Bud is "a child with the label of autism."
Bud "is on the spectrum."
Bud "has autism."
Bud "is autistic."
These are some of the ways that I've heard parents and professionals talk about children. I've used many of them myself. In some ways I can use them to trace my thinking about Bud's autism.
When Bud was initially diagnosed, I viewed autism as "other" - an interloper, a roadblock, an obstacle. I saw it as something to take care of and to get rid of as quickly and as efficiently as possible.
Later, I began to see autism as a part of Bud (and not apart from him). I saw it as a small part, but a significant part. I'd read about the importance of using "person first" language - "people who use wheelchairs" instead of "the handicapped;" "people living with AIDS" instead of "AIDS patients" - and so I incorporated "My son has autism" into my vocabulary and used it the same way I'd use "My son has a head cold."
But as I came to understand Bud better, I learned that his autism is not like a head cold. It is not one small part of him. It infuses every part of him and it shapes who he is in this world. It makes some things terribly difficult for him. It makes other things laughably easy. About that time, I read “Why I Dislike Person-First Language,” written by Jim Sinclair, who is autistic. Sinclair makes a persuasive argument against the use of person-first language when referring to autistic people. One of the several cases that he makes struck me deeply:
Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person. Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral. We talk about left-handed people, not "people with left-handedness," and about athletic or musical people, not about "people with athleticism" or "people with musicality." We might call someone a "blue-eyed person" or a "person with blue eyes," and nobody objects to either descriptor. It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person. I know that autism is not a terrible thing, and that it does not make me any less a person.Over the past several months, as I've been experiencing this evolution in my thinking about Bud's autism, I have done a lot of thinking about the concept of "cure." To be honest, I have never been particularly cure-focused either in my philosophy or in my actions. In a post on Autism Vox today, Kristina references a New York Times Op-Ed piece by Cammie McGovern about the fervor with which many parents seek "total recovery" for their autistic children. McGovern writes,
When your child is initially diagnosed, you read the early bibles of hope: "LetAs I read McGovern's essay I remembered that I own Catherine Maurice's Let Me Hear Your Voice, the book she calls one of the "early bibles of hope". I can't remember if I bought it myself or if someone gave it to me. I know that I've had it for a long time. I also know that, despite the fact that I read books about autism and autistic children all the time, I have never read a single page of it. It wasn't a conscious decision, nor one that was philosophically or politically motivated; it just never felt like the right book to read. In fact, as I think about it now, I have only read one book in which a child appeared to "recover" - and I loathed the book. The books that spoke to me - the books that are my bibles of hope in the land of autism - are the ones in which the authors acknowledge their fears and struggles as they delight in their autistic children: Paul Collins's Not Even Wrong; Beth Kephart's A Slant of Sun; Charlotte Moore's George and Sam. These are the parents I want to hang with; these are the children I long to know.
Me Hear Your Voice," "Son-Rise" and other chronicles of total recovery from
autism. Hope comes from a variety of treatments, but the message is the same: If
you commit all your time, your money, your family's life, recovery is possible.
And who wouldn't do almost anything - mortgage a home, abandon a career or move
to be closer to doctors or schools - to enable an autistic child to lead a
Now, as the mother of a 10-year-old, I will say what no
parents who have just discovered their child is autistic want to hear, but
should, at least from one person: I've never met a recovered child outside the
pages of those old books. Not that it doesn't happen; I'm sure it does. But it's
extraordinarily rare and it doesn't happen the way we once were led to believe.
At the same time, even though it's not one of my goals, "cure" is not a fighting word for me. There is much that is not known about autism; I've read a great deal of speculation that in the years to come, the thing we now know as "autism" will be seen as a great number of different, if related, conditions. It's plausible to me that there may be some conditions that are being called "autism" but that are not, in fact, autism as I know it. There may well be neurotypical children out there who are having reactions to foods or toxins that are manifesting in autistic-like characteristics; I simply don't believe that Bud is one of them.
From his earliest moments, I knew that there was something different about Bud - not that there was something wrong with him; just that there was something different about him. As strange as it might sound, I began to have these inklings before Bud was even born. My twin pregnancy was high-risk and I was followed closely by perinatologists. As a result, in the later months of my pregnancy I always knew which baby was which, and where each was located in my belly. Consistently when we went out in public places - the mall, crowded parties, etc. - Bud's brother would get very excited, as though he was happy to be there. In contrast, Bud would try to wedge himself under my ribcage as though he was trying to get as far away as possible. When we had ultrasounds, Bud's brother would dive face-first toward the sensor and seemed to be saying "Look at me!" But Bud turned his back and tried to hide behind his brother, and seemed to be saying "This is all too much for me." I have read that when one identical twin is autistic, the chances of the other being autistic are very high. Despite that, and though I will never know for sure, I believe that just as Bud has autism but not spina bifida, his brother would have had spina bifida but not autism.
So what does all this mean? If I'm not trying to "cure" the autism, what am I trying to do?
The analogy that's been buzzing around my brain in recent months is this: I'm trying to react the same way that I would if I knew that Bud was gay. He may well be gay - he probably won't know for several more years. I have no idea what the future might hold for him and what challenges he might face. Despite that, I need to do the best I can right now to help Bud lay the foundations that will serve him best, whatever his sexual orientation.
It's not really a far-fetched analogy. We are not defined by our sexual orientations; at the same time, our sexual identities are important parts of who we are and they affect every aspect of our lives throughout our lives. Until 1973, homosexuality was listed in the Diagnostic and Statistical Manual of Mental Disorders. Many parents are still devastated when they learn that their children are gay, and they go to extreme lengths to try to "cure" them. Even less reactionary parents are often consumed with fear and anxiety as they contemplate their children's future: Will they ever marry? Will they have children of their own? Will they suffer harassment? Will people mistreat them? Will they experience discrimination? Will they be happy?
So now, before I know what the future will hold for Bud, there are things I need to help Bud learn: about love, about respect, about partnership, about self-esteem. As he gets older, I will need to help him learn the things that teenagers need to know. And then, ultimately, I will need to step aside and let him use the things he's learned. Or not use them. But if I learn that Bud is gay, I will never try to make him "not gay." I will never suggest that he try to "pass" or that he keep his sexual orientation secret. I will not tell him that he should try dating a few girls, just to find out if he actually likes it.
If Bud is gay, it will be because he is emotionally wired that way. And, similarly, I believe that Bud is autistic because he is cognitively wired that way. So I will not focus my energy on trying to make him "not autistic." I won't teach him how to "pass" or keep his differences under wraps. But I will try to help him build the foundations that will serve him best as an autistic person in a largely neurotypical world - foundations of relationship, flexible thinking, broadband communication, mindfulness. And then, ultimately, I will need to step aside and let him use the things he's learned.
Or not use them.
My goal, I suppose, is to help Bud have options, to let him know that his life need not be driven by fear and limitations, nor by the prejudices of small-minded people.
The goals from there? They'll be entirely up to him.