during the earlier days of the evolution of the autism diagnosis and it's ever changing terms and classifications and diagnostic criteria, especially if we are girls, either grew up with no diagnosis, or with a very wrong diagnosis, and now are faced with a population of so-called "autism experts" who only know how to diagnose autism in young children for the most part, making it very challenging to receive a diagnosis as an adult, furthermore after developing coping skills throughout are life, including maladaptive ones, and since we are adults and not young children, we are often dismissed by psychologists and other clinicians because we don't fit the childhood diagnostic criteria and there is no adult diagnostic criteria at all. Often being able to joke and make eye contact as an adult is enough for a clinician to dismiss a patient as not being autistic when in fact they are.
Another challenge for autistic adults that I've noticed from being involved in online support groups for autistic adults for the past few years, is that we like many non-autistic adults, grew up in highly dysfunctional families, and/or were subjected to bullying and other abuse by peers and adults. We have our autistic differences, but many of us have the added challenges of PTSD and other mental illnesses from childhood trauma and abuse. It's a fact that autistic individuals are like other minority groups, more vulnerable and more often the victims of abuse, more often the scapegoats in group dynamics, including in family groups. We struggle as adults with issues of rejection, abandonment and judgement from ourselves due to learned self hatred, but also from our families. We are different. We are other. We don't fit. We are ourselves even with masks we wear to work and school, in a world that doesn't value authenticity or differences, but deception and denial instead. Charm and arrogance often called "confidence" is valued. Admitting that anything is wrong is discouraged, even vilified. So those of us who stand up for change, who self advocate are often further ostracized.
But it spite of the challenges, I don't regret being autistic. I'm proud of who I am. Autism is only a part of my identity. I'm also human. I'm a therapist and teacher. I'm a dancer. I'm a writer. I'm an artist. I'm a performer. I'm an (ham/hack) actor. I'm a woman. I'm a Christian. I'm Annette. I'm a survivor. I'm a helper. I'm mostly kind. I'm who I am. And that's enough. Accept me as me for me or go to Hell is my mantra. Love me or leave me, unconditionally.
My request of everyone is to stop making assumptions about autism and autistic people. We are all different. Ask us. If you want to really, truly know what autism feels like, the true autism experts are autistic people. We are all individuals. We are human like you. Like you, we all deserve acceptance, respect and dignity, equality. We are all worthy of Love. The cliche of "if you've met an autistic person, you've met one autistic person," is true. Happy Autism Day.