June 11-17 is Neurodiversity Pride Week. Why, you might wonder, is such a pride week important?
This month, I turn 50 years old. With the help of hindsight, I can see that the story of my life is one of neurodiversity. Diagnosed with ADHD in the first grade—a near impossibility for a girl in the early 1980s—then diagnosed with bipolar disorder when I was in college, exactly when people show symptoms. Diagnosed with autism in my early 40s, part of the “lost generation“ of autistic adults.
The story of my life is also one of hiding my neurodiversity. In middle school and high school, I hid because I was embarrassed to be myself. The times when my true self slipped through, I was socially punished. Even then, I knew I wasn’t quite right, never fully a part of the social group that was ostensibly mine, a freak, a weirdo. I tried so hard for social acceptance, but it never came. And that trying came at the cost of loving and accepting myself. None of my so-called friends from high school speak to me anymore. Instead, I’ve gradually reconnected with the other freaks and weirdos.
Later, throughout my education and career as a professor, I hid my neurodiversity because I was afraid of getting kicked out of school or fired from my job. Nobody wants to be stuck in a room with a person with bipolar disorder; we are scary people. Unpredictable. Violent. At minimum, we are erratic and unreliable.
This “hiding” that I am describing has other names: masking, performing neurotypicality, or social camouflaging. Many, if not most, neurodivergent people mask. It is a survival skill.
But masking comes with a steep cost. It is exhausting and leads to burnout, anxiety, depression, and suicide. Autistic people are 60% more likely to die by suicide than the general population. Masking to fit in with the neurotypical world is, in the end, not a survival skill at all. It can kill us.
I am not “differently abled”; my impairments are real. I struggle with insomnia and anxiety. With meltdowns and shutdowns and depression.
But impairments are different than disability. The second is a social problem, not a personal one. I am disabled by a society that makes it difficult and sometimes impossible to be myself. To be autistic or otherwise neurodivergent is to be part of a stigmatized social group, a social outcast.
Although neurodiversity is a natural kind of human diversity, such as height or hair color, unlike those traits, ours are stigmatized, criticized, unwanted, and rejected. Kids are kicked off of sports teams, bullied by fellow classmates, and unsupported in school. Adults are criticized at work for being rude (because we might struggle with small talk), or difficult (because we might need accommodations).
Neurodiversity pride is about survival—for me, as I head into my second half century, and for my children as they make their way through their teenage years. Neurodiversity advocates like me speak out about our neurodivergences because other people cannot. They will lose their jobs. They might be in prison, where too many neurodivergent people end up, or lost to us forever.
Despite my impairments, I have never expected the world to bend for me. I have always bent myself into the shape that the world found acceptable. But that is not the life I want for my children, your children, or anyone coming behind me.
I want to broaden what it means to be acceptably human. And yes, to take this kind of stand requires pride, the arrogant and unwavering belief that I’m doing the right thing. Neurodiversity pride.
Changing the world is a task that is never finished. Instead, it is a process, a journey. My allies, my friends, my loved ones: Join me on this journey.