Preface (On Adult Diagnosis)
In Sparrows and Penguins author J. Murray explores the life changing transition that comes with an adult autism diagnosis.
Despite pushes for early detection and diagnosis of autism, many of us are not diagnosed in childhood. This is particularly true of women and people of color. By the time we reach adulthood social expectations drive us to become self-sufficient and find our place in society. The lucky can; the unlucky crash and burn – sometimes with disastrous results.
As our understanding of autism changes, our ability to diagnose adults increases. Many of us overlooked as children are now diagnosed in our twenties or thirties and beyond.
Sparrows and Penguins (An Autism Story)
by J. Murray
Imagine that you’re a sparrow, living in a family of sparrows in a town of sparrows in a world of sparrows.
But you’re kind of a shitty sparrow. Kind of the worst sparrow, actually.
You can’t fly. You’ve been to doctors who have prescribed medicine to help with flying. But you still can’t. You try every day, and every day you fail at this thing which all the other sparrows tell you is critical.
For a while, you stop trying. Failing every day just wore you down and you couldn’t do it anymore, so you stopped trying to fly. It was nice in some ways, but you felt guilty because you weren’t raised to give up. It made a rift with your family. Flying is an important activity that sparrow families do together. Isn’t your family important to you? Don’t they deserve for you to at least make the effort?
So since it’s nothing medically wrong with you, you go to a therapist, who diagnoses you with a phobia of flying. You work on overcoming your fear. You’re lucky, your family is very accepting of mental illness (other sparrows are not so lucky, and it hurts your heart to think about that). They appreciate and admire how hard you’re working. They try to include you, so instead of getting together and flying, sometimes they get together and all sit in their nests. That sort of sucks too, but it’s a definite improvement.
You continue to try, and fail, to fly. You try harder. You try as hard as you can. Sometimes you can’t even make yourself flap your wings, it’s just such pointless bullshit and you feel like you’ll never succeed. Sometimes you go up on a chair and jump off and flap real hard and go splat anyway.
Sometimes mean birds make fun of you because you’re a terrible screw-up.
For 26 years, this is what your life is.
One day, almost out of nowhere, as an afterthought, an aside, something barely worth mentioning because it is so obvious, a doctor says, “by the way, you’re a penguin.”
Holy shit. You’re not a failure. You’re a penguin. You’re not lazy or stupid or weak. You don’t have messed up values. You’re a penguin. You have always been a penguin.
There’s nothing wrong with you, you’re a beautiful penguin. You’re a perfect penguin. But it’s just a fact, penguins can’t fly.
Now when you’re with you’re sparrow friends and they’re all sitting in nests, you sit in a bucket of ice. Mostly you bring your own. Some bird restaurants are really accommodating and will bring you a bucket of ice to sit in. Sometimes mean birds give you shit about your bucket, but it doesn’t hurt as much as it did before, because you know you’re a penguin and you’re exactly what a penguin is.
You give yourself permission to stop trying to fly. Not failing all the time improves your mood and overall function. You finally feel confident declining when invited to flying outings. You don’t waste the energy feeling guilty about it.
You love your family of sparrows, but you also find a whole community of penguins to love too. Things you thought were just you, like preferring fish to bird seed, things you thought you were totally alone in and wrong for, are common and accepted. Some are even admired. Your new penguin friends think your flippers and chubby penguin belly are lovely. You bond over how and when you discovered you loved swimming.
Knowing you’re a penguin means knowing where you fit in a world you never felt like you fit into. It means all the things penguins can’t do, it’s not a personal failing when you can’t do them. You’re not supposed to them. You can do other things instead. Sparrows are actually quite poor swimmers. You feel good about the things you excel at.
This is why I think labels are important. This is why I think “we’re all birds, let’s focus on our similarities instead of our differences” is harmful. This is how my autism diagnosis was like breathing after holding my breath for 26 years.