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Life is complicated.

Life is hard

Dr. Coplan reflects on ethics, politics, and government

The State of Indiana has just passed a law banning abortions based upon the race, gender, or possible disability status of the fetus.  If you believe that all abortion is murder, you will have no problem with this bill (except, perhaps, that it does not go far enough). Otherwise, you will probably find this bill offensive, for various reasons.

You might regard fetal gender as reason that could not ethically be raised for termination of pregnancy, but life is not so simple. Many years ago, the parents of a child with severe autism approached me with a request: They wanted more children, but were afraid of having another child with autism. Since boys with autism outnumber girls by a factor of 4 to 1, they wanted to have only girls. This “girls only” strategy would seem to reduce their risk by 75%. (We know now that this logic is not exactly correct. In fact, the recurrence risk depends on the gender of the child already born with ASD, as well as the gender of fetus, in a much more complicate fashion than the simple male:female ratio of children with ASD in the overall population. You can read more here. But 20 years ago we didn’t have that information.) The parents’ request: Would I write a letter to their Ob-Gyn, laying out the rationale for fetal sexing and selective termination of male pregnancies?

Of course, if this request were being made today, it would have run afoul of the Indiana bill for two reasons: First, fetal gender preference, and second, disability (or, in this case, not even disability, but simply risk of disability) have been declared out of bounds as permissible indications for termination of pregnancy – at least in Indiana.

Before we go too much further, let me say that I am well aware of the internal divisions within the autism world between adherents of the “disability model” (autism as a disorder) and the “neurodiversity model” (autism as simply “another way of being”). This is one of those arguments where both sides are right, and they are talking past one another. Whether ASD is just “another way of being” or “a disorder” is a function of the joint impact of the degree of atypicality and the co-existing IQ. Go here and follow the thread. So the parents’ request is like one of those Russian nesting dolls, where each doll encases a smaller one inside. Is it ethical to terminate a pregnancy if the fetus has a disability? What if it’s simply an increased risk of disability? Should ASD be regarded as a disability? etc. The timing of this post – World Autism Day – is coincidental, but the question “Is autism a disability to be avoided” or simply “another way of being” is one worth reflecting upon, especially today.

These parents wanted more children, but they wanted to do what they reasonably could (based upon the knowledge available at the time), to reduce their recurrence risk for ASD. What would you have done, if you had found yourself in my shoes?

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.


One response to “Life is complicated.”

  1. Anne says:

    We had two sons, both on the autism spectrum. One high functioning, one low functioning (nodding to the discomfort and problems of using those descriptors). Even the high functioning son was extremely challenging through elementary school. Our younger son is now 15 and nonverbal and that intersection of cognitive and other disability you spoke of.

    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. We had a daughter. She, too, is autistic and very highly functioning and beautiful in every way.

    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. (The school’s autism specialist says he’s 95% gentle giant…but the other 5% leave me wondering how long we can keep him safely at home.)

    My husband and I are divorcing now, as a result of (in my opinion) his own spectrum difficulties. (And gifts! There is not a single gift that doesn’t come with a dark side, and that is true for the highest and lowest functioning individuals alike. It was my nonverbal son who responded behaviorally, dramatically, to his father’s actions 1600 miles away.)

    All to say, I’m wildly uncomfortable with any human deciding what life is or is not worth living. And I feel like I get a strong vote, philosophically speaking, based on my experiences with many sides of the spectrum.

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