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Life is Complicated – Part 2

compass 02 The Thinker

Rodin’s “The Thinker”


What qualities are you looking for when you go to a physician for advice?

Last time, I raised the issue of fetal sexing as a possible way to reduce the risk of having a child with ASD. I described a family who asked me to write a letter to the mother’s OB-GYN in support of their plan, and closed with the question “What would you have done, if you had been in my shoes?”

I received several thoughtful replies. It was clear that the writers put a good deal of heart and soul into their responses, which drew deeply on their own experiences – both as parents of children on the spectrum, and as persons who place high value on acting ethically. One particularly articulate mom wrote the following:

“I’m pro-choice, but when we were pregnant with our third child, we declined gender testing and all genetic testing, even though I was then 37 and of advanced maternal age. … I think that when you choose to become a parent, you choose the path no matter what. I have much compassion for women who find themselves pregnant and unable or unwilling to become mothers yet because of a million life circumstances that are theirs and theirs alone. Aborting due to disability has always felt trickier to me. Of all people, I know the strain of living with a nonverbal teenager who is bigger and stronger than me and whose behaviors are only mostly controlled.”

However, this response does not address the question I posed: “What would you do if you were in the doctor’s position?” Rather, it addresses a different topic: “What would I have done if I had been the pregnant woman?” That is a worthy question, but it’s not the question I asked. Rather, I’m asking readers to consider what it is like to be the physician in this situation: To be the person others come to for help and advice and support. To be the person who has to deal with all sorts of people, who have all sorts of views of what constitutes “the right thing to do.” That’s an entirely different question from asking for your individual view of what you, personally, would opt for as the potential parent.

You may say: “I have no idea what burdens a physician faces. I would never want to put myself in your shoes.” That would be a reasonable answer, and in fact it mirrors what I used to say to parents who brought their children to me: “I would never say to you ‘I know just how you feel,’ because only parents in your situation – with an autistic child of their own – can say that.” So perhaps it’s the same thing here: Only a physician can really speak to what another physician might feel. Only someone who helps make life and death decisions for other people, and carries the burden of his/her own fallibility, can really understand what it’s like to be placed in the situation I described. Is that an elitist response? I don’t think so. I think it’s just reality. The only way to really understand someone else is to walk a mile in their shoes. As the parent of a child or children with ASD, you already know that. Just think of all those people staring at you in the supermarket when your child is having a meltdown, wondering why you don’t just “show some discipline.” Occasionally someone with an autistic loved one will give you some moral support; even a knowing nod and a simple “I understand,” can be so reassuring at that moment. Things are better now that autism is more prevalent and widely discussed. But often the general public still doesn’t get it, and people pass judgement on you. Perhaps the same thing is true here. It may be unrealistic of me to ask “What would you do if you were the doctor?” I shouldn’t call the responses I received “Taking the easy way out,” because even answering the question “What would I do as the pregnant woman?” is not easy. But all you have to deal with in that situation is your own moral compass. A physician, on the other hand, has to interact with people from all points on the compass – and treat each of them with compassion as well as competence. This is a role you may find unimaginable.

So let me ask a different question, which you will find more approachable: When you have a difficult medical decision to make, what do you hope to receive from your doctor? Most of you are not physicians, but all of you have been patients (and so have I)! Imagine yourself as the parent or couple who already have a child with ASD, who are contemplating the option of fetal sexing as a way of reducing recurrence risk. Imagine further that you have scheduled an appointment with your child’s pediatrician, or with mom’s OB-GYN, because you want to discuss this issue with the doctor and weigh your own thinking. “But I would never go to my doctor with that question” you may say. Then think of something else: “My loved one has been in a chronic vegetative state for six months. Do I want to put a ‘Do not resuscitate’ order in her chart?” “My loved one is brain dead on life support. Shall I authorize discontinuation of supportive care, and donation of his or her organs?” “My loved one has a brain tumor. Surgery carries a 50% mortality rate and is guaranteed to produce severe neurological impairment, with no guarantee of prolonged survival. Is it better to face slow deterioration or risk all on surgery?”

Now ask yourself: What qualities are you looking for from your doctor when you go to him/her to discuss these questions?

I’ll be interested in your replies. Then we will get back to what’s going on in Indiana.

James Coplan, MD is an Internationally recognized clinician, author, and public speaker in the fields of early child development, early language development and autistic spectrum disorders. Join Dr. Coplan on Facebook and Twitter. Have a question for Dr. Coplan? Ask the doctor.





2 responses to “Life is Complicated – Part 2”

  1. Anne says:

    Oh, I’m famous! Hee!

    I was conscious of skirting around the question at the time, in part because I still wrestle with my own thoughts around my own experiences. Implicit in my response is a gentle, respectful admonishment to both of us– if people like Peter can’t depend on their own mothers or on their psychiatrists to defend, fiercely, their place in this world, then we’ve failed.

    And as I said, I wrestle with that personally. I AM articulate–thank you–and am frustrated that my son’s needs, and limitations in services, have largely necessitated giving up my own career. It stings some days.

    But also–I think this is connected to your question, ultimately–I’ve been reading Henri Nouwen’s Discernment. He describes discernment (or we might say actualization, mostly spiritually) as having extreme perception and intuition. And who is more perceptive and intuitive than my nonverbal, illiterate, extremely challenged teenager?

    Or, Nouwen also writes about the most cognitively disabled persons being so vital to challenging cultural “powers and principalities.” If my son’s only role is to shake up existing power structures, or values and priorities, from our nuclear family level on up, then that seems a pretty powerful mission in life.

    So circling back to your question, it starts with us insisting that these lives have value. Not just the high-functioning individuals, but every single individual, regardless their impairments. (And every weakness is countered by a strength, I fully believe.) I was uncomfortable reading your previous post with its distinctions of what attributes should be preserved or extinguished.

    But beyond that, I think it’s important for doctors to honor the patient’s (or family’s) perspective. I know that our pediatrician has much disdain for Andrew Wakefield, for example, but he genuinely respected my decision to try a delayed vax schedule for our youngest, not because I’m anti-science or anti-vaccines but because my non-verbal son’s regressions were extreme and alarming during toddlerhood and…separate can of worms. The point is, we had an excellent, respectful conversation around the decision, even though I made a slightly different choice than he would have recommended.

  2. Anne says:

    In other words, let me challenge you: why would the abortion conversation look any different when autism is involved than if you were counseling a couple that has other concerns? Should the conversation look different? I’m nervous about finding–or attempting to find–markers for ASD as clearly as Down Syndrome and the near-total elimination of people with DS. That’s tricky ethical territory…but we’re already there. What do doctors counsel around genetic testing? Whether I agree with it or not, the model is in place.

    When my oldest was three, “they” said he was mentally retarded and that we should look for group homes for our preschooler. As a high school sophomore, he takes AP classes, plays in the top jazz band, is a speed demon on the track, and is popular at school. “They” were wrong. And if they were do wrong at 3, and at 6 and beyond, then how can they, if we, pretend to know the outcome of a child still unborn?

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