It looks like my niece is autistic

Could you offer some words of advice to her mother?

Published March 15, 2006 11:08AM (EST)

Dear Cary,

Well, I'll just jump into it. My sister's 2-year-old daughter has just been diagnosed with both mental and physical disabilities and my sister is going through a pretty rough time of it right now. I think she's had this idea of what her family life was going to be like -- you know, the husband, the dog, the two kids and love all around. But that seems like a distant dream now that she's faced with the possibility of having to care for her daughter for, quite possibly, the rest of her life.

We all sort of assumed that my niece was just taking her time to blossom. The first warning sign was that she hadn't learned to walk when she was a little over a year old. They attributed that to the broken leg she suffered when she was about 8 months old. But suspicion turned to worry turned to actual testing, and the doctors found my niece to be mentally at a 10-month-old level.

Now, my sister's feeling pretty devastated. She's reading all these blogs about parents with autistic kids and what their life is like. And for sure it's rough, but I can't help thinking that she likes to envision all these worst-case scenarios.

Compounding the problem, she's in a place where she doesn't have much family support and she's sort of a self-proclaimed introvert (although I don't believe that at all). Also, she's a stay-at-home mom, and basically bears the brunt of my niece's long, hard and tedious therapy work.

I know she's a big fan of your column and I think your words provide a sense of comfort for her. I was wondering if you could say something to her. I know she'd appreciate it. Thanks.

Brother of a Worried Mother

Dear Brother,

It's very kind of you to write to me on behalf of your sister. I think I understand what you are asking. You are not really asking me to solve her problem. You are asking me to send her a little gift on your behalf. I think I can do that.

But first, if you are the sister in question, please know that you have a very loving and thoughtful brother, and that is a very cool thing. Please also bear with me while I talk to your brother just a little bit more:

Your request makes me pause to consider how I work. Most days I'm like a guy in his workshop. People bring me things and I try to figure them out and repair them, or suggest how they might be repaired. But also I make stuff, little boxes, little songs, in which I try to hide some delight.

The truth is -- and you don't need to know this, but since you have come into my shop and asked for something to be sent to your sister, and I am in a talkative mood now, leaning across the counter with my coffee, I will confess to you: What I am doing here is I am trying to produce art. While it may seem perverse that I would do so in such a venue, this cheap little workshop of mine, or hopeless that such a form as this could support those intentions, or that the results of this endeavor fall so short of being art as to be laughable ... nonetheless, I confess to you, a customer, that is what I am trying to do, in my way. I am trying to produce little pieces of art.

So it is a welcome delight to have such a commission as yours: to simply send uplifting greetings, a few practical hints, and a reminder of my convictions.

But I try to do more, too. I also try to sing the song of how what we are required to do is always a gift. I am singing that song right now, standing under your sister's window in the snow.

It may be a gift we don't like -- and now I am singing to you, sister -- but we feel obligated to act grateful. I don't know if you believe in God or not, or a benevolent force, or anything beyond yourself, but in cultivating this feeling I am talking about it helps to live in the conscious presence of something beyond yourself, something that you are in essence working for, so you can say, "I'm doing this for you, whoever you are. I'm lifting this burden for you."

Because otherwise at times it's: Why lift this burden at all? Why not put it down in the snow and walk away?

I also know that when things like this happen it is good to look around for support -- as though you suddenly felt dizzy and sought a shoulder to lean on, or a fencepost to steady yourself during an earthquake. That's natural and good. What looks like support, however, is not always support; it may be rotten. Pay attention to how you are standing, lest the earth shift again. And don't put all your weight on something until you know it is secure.

It is also good to do the things that are not practical but are important. For instance there may be research you need to do or a friend you need to see. You might think the research is more important, but sometimes choose the friend. You need to understand what is going on not just with your child but with you; you need to live through this thing or nothing will be good. So seek out other people who have gone through the same thing, and hang around them doing nothing much of value, sitting and talking and wasting time.

Don't so much try to live with reality; just try to let reality live with you. It will do what it needs to do, reality will; it doesn't need your help. It doesn't even need your permission. Just make some space for it so it doesn't crowd you out.

Now this is a thought that is perhaps a bit far afield: It might help to get out in the woods a bit -- to get away from the built environment in order to be reminded how vast the woods are. Something has come into your life that you did not expect. It may seem that everything was going swimmingly until this occurred. To place our natural resistance to surprising and unpleasant occurrences in perspective, it is helpful to be reminded how small our little world of competence and predictability is. The woods will often remind you of that.

People who are born different also have much to teach us. I go to the Y and work out and then I sit in the hot tub. There is a young guy there who is not like the rest of us. He asks me if my family is with me. I say no. He asks me if I have kids. I say no. He asks me if I have pets. I say yes. He asks me how many pets. I tell him. He asks me what kind of pets. I tell him. He asks me their names. All these things I tell him: The names of my pets. The ages of my pets. What movies I like. What movies I own. What my favorite movie is. Whether I like Robin Williams.

He makes lists: Here are all the Robin Williams movies that he owns. We make lists together. There is no weighing and jockeying, nothing tiresome, nothing of the ego. It is pure delight in the things that are: DVDs owned and watched, family members and pets.

It is exhausting, though, to talk like this.

Perhaps this is why it is exhausting: It is much easier to talk about reality in general terms than to actually make even a partial list of its many constituent parts. How many string quartets did Dmitri Shostakovich write, and how many of them have been recorded, and how many of them do I own, and how many times have I heard them performed, and in what cities, by what soloists, in what weather, in what seats? How many times did Charlie Christian enter the studio, and how many times was he recorded live? There are many ways to arrange reality. That is what the people who are different teach us. (You know, speaking of Charlie Christian, a musician friend recommends the book "Expecting Adam," by Martha Beck; I haven't read it but you might give it a look.)

I don't know how your 2-year-old daughter will arrange reality to suit her, or what problems she will have in learning to live on this planet, but I suspect it will teach you much even as it requires much from you. I can't think of any more noble calling. Those of us born into the vin ordinaire of human consciousness, whose brains all work in the same rather mundane, predictable but no less arbitrary fashion, as we trot along in the epistemological mainstream and lounge in the warm lobby of consensus: I'm sure we have no idea. All we can do is salute you.

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