Monday, June 05, 2006

(R)evolutionary parenting

Bud is "a child with the diagnosis of autism."

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: "Let
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
normal life?

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.
As 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.

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.

21 comments:

SquareGirl said...

Mom-NOS...I would be speechless, but I have one word. Beautiful.

this was a BEAUTIFUL post.

thank you.

I loved it.

Zilari said...

YAY!

I'm about to go to bed, but truly, this post will mean I go to bed with a HUGE grin. =D

Sharon said...

Yes! You have said just what I think. My son was born autistic. I delight in him and my ambition is to help him to be a great autistic adult.

Anonymous said...

I often wonder if people like Catherine Maurice, Christina Adams, the woman from www.hiddenrecovery.com (if she's so proud, why is she "hiding"?, etc. would even still care about their children if they did not "recover." They make it clear that unless their children recovered, their lives would be miserable and meaningless.

MattsMom said...

Thank you, thank you! You described my evolution of thinking over the past 7 years perfectly (Matt is now 9). Even your twin pregnancy story was very similar to mine(Matt was right under my rib cage and quite the fidget - his sister passive under him).

"Slant of Sun" was the only book I read early on. I could never finish the others no matter how often I tried. Great post!

Kaethe said...

You strike a profound chord. Thanks for sharing what you are learning about who Bud is, and how he is, and how to make him happiest in our world. To some extent, I think this is what all parents are of should be striving toward: accepting our children as who they are and working with that.

Sixty years ago my left-handed daughter would have been forced to change, to learn to write with her right hand, to accommodate to the norm, rather than the reality of who she is.

On a scale of prejudice, I know that isn't high. But if we really care about every child, we all have to learn this lesson.

Bonnie Ventura said...

An excellent post! My son also had a distinct personality before birth; he was very active and often became agitated by loud noises nearby, and I couldn't drink anything with caffeine because it would send him into a kicking frenzy.

When he was about four years old, I asked him what he did before he was born. He thought about it for a moment and answered, "I didn't like being all wrapped up, and I did a lot of kicking to try to get out."

There's no doubt his autistic traits were there from birth. Several other people in the family, including me, have very similar traits. I was fortunate in that I grew up in a family with a broad concept of normal human diversity.

MOM-NOS, have you seen Aspies for Freedom's response to the 10 Things essay? It's called 10 things an autistic adult wishes you knew.

Kristina Chew said...

(My mother-in-law was forced to write with her right hand though she is left-handed so many years ago. She can write with both, as a result.)

This deserves to be in the NYTimes as much or more than the McGovern's piece.

Where would we and our thinking be without our children-----without our experiences raising them, or trying our best to?

gretchen said...

So interesting about the twins' different personalities- thank you for sharing that.

Sometimes I compare autism with blindness- if my kid was blind I would help him navigate through the world. I wouldn't waste a lot of time trying to "cure" him.

kyra said...

thank you, my friend! for posting this beautiful essay. i relate to so much of it. parenting my son is first and foremost, parenting--it's guiding, leading, learning, watching, joining, stretching, honoring, respecting, and always loving. we are changing each other, he and i. i have no need to cure him. how could he be cured of who he is? i only have the need to provide the most solid foundation i can for him. my dream for him is to feel great about who he is and feel safe in this world.

joleen said...

Very well-written and beutiful post!

About what to call it (child with autism och autistic child) I think you (and Jim Sinclair) have a really good point in what you say. I try to say "child with autism", for the reasons Ellen Notbohm is writing about, but it is not a simple discussion. Sometimes it feels wrong because of just the things that has been said here, saying it that way makes it look like something that is clearly bad.
But it is still hard to know wich is the best to use, because people prefer diffrent words, and I really do want to use the one that holds most respect for just the person I meet.
Comparing autism with blindness and homosexuality are both very striking analogy, and I guess in a way you can say that having autism (or being autistic) is kind of like being gay and blind at the same time :). Gay as in different and blind because it is that hard to navigate the world if it isn't adapted to your needs.

With love and respect for all you fighting parents out there!

MothersVox said...

Wow, MOM-NOS, a knock-out beauty of a post. Brilliante! Thank you. I have been thinking about the McGovern piece for two days, and still don't have a coherent response. Perhaps, after yours seeps into my bones, I will.

Shawn said...

I'll join the chorus: "Well said!"

The title you chose for your post is so appropriate. My perspectives on both autism and parenting have also evolved considerably in the past four years. I would have never guessed how much I'd come to understand in that time.

Loving Liam said...

Wow that was a great post. Thanks for sharing.

Mum is Thinking said...

I hope there will be many links out there to this post, it's the sort that deserves wider distribution of some sort.

You've put to words what many of us, I suspect, are feeling, and done so beautifully. From the heart, no frills, straight and true.

Well done!

karen said...

I am so happy I have found your blog.

THANK YOU!

Moi ;) said...

Great post, Mom :) That's all, just, Great Post.

Wade Rankin said...

And I too will join in the chorus of thanks for this post. Speaking as someone who is looking for a "cure," I truly appreciate the balance you bring to your writing.

Big Orange said...

As the Once-Ler said, "Wow! Wow! Row-dee-dow!!" That was... Whoo-- that was bloody BRILLIANT writing. If you don't send that off to Newsweek or The New Yorker or somethin' like that, I'll hold my breath until I turn blue!

It's interesting: I've got QUITE a list of "required reading" about autism, and "Let Me..." IS on the list. Interestingly enough, for the very reasons you've said, i've never bothered to read it; it just doesn't seem to jive with my philosophy.

I remember Sol's autism doc going over the results of his testing after his diagnosis with us and he said very clearly three things that stick with me:

1) 75% of marriages end in divorce within 6 years of a diagnosis

2) part of the reason they end is that one partner, usually the mom, feels the need to "save" the child from his/her autism; this also drives the divorce rate

3) your NT daughter will, if need be, grow up to be 100% self sufficient and care for herself if necessary. This means that her entire childhood will be lost if you focus exclusively on saving Sol from his autism and essentially ignore her needs. You MUST NOT do this.

Other parents had heard this speech and felt the doc was being mean and crabbi. I now applaud him for cutting through the crap and telling us exactly what he needs.

in closing, I too am referring to Sol as "my son who has autism", not as "my son the autistic."

Gawd, this is good stuff!!

MyKitchenInHalfCups said...

Incredibly deep thoughts here and extremly well written.
I'm here after reading Neil's(at my table) post today. I read Jim Sinclair also.
Which ever way to say it, it seems to me what's really important is seeing each child as uniquely different and responding to that individuality.
My grad school professor (in a child dev class) one day asked "What is the goal of childhood?" The answer of course was simple and so obvious our class of 6 drew a blank initially. "Adulthood" and sometimes they get there inspite of us.
If you are responding to your child as the individual they are, it might not matter how you say it maybe it's more important what you mean when you say it.
Really a wonderful post.

Tara said...

This is an old post and no one has commented on it in years, but I just found your blog. My daughter (age 5) was just diagnosed with PDD-NOS and SID. I had lots of family ridicule us for even taking her in to be evaluated, (we really only did it so that insurance will pay for the services are seeing she needs) because she "seems normal" to them.

Why do I say all that? I say all that because I have been saying since the day I found out I was pregnant with her that she is "different." She was different in the womb, she was a different kind of infant and she's a different type of child. I have no doubt she will always be "different." She is an absolutely WONDERFUL, RADIANT, JOYFUL sort of different, but different she is and has been since we were blessed with her.

I say all that because in my 6 years of telling people "this one is different and I knew when I was pregnant." I have had no less a number look at me incredulously. I have never heard anyone else say their child was different in the womb and I'm so glad to read this.

So thanks. Thanks for everything.