I think my friend's kid is autistic

I wish she'd consult a specialist, but she thinks she knows what's best.

Published December 18, 2008 11:35AM (EST)

Dear Cary,

A few months ago I befriended a woman I'll call Susan. We have a lot in common, including similar educations, 3-year-old sons and "hippie" sensibilities. Over the course of the summer and fall we've spent a great deal of time together and once or twice a week we meet for play dates.

From the beginning it has been obvious that Susan and I have different views on "Western medicine." Although I'm somewhat cynical about Big Pharma, I generally believe that doctors and the medicine they practice can help us live longer, healthier lives. On the other hand, Susan is extremely skeptical of what she sees as "corporate medicine." While she has taken "Sam" to the doctor a few times when he was obviously ill with ear infections, she does not believe in vaccinations or checkups. As a result, it's been more than a year since Sam has seen a pediatrician.

Most of Susan's quirks I simply shrug off as reflections of her own laid-back personality, but as I've come to know Susan and Sam better, I am growing increasingly worried. From the beginning it was apparent to me that Sam is very, very different from most of the 3-year-olds I'm around.

Although he seems exceptionally smart in some areas (for instance, he knows his alphabet forward and backward and can point to the correct letter when his mom makes the sound -- pretty impressive for a 37-month-old), Sam only talks at the level of an 18-month-old. He screams if he is touched by anyone besides his parents (even a pat on the head or a touch by another child), refuses to make eye contact, regularly collapses screaming for no apparent reason, refuses to socialize at all with the other kids in our weekly play group, and favors strange repetitive play by himself. Other moms in our play group have noticed this. Even my grandmother, who met Sam at a birthday party, told me afterward, "Something's not right with that child." Susan has mentioned that a few people have suggested that Sam might be autistic, but she has taken great offense at this. Before I met her she had a job where she worked with special-needs kids, including many autistic kids, and she states clearly that she would "absolutely know if Sam had a problem." She credits his strange behavior as extreme shyness. I'm not so sure, and I'm worried; Sam clearly has a problem and I've read that autism may be much less severe if diagnosed early. I've tried to point out to Susan that checkups can diagnose a lot of hidden problems like lead poisoning. She's admitted halfheartedly that she probably should take him for a checkup "eventually," but so far she hasn't.

I'm not sure what else I can say to her. Her husband is very hands-off with Sam and generally defers to Susan on kid stuff. She plans on home schooling and says Sam is too shy for preschool, so there's no chance of a diagnosis that way. I should also mention that in all other ways Susan is a kind, attentive, conscientious mom who clearly adores her son. I suspect she's just in denial about this.

So here's my question: Do I simply butt out and hope, for Sam's sake, that Susan eventually admits there's a problem? Or do I force the issue, surely piss her off and lose this friendship? Or something else I haven't thought of.




Stymied friend

Dear Stymied,

Yet again, I set foot on the tightrope. Yet again, I work without a net. I'm going to write you a response straight from the heart, without going back and editing. I began doing this because of the effects of Vicodin and Percocet on my ability to think straight. I am not currently on any pain meds, and my ear is healing nicely. I am sitting at the window of my father's bedroom in the Panhandle of Florida, looking at the old oak tree. I'm not completely 100 percent together, as I've been traveling and recovering from this and that, but still, when are we 100 percent? Maybe 25 percent of the time? The rest of the time we muddle on. So that is the perspective I wish to bring to my response to you. The experiment that began out of necessity has become something else, an experiment in quality of attention, you might say, and in the craft of writing.

My brother is back with groceries. I'll have to stop soon. But first, the basics. He's going to make lunch. It will be ready in half an hour. So in half an hour, I can say some things. The first thing to consider is whether you have some kind of duty to this child. I think you do. I think we all have duties where children are concerned. Parents are not perfect. The collective wisdom of family, friends, community and social institutions ideally compensates for the inevitable personal limitations of each individual parent's knowledge and skills.

So, the child being innocent and unable to choose his own medical and social services, not to mention his inability to choose his own parents, those around him do have a duty to intervene where necessary. But with this duty comes danger and possible conflict. Plus when we consider trying to persuade a mother to do what we think is right instead of what she thinks is right, we must always be reminded that in some fundamental way we are powerless over other people. That is, we can persuade, we can inform, we can beg, but we cannot make her decisions for her. Ultimately it is her decision and we must accept our limits in that regard.

The approach I would suggest is this. Since the question has arisen, I think she should take steps to answer the question. I would say to her that if it turned out her child was autistic, and she had delayed treatment on insufficient evidence -- on the natural belief of a mother that her child is OK, and on the natural wish to believe her child is OK -- then she would feel terrible later. She would feel much worse having delayed treatment and thus perhaps having done her child a disservice than she would if she took the steps early to find out conclusively either way. The first step, I would suggest, is just getting a clear medical opinion. That's all. She could decide what to do about it later. At least she would know what the medical opinion was. She could disagree with the medical opinion. At least she would know what it was.

This brings me to the subject of bullshit, the rampant bullshit that passes for knowledge, the arrant bullshit that passes for conversations on airplanes and in bars and restaurants. There is such a difference between knowledge and bullshit. Bullshit is just the stuff that comes out of our mouths. It's the stuff we believe we know. It's stuff like, "Well, the black bears are the dangerous ones." I'm down in Florida and I'm just hearing guys talk. I'm thinking, how the fuck do you know black bears are the dangerous ones? Are you a wildlife behavior specialist? That's what I mean about bullshit. We believe things about ourselves and about our children. That doesn't make them so.

Bullshit is OK if you're not going to actually be messing with the bears. If you're just sitting in a restaurant bullshitting, that's fine. But if the guy is there with the bear, wondering if it's going to attack him, he wants better information. Likewise, we can talk about autism all we want, what we know about it, what we think, whatever. But when it's one kid, one specific kid whose life is going to be affected by what his mother decides to do or not do, she shouldn't be deciding based on bullshit. She ought to get the facts. Then she can decide.

So how do you tell her? Well, I wouldn't come on like you think the kid is autistic. I would come on like the responsible, correct, caring, enlightened thing to do in our society is to do the tests and listen to the experts and then listen also to anyone else who claims to have expertise in the matter, and weigh their credentials and their credibility along with your own intuition and your own feelings about what's right for the kid. I'd say, you know, it can't hurt to get opinions. You don't have to believe them. But you can hear the experts out and decide for yourself.

I would think the kid deserves at least that.

I hope this doesn't ruin your friendship. There are times to be firm with your friends. Your friends need to be pushed sometimes. We all have blind spots. I myself was ignoring this lesion on my ear because I have blind spots. I needed my wife to push me to deal with it. Now I've dealt with it. I owe her. We owe people. We can't do stuff alone. So I hope you can enter into a dialogue with your friend without ruining the friendship. It's about we take care of each other. It's not about shaming people or making them feel small. It's about working together, pooling our strengths, making us stronger through all the collective talents and knowledge and personality that's around us. So please approach your friend. Approach her with love, but be frank about what you believe -- that she really ought to at least listen to what the experts think. Then she can decide for herself.

Well, look at that. I just wrote straight through. I'm not going to go in and polish it up to make me look smarter and more organized and more concise. Maybe later I'll go back to writing the other way. It's not like it's easier this way. You have to really concentrate, and there's no going back.

p.s. Well, OK, so I had lunch, and, in the spirit of full disclosure, I did delete one sentence in which I myself was just bullshitting. But I didn't rearrange anything. And I asked my brother at lunch, "Which bear is the most dangerous to man?" And he looked at me funny. So I said, "You know, I'm just thinking about all the bullshit things we say to each other." And he said, "Oh, yeah, like a white shark won't attack you unless it's nursing."

Right. That kind of thing.



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By Cary Tennis

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