Catholics with ASD Children and the Pro-Life Movement [UPDATED]

I had the unusual experience a few months ago of having a former mentor contact me to ask me to write a letter of recommendation for graduate school. M. was a remarkable soprano a few years my senior; as a young singer, I assiduously tried to pattern myself after her. But because of a combination of forces -- one of the most intractable of which was a difficult family situation -- her career was not what it might have been. She eventually became the mother of a large family, got an advanced degree, and began working in another field. The graduate program she was applying to, however, was in music, and, though I hadn't heard her in years and wondered what the appeal of a performance degree could possibly be at this stage in her life, I was happy to write on her behalf, and delivered a sincere assessment of her numerous fine qualities as an artist, colleague, and friend.

We had been out of touch for a few years and, while working on the letter, I gradually learned that since we'd last spoken, two of her children had been institutionalized for Heller's Syndrome -- also known as Child Disintegrative Disorder or CDD -- one at the age of six. Once considered a distinct diagnosis, CDD is now, like Asperger's at the other end of the dial, rolled under the rubric of Autism Spectrum Disorder in the DSM-5, the standard diagnostic manual for psychiatric disorders. If CDD is indeed a cognitive disorder that falls on the autism spectrum, it seems like a particularly brutal and horrible manifestation one: the child develops perfectly normally until the age of three or four, and then loses not only speech, but every other acquired skill as well. At this age, children have some awareness of what is going on, and the affected ones are reported to have episodes of extreme terror -- perhaps because they are losing the ability to speak, to do, to comprehend -- before they shut down completely.

I don't know how one survives such a thing as a parent.

But it's not as if one can stop getting up in the morning.

I started thinking about what it's like, as a practicing Catholic (which M. is as well), to have a child with autism. My own son with autism is only mildly affected, especially relative to M.'s two CDD children, and living with him, in spite of some painful difficulties presented by his behavior, also brings its own kind of fulfillment and rewards. But I haven't experienced any support -- neither understanding smiles or kind words, nor extensions of friendship -- from my faith community. I've found it extremely hard to make friends with mothers of typical children, including those I meet at church, because my ASD son is so obviously different, and his behavior can be so disruptive, that people with the usual sort of children either withdraw, or simply don't extend themselves. (I've also received this response from progressive types, interestingly; it generally comes about after my son has gone along passing for normal for a time, and then suddenly does something egregious.)

While I've never seen mothers of children with autism embraced in pro-life Catholic (or any other) circles, mothers of children with Down Syndrome are very much celebrated in our community. Perhaps this lionization of DS mothers is based on the fact that, since prenatal testing can reveal the condition, and the law permits a choice of responses to it, in many cases the parents of DS children have consciously chosen life for these children, something that many in the wider culture do not do. So, if there were some kind of prenatal test that revealed autism in utero, and if mothers in these circumstances also "chose life" (which I would wager far fewer in the larger culture would do for autistic unborn children than they do even for DS), would these mothers find more support from Catholic mothers of typical children? I don't think so.

Children with Down Syndrome are generalized to be happy and loving, and even to have unique propensities for holiness; they are sentimentalized as "special" gifts from God for "special" parents. Children with autism are not. Children with Down Syndrome are welcomed, even celebrated, by people of faith; who can forget the near-hagiography surrounding Trig, the DS infant son of Sarah Palin, during the presidential campaign of 2008? Children with autism are not; in fact, when they are murdered by their parents, a chorus of voices generally arises to exonerate their killers. Children with Down Syndrome are viewed as sweet-natured, possessed of a unique sort of hidden wisdom, Holy Fools. Children with autism are . . . not. Even a beloved friend of mine, a faithful Catholic whom I respect and admire, told me that she would be happy to babysit for Jude, but not for my older son. (In her defense, she apologized immediately afterward, but I brooded about it for weeks.)

Even the panic over vaccines, and the increasing rates of vaccine refusal on the misguided ground that they cause autism -- and the vaccine-deniers cut through a cross-section of conservative and liberal -- underlines the point: no one wants a child with autism. Even in what we like to think of as the Catholic subculture -- the counterculture! -- the undergirding of our dominant American materialist-Calvinist culture bleeds through, and I suspect that parents of autistic children, and the children themselves, are seen to a certain degree as cursed by God, with an undercurrent of "who sinned, this man or his parents, that he should be born blind?"

If anyone looks at me, they have plenty of reason to confirm such a belief. I'm an egregious sinner. And my husband was in his forties when our autistic son was conceived, and there's a strong correlation between autism and paternal age. So people in our midst may breathe a sigh of relief if they have avoided our mistakes, or may congratulate themselves for their superior wisdom and virtue. They may even refuse vaccines. Perhaps they will thus be able to avoid both the very real difficulties and the very real loneliness of having children with autism. Or perhaps not. Who knows? But the persistent, underlying narrative, both in the larger world and in the subculture of faithful Catholics, is that autistic lives are less valuable, and far less desired, even than other disabled lives, and that if you get too close, some of it might rub off on you.

The Talmud suggests a prayer to be recited upon seeing a person who is disabled; perhaps it can be applied to people with autism as well, although they often do not appear different:

One who sees… an albino, or a giant, or a dwarf, or a person with dropsy, says ‘Blessed is He who made his creations different from one another.’ One who sees a person with missing limbs, or a blind person, or one with a flattened head, or a lame person, or one who suffers from boils or a person with a whitening skin complaint says, ‘Blessed is the true Judge.’ (Talmud Bavli Berachot 58b)

I do not expect to be celebrated by my co-religionists or anyone else for having an autistic child, but I would like not to be shunned. And I think that a real challenge at the heart of the pro-life movement is to formulate a loving response to the lives of those with disabilities, including the disabilities that are not immediately apparent, are not cuddly and inviting, and may not make you feel like a Good Person for embracing. For God is present in even the most disastrous of lives.

I.e., Not the Same Thing as Voting Republican

Ed Mechmann works for the Family Life/Respect Life Office of the Archdiocese of New York, and is a member of my former parish. This is from the blog he writes for the Archdiocese:

Being “pro-life” — as opposed to merely taking “pro-life” positions — has a much broader and deeper meaning [than winning elections].  It involves a recognition of the sacredness of life, its inherent dignity, that views each individual human being as having inestimable value because he or she is made in the image and likeness of God.  It rejects a reductionist or utilitarian view of humanity, where lives are disposable if they are inconvenient, not “useful”, or if they came into being in a way that we disapprove.   It entails a commitment to defending each and every life against abuse, from whatever source.  It calls people to acts of direct service to the poor, the vulnerable, and the frail.  It is an attitude of reverence in the divine presence, seen in every human person [emphasis added].

Read the rest here.

Love is a Teacher, But a Hard One to Obtain

Kyle Cupp has written a moving post about the brief life of his daughter Vivian. When I read it, it seemed to me to illustrate perfectly the quote from The Brothers Karamazov that prefaces this blog.

"Brothers, love is a teacher, but a hard one to obtain . . ."

Gerard Nadal, bioethicist and father of an autistic son, asks:

[Why] so many autistic children?

I believe that in His infinite Love and Mercy God is permitting this . . .  as a means of rescuing us from ourselves. 

. . . . Autistic children are Love’s answer to our designer approach for offspring, especially as there are no clear genetic markers or physical attributes to pick up in pre-natal testing. We are being given one last chance as a civilization to get it right, to learn the meaning of sacrificial love through a condition that strikes at the very heart of social communication, to walk ourselves back from the precipice of the abyss of narcissistic annihilation. We are being given the chance to learn the true meaning of human dignity and marital love, a love that creates new life and is large enough to swallow any imperfection that comes with that new life.

Such capacity results from . . .  having allowed ourselves to be the recipients of God the Father’s healing love. If we haven’t, we must begin there . . . . This may be our last chance.

A Future without Down Syndrome?

Coinciding with Berenike's post about the Little Sisters Disciples of the Lamb, a surprising (and hopeful) article introducing an unlikely new cohort of advocates for children with Down syndrome.  An exceprt:

Rachel Adams, a professor of English and American studies at Columbia University, is one of the special-needs parents whose ranks may dwindle in coming decades. She was studying the history of disability in popular culture for years before she gave birth to her son Henry, now 2. Still, learning her newborn had Down syndrome was “the biggest shock of my life,” she says. “A tremendous shock.”

Adams describes herself as a pro-choice feminist, a woman who wouldn’t want to deny any other woman the choice of whether to carry a pregnancy to term. But she’s also committed to giving expectant parents a more hopeful view of what it’s like to be a mother of a child with Down syndrome. This spring, she and a friend will be giving talks to genetic counselors about how they can more sensitively deliver the news that a fetus has Down syndrome, without steering couples toward termination.

Vivian Marie Cupp

Kyle Cupp of Journeys in Alterity and Vox Nova lost his baby daughter yesterday, fifteen hours after her birth, due to the effects of anencephaly, which had been diagnosed in utero. Throughout their pregnancy, Kyle and his wife Genece were brave and loving witnesses to mercy and life. May God comfort them, and may Saint Vivian Marie pray for us.

"Freedom danced on blood roses . . . "

On the battle-field of Marengo reflections come flying around in such flocks that one can almost believe that they are the same which many travelers have suddenly abandoned there in a hurry, and which now go sweeping about. I love battle-fields; for, terrible as war is, it still sets forth the spiritual greatness of man, who has gone so far as to defy his mightiest hereditary enemy Death. And just so with this battle plain, where Freedom danced on blood roses her wanton bridal measures. For, in those days, France was a bridegroom who had invited all the world to a wedding, and then, as the song says,

"Hurrah! upon the bridal eve,
Instead of pots, they broke
Aristocratic heads."

But, alas! every inch which humanity advances costs streams of blood, and is not that paying rather dear? Is not the life of the individual worth as much as that of the entire race? For every single man is a world which is born and which dies with him; beneath every gravestone lies a world's history. "Be silent," Death would say, "as to those who lie here," but we still live, and will fight on in the holy battle for the freedom of humanity.

-- Heinrich Heine, Journey to Italy (1831)