Breaking Barriers: How I Found My Voice

Let me tell you a story about a little girl I once knew, about half a century ago. She grew up in a hall of mirrors and echoing canyons, which magnified everything she saw and heard. From the time she was very small, music made her feel things she could not explain to anyone. When she tried, people told her it was impossible, that she had to be making it up. After a while, she stopped trying.

The only times she ever really felt deep happiness were when she was in a room with other people listening to rhythmic music and clapping or playing percussion. When she saw them doing it on television, she longed to jump through the screen and join them, because there she would know what to do. The rhythm and the motions told her. But when the music ended, she always felt lost again.

And that little girl was lost for a long time. But she was always there inside my body, just waiting for me to find her. Now she works in partnership with the adult me, and we make amazing noises together. And sometimes in partnership with others.

You see, that little girl had no one who could tell her what was going on inside her, and as she got older she was told to fight all her natural impulses. Be a different person entirely. Do not be weird and difficult. Do not do those things with your hands. But as someone who got her autism spectrum diagnosis well into middle age, I can tell you this: my autism became a creative asset once I stopped fighting it.

I will repeat that, because I like to repeat things: my autism became a creative asset once I stopped fighting it. Which was easier said than done. I knew of successful autistic people in the sciences, but not many in the arts. I thought if I did not have the mind of a software engineer, I was doomed. So let me tell you another story, this time about the adult me, 7 years after I was diagnosed.

I was working on a young adult novel, and as part of my research, I listened to old broadcasts of Casey Kasem's American Top 40 from the 1970s. As a young teen, I was obsessed with the Billboard charts AT40 was based on. I even read dusty old issues at the library—and of course, I never told anyone because I was picked on enough already. So now, as I was listening to these old songs and trying to remember my younger self, there was a record I had never paid much attention to, by a singer I had never paid much attention to, and now, this person's voice just…got to me. It froze me in my chair.

The singer was Brian Hyland, and the song was a cover of Curtis Mayfield's “Gypsy Woman.” This record became what I like to call a “B3.” The third trait in the B section of the diagnostic criteria for autism is narrow, intense interests not shared by peers.¹ Oh boy, did this qualify! I found out, when I asked around, that almost no one my age or younger seemed to remember it, although it peaked at number 3 on the Billboard charts in December 1970. (Ask me how I know that.) So it was “all mine,” for my music brain to do with as it pleased.

As I happily fixated on the sounds Brian Hyland made here and elsewhere, my music brain soon discovered, almost by accident, that my true singing voice was very much like his; my voice also got raspier as it got softer. And like him, I could sound like a completely different person when I sang in different parts of my range. Then I saw a video of him performing “Gypsy Woman” on TV, and it struck me that he sang it like an introvert—he got so lost in the song that the audience almost did not exist to him. I thought, “Wow, that's all okay?” It was the polar opposite of what I thought I was “supposed” to do as a singer. It was like his music was sent as a direct messenger to my vocal cords.

I was free. Finally free. My “narrow intense interest” was what got me busted out of my cage, so I could see the world.

I started to think, if I can sing like an introvert, then I can also sing “autistic style.” And write songs “autistic style.” And as I performed these new songs on stage, I discovered that if I allowed myself to flap when I needed to, I was less likely to make a mistake. For the first time since I was a little girl, my audiences started wanting to be in the rhythm with me. Now I was having fun with my creativity, and people were having fun with me, the purple sparkly me that was in there the entire time but buried under mountains of dirt that had been shoveled on to my head for decades.

And I wrote a whole new book, about a young autistic girl whose B3 fixation on a singer from the distant past opens up the world for her. It is called The Amy Virus,² and it was a featured e-book on the Multnomah County Library's Overdrive site in 2017. And I recently signed a contract to put it out in paper.

We all deserve this for ourselves: instead of asking people, “Who should I be, how should I act, what's wrong with me?” to say, “You know what? I'm going to act like me and let the world figure it out.” And I wrote a song³ about exactly that, and it goes like this:

Can't see a thing, but I know it's there, I can hear it, feel it, taste it everywhere

That game was rigged, I knew it all along, I might be crazy but that doesn't mean I'm wrong

Back when I was the size of a fire hydrant, I asked could I play, and they said no you can't

But lo, I was stubborn, wouldn't accept a no, so they said if you really want to then let's go

And they gave me a blindfold, taped bricks to my legs, laid out a 10 mile path of Faberge eggs

Then they said now walk backwards, relax and have fun

But we'll have to kill you if you step on one

But my other senses told me even though I couldn't see

No one else got bricks or blindfolds but me

And I can't see a thing, but I know it's there, I can hear it, feel it, taste it everywhere

That game was rigged, I knew it all along, I might be crazy but that doesn't mean I'm wrong

I know my eyes have tricked me so many times, watched myself commit imaginary crimes

Saw love in people's faces when all they felt was hate and I saw hate when they thought I was great

It was like whenever I was dying of thirst, I'd see a cold drink machine and I'd get out my purse

Then I'd put in my money, watch it pull back the coil

And then spit out a bottle of motor oil

(And when I told them they said) With all your senses always cranked up to 13,

How could you know what really came out of that cold drink machine?

And I can't see a thing, but I know it's there, I can hear it, feel it, taste it everywhere

That game was rigged, I knew it all along, I might be crazy but that doesn't mean I'm wrong

Gonna tell it to the hands, tell it to the hands

Spoken: There it goes, flap, flap, flap! Yeah! What do you think, hand, are you ready to do something else? Okay, let's do it.

They say people like me have empty souls and no hearts

And blank little minds, we can't make art

But finally someone believes me, said what they said wasn't true

But you can't do it like them, you gotta do it like you

And that's when I grew

Grew to believe that it was real, that I was real, I wasn't faking

Grew to believe in all the gorgeous things I could be making, grew to believe it

Grew to believe it, grew to believe me, grew to believe me, yeah

And now I know exactly what all of this was for

‘Cause now it doesn't matter anymore, anymore

If I can't see a thing, ‘cause I know it's there, I can hear it, feel it, taste it everywhere

That game was rigged, I knew it all along, I might be crazy but that doesn't mean I'm wrong

That game was rigged, I knew it all along, I might be crazy but that doesn't mean I'm wrong, no no no no no.

When I perform this song live in front of an audience, and get them clapping along with my flapping, it serves as both exorcism and exhortation. Suppressing my true nature for decades came at an incalculable cost to both my physical and mental health. For the first 44 years of my life, before I was diagnosed, I got the message that I should not feel the way I felt, I was being silly, overdramatic, a spoiled princess who wanted everything handed to her. I told myself I should not have headaches, stomachaches, backaches, trouble sleeping, trouble getting people at work to like me, and trouble finding a real career. I ached with every cell in my body to be someone else. I lost half the hair on my head, which I have been told by multiple doctors will never grow back, and was brought to the brink of suicide more than once. Not allowing myself to even want the pleasure of an audience happily responding to my work, because I thought no one would ever want to listen to the “real” me, left me hopeless and despondent, before the miracle I describe above.

Now I am happy not to be someone else. Because I already did not fit in, I felt freer to take creative risks, which pay off in my unique performance style and ability to tackle subjects most songwriters do not bother with. I have a partner who supports me in my creative life (he went to every one of my shows for the first year to make sure there was at least one person there to appreciate me) and who loves and accepts me for who I am. I have friends—and fans!—who adore me, lavender wig and hand-flaps, and sparkly purpleness and all.

A lot of effort is often spent teaching autistic people to act “indistinguishably from their peers,” that their movements and mannerisms are distracting, that their special interests are unhealthy or tedious to others, and that to be loved and accepted they need to act less autistic. Unfortunately, this risks making autistic people feel like they can never be accepted for who they really are. It takes a toll on mental and physical health, and destroys self-esteem. But more than that even, teaching autistic people to suppress their special interests, stims, or other autistic traits risks suppressing their creativity—creativity that could bring beautiful art into the world. Who knows when a person's “B3” will become a gateway to a fulfilling career?

I urge researchers, educators, therapists, clinicians, family members, and disability professionals to reinforce as often as possible that the gift of being autistic is being able to strip away mindless social programming and see and tell the truth—this is the artist's gift, after all. We all need as many people with unique creative vision in the world as possible.

None of us are mistakes. Voices that are lost can be found, and spirits that are crushed can be uncrushed. And it can happen when and how one least expects it, and at any stage of life. Recognize that what makes us autistic can also make us happy.

Author's Contributions

A.J. is the sole author of this work. She wrote, edited, reviewed, and approved this article.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

No funding was received.