Foreword
When parents come to me terrified, convinced there is no viable future for their precious children, I send them to those who not only wait to welcome our children with open arms, but who so willingly guide us as we make our way along this winding, rocky, beautiful path together.
A couple of years ago, I was asked to speak to a group of early education students at a local college. They were studying specialized teaching methodologies for Autistic students and, after bringing in an Autistic speaker, their professor wanted them to hear from a parent.
After I spoke, I opened the floor to questions. There was one I will never forget.
“How did you feel,” a student asked, “when your daughter was first diagnosed with autism?”
I took a deep breath and answered honestly. “I was terrified,” I said. “I sobbed. I retched over a toilet bowl. Because of everything that I thought that I knew about autism, I could not imagine that there was any real hope of a future for her.”
I took another deep breath before I continued.
“Because, you see, I didn’t know any better. I didn’t yet know that the terrifying and damaging rhetoric out there about autism wasn’t going to be our reality.”
Desperate to find help for my newly diagnosed daughter, I turned to other parents, doctors, researchers, therapists—anyone who cared for or worked with Autistic individuals. While in some cases their experiences were helpful, the truth was that no matter how much or how hard they’d studied, how renowned their work or esteemed their opinions, they could still only offer the perspective I already had—that of a neurotypical person making assumptions about the Autistic experience from the outside in.
Some of the so-called experts sold outrageous myths as truisms, backed by the long-outdated idea that in order to exist, a human trait must be expressed only in a way that is familiar and recognizable to neurotypicals—to wit: intelligence measured only by language-rich tests, the existence of empathy determined only by its method of delivery, theory of mind “proven” by a test so flawed that it’s not even wrong.
It soon became obvious that the current autism zeitgeist was off the mark. So I turned to the experts. The actual ones.
I searched for Autistic people who were able, in one way or another, to share their stories. As it turns out, they weren’t hard to find. In fact, they were—and are—everywhere.
Some of the folks I found were verbal, some were non-speaking. Some used electronic devices to communicate, some were able, after having spent years, as my friend Barb Rentenbach likes to say, “disguised as poor thinkers” to type their thoughts.
I yearned to hear everything they had to say. More than anything, I longed to understand my daughter’s experience not from the outside looking in but from the inside looking out.
It was on Brooke’s fifth birthday that I published a post called “The Gift of Perspective.”1 It was only the second post that I ever wrote on my then-brand-new blog, A Diary of a Mom. In it, I quoted an Autistic woman who had anonymously published an article ahead of April, well known at the time as Autism Awareness Month. She wrote, “Don’t pity me or try to cure or change me. If you could live in my head for just one day, you might weep at how much beauty I perceive in the world with my exquisite senses. I would not trade one small bit of that beauty, as overwhelming and powerful as it can be, for ‘normalcy.’”2
“I always feel so privileged,” I wrote in response, “to get glimpses into the minds and hearts of people who have lived through this. When someone says, ‘I wouldn’t change it for the world,’ well, what an amazing reminder that every bit of this struggle (both real and perceived) is SUBJECT TO PERCEPTION.”
My daughter was five when I wrote those words. She had little to no novel language. Her life was often frustrating and overwhelming and painful and hard. It was a life-changing moment.
Over the years, I have become increasingly grateful to those who give so generously of their time and precious energy to share some of the most intimate details of their lives in the name of a better world for their younger brethren. I don’t know what I would have done without their insight, their guidance, and their friendship. I cannot imagine the parent I would be today without having had their help in stripping away my own assumptions, my own ableism, and my deeply ingrained neurotypical bias in order to understand and respect my child’s inner life.
Their experiences may not be an exact match with hers. Some may not even come close. But always—always—there is invaluable insight to be gained from their writing: a glimpse of what it means to be Autistic in a predominantly neurotypical world.
There is no greater resource for neurotypical parents of Autistic children than the members of their own community. When parents come to me terrified, convinced there is no viable future for their precious children, this is where I send them: to those who not only wait to welcome our children with open arms, but who so willingly guide us as we make our way along this winding, rocky, beautiful path together.
They know, like no one else possibly can, of what they speak.