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.
Subscribe to:
Post Comments (Atom)
Posts
33 comments:
I don't want to say too much, or to be too publicly revealing (I actually looked for an email address first)--but thanks for this. It resonates.
Part of the problem, I think, is that the majority of mommy blogs are *so* opinionated that it makes the rest of us afraid to get involved. Mommy blogs do not really represent real life, of course, but they still leave the effect, I think. When you (even subconsciously) feel that the standard is perfection, why would you try? It seems that every mother of a special needs child (this seems especially prevalent with autistic children for some reason) has the One Right Way to raise their child and if you even suggest something different you are Evil.
Do you know what I mean? I don't mean to suggest that you are one of the blogs that perpetuates this feeling, because I don't think you are. But it seems that the standards of taking care of special needs children are so high now that I would be afraid to offer to take care of someone's child, because what if I accidentally cut their casein-free special food on the same counter as the regular bread? What if they saw a screen out of the corner of their eye?
I'm not sure that I'm making any sense, and I really really hope that I don't offend anyone, because I'm not trying to. I'm trying to offer an outsider's perspective.
It's actually very sad that there is so much division among parents of children with autism -- which you are right about, Sophie Miriam, there absolutely is. You would think that these parents would support each other. But they don't. And part of it is that people with high-functioning children (like, I admit, my own) tend to place themselves along a hierarchy. When some shit has hit the fan in your life, like having an autistic child, you want to feel better about yourself and as if, extrapolating from the Calvinist-materialist-determinist philosophy our culture is based in, it's not really your fault, so you might look at your high-functioning child in relation to lower-functioning ones, and think he's doing better because of some fantastic parenting move on your part. Which is just folly.
And then, the parents of HF children have the quote-unquote luxury of supporting neurodiversity, when the parents of LF children are simply overwhelmed and truly need not only neighborly help, but also real kindness and compassion.
I do not believe there's a cure for autism. I don't do GFCF because it would be too disruptive to my family. I believe my son has a great deal to contribute and I try to ameliorate the difficulties in his path to contributing it. One of the difficulties is that people shun him and us because they're, I don't know, afraid of getting some on them.
It's a very lonely path, and if you know such a mother, Sophie Miriam, you could just ask if they need help. If they have special things they do, they'll tell you.
I guess I'm unusual then. My parish has been so kind to my family and my severely autistic son. Our priest loves him, the other mothers I talk to are patient, and the children are at worst a little scared by his oddness but mostly benign to genuinely warm. He is very odd, humming and rocking through Mass, unable to converse, bumping into people, etc.
My parish is a small FSSP Latin Mass community, and has a larger than average amount of (visibly) disabled children and adults, from children with spina bifida, Down syndrome and my autistic son to adults with severe cerebral palsy and spinal deformities. Maybe that has something to do with it. Some families have children who are atypical but undiagnosed, because the parish overwhelmingly homeschools. The families also tend to run quite large, with our not-quite-eight kids being not out of the ordinary.
Maybe if we were at another parish we would find a different attitude.
Neither of my girls are on the spectrum, but I teach a couple of kids who are-and I see what you are saying. As a teacher NOT trained in handling special needs kids (the kids I teach are homeschooled) I do notice a certain fear of "not getting it right" among the families. I basically treat them the same, respecting the wishes for a different snack and a good deal more patience during class time. That being said, I really LIKE my spectrum students, even when they are a little difficult. I like them a lot. They contribute more good stuff to discussion than any of the other kids. I admit to sometimes feeling like not quite knowing what to do, since some parents can be a little difficult-I sometimes feel like I might get it wrong, if that makes sense. But I don't understand why autism, any more than any other disability (and even there I am hesitant to type "disability" but I don't know what else to type) should be shunned. That is grossly unfair and unkind. I guess I've read to many articles about it without having, until recently, a lot of exposure to the actual people involved. I'm rambling at this point, but, for what it's worth, I hope I would never contribute to such a culture.
You are fortunate, Phoebe. It does sound like you have a countercultural parish in its approach to disability.
I think in many cases it is harder to be less obviously autistic. It's like the uncanny valley of autism: the closer behavior gets to typical - but is still "off" - the more folks are skittish to hostile. My son is so very clearly autistic it's obvious within 30 seconds. He gets more slack than the "weird kid syndrome".
That's a good point, Phoebe. Since my ASD son can sometimes "pass" for typical for stretches of time, when his disability becomes apparent, people tend to regroup and react around bad-parenting memes. I can't tell you how many times people have shaken their heads, chuckled knowingly, and said, "If that were my son . . . " in public. I always go right up to them and tell them he has autism. It's not the kind of thing I think should be secret; that's advocacy. Usually people apologize once they know. But when I mention his autism to strangers in casual conversation when he *hasn't* had a meltdown or displayed egregious disrespect, people often express surprise or disbelief. I don't know if they think that's reassuring to me, or if they think the head of pediatric neurology at one of the leading autism-research teaching hospitals in the country must have been wrong when she called him "textbook for high-functioning autism" -- i.e., if it feeds into the same distrust of doctors that fuels the anti-vaccine people. But I just find it frustrating, and likely to make me feel even more isolated..
And then there's this:
https://ollibean.com/2014/02/13/chalk-word/
+JMJ+
A paralegal I used to know once told me something interesting about jury selection for trials in which women sue their doctors for malpractice after the latter misdiagnose the former's breast cancer. According to the paralegal, if you are representing the woman, the worst people to have on the jury are other women who are demographically similar to her. Because no matter how much evidence you have for the doctor's negligence, those jurors will still believe that the woman should have done more for herself. They will blame her for not figuring out on her own that she had breast cancer.
The paralegal's analysis was that these jurors identify with such a plaintiff so much that they are terrified that what happened to her could happen to them. But instead of supporting her in her suffering, they scramble to argue that her suffering was preventable. That is, preventable by her. By rationalising that her suffering is a function of her choices and actions, they get to believe that the same things will never happen to them--because, of course, they would never make those choices or do those things.
A friend of mine told me that he saw a similar dynamic among women neighbours after one woman's husband blindsided her with an affair. The other women preferred to blame the wronged wife for driving her husband away rather than contemplate that some things--such as a husband's character and choices--are simply beyond a wife's control.
It seems to me that this is the sort of shunning which you are facing, inasmuch as a lot of people believe that autism is, to some extent, controllable.
I think you're right, E., and that's a very cogently-put assessment.
The conservative-religious people (I don't refer to Catholics specifically, more to the kind of Americanist conservative-religious ethos across sects) think: "Was it this man's fault or his parents'?"
The liberal woo-type people think: you vaccinated your child; you didn't have a water-birth; you drank a soda while pregnant, etc.
Both of these modes of magical thinking tread perilously close to the now-debunked theory popularized by Bruna Bettelheim -- that autism is caused by "refrigerator mothers" who subconsciously wish their children dead (Bettelheim treated autiism with psychoanalysis, which would be funny if it weren't so crazy).
And both modes release the Good Parent -- either good because of faith and virtue, or good because of natural family living -- of the responsibility of true hospitality toward the suffering.
It's not too different from pervasive American attitudes towards poverty, i.e., people are poor because they're lazy, stupid, selfish, addicted, and intrinsically bad, so why should I help them?
If you are suffering because you have autistic children, ergo, why should I help you?
Pentimento: This post is very illuminating. You have composed an excellent argument exposing the deadly nature of sentimentalism. I mean it; that stuff can be lethal. It's toxic waste dressed up in polite Church Lady frills.
Enbrethiliel: Wow. That is depressing, and yet so believable. BTW, I have metastatic breast cancer. One of the first things my oncologist said to me when I got this diagnosis, before I'd even expressed any sense of self-blame, was: "It's not your fault. I see women blaming themselves for their cancer all the time, and it is Not Your Fault." He scheduled me to see the oncology clinic's psychologist without even asking me if I wanted to; he's that convinced that this is an issue that needs addressing. I'm glad he did.
Thank you for weighing in, Anonymous.
I am praying for you.
And I must ask: are you someone known to me IRL? I just want to make sure that if you are, I am reaching out to you in the right ways. And if not . . . I am praying for you and sending you real love.
Thank you so much, Pentimento. I really appreciate your prayers and concern.
No, we don't know each other IRL.
Here's another thought that Enbrethiliel's story gave me: What if that terrible phenomenon of women blaming other women for BC is a twisted result of popular BC awareness campaigns? Not the fault of the campaigns themselves (though I have plenty of criticisms of the pinkification of BC, but that's another story), but one way that sinful people respond to information. Sort of a dark side of BC awareness, almost inevitable, perhaps, given human nature and the raw fear driving those women jurors. I'm thinking it may work like this: We consider ourselves all so very "aware" of BC now, so, well, if you have it, you somehow failed to have the correct level of knowledge, failed to perform the preventative rituals correctly, and you have angered the gods. So to speak.
The insidiousness of this thinking is hinted at in the facile and self-contradictory slogan, "Early detection is the best prevention." No; if you have a tumor to detect, the disease exists; it has not been prevented. Sure, early detection can help prevent (or postpone) death, but
better methods are needed for actually preventing the disease. But I digress.
I agree with you, Anonymous, and, as you point out, it's the same with the visceral repulsion many good Catholic mothers of typical kids appear to feel for children with ASD. I don't know if you're American, but the sneaking suspicion that we can control our own destiny is the dirty little secret of even orthodox American Catholics.
I love your blog, Pentimento, I just want to remind you and anyone reading this (who has a disabled child) that you have as a patron our Lady of sorrows. At the presentation of our Lord, Simeon told her that her son would never be like other children, that he would be rejected and humiliated and that it would wound her to her core. When the other mothers don't understand, she will be running to your side just like she did for her cousin, Elizabeth. Because I share this name, when I pray the joyful mysteries I announce the second mystery as "Mary visits Elizabeth" to remind myself that she comes to me too, and I offer it in thanksgiving.
Yes, I'm American. I agree about that belief that we can control our own destiny, and I don't even think it's much of a "sneaking suspicion" or "dirty little secret" at all. It's more like a proudly held principle, no less so among Christians than others. (I'm not Catholic, but Orthodox, so I think we're on pretty much the same page here.) It's so essentially American (tragically, in my opinion): that mix of individualism, fear, and contempt towards what we fear based on pride that tells us we're magically immune to what we fear if we despise it enough to exorcise it from our midst, to make it go away from us, magically.
Funny how the same people who exhibit their belief that they can control their own destiny through these behaviors are also quick to complain that Others have thwarted them when they don't achieve what they want.
Thank you SO MUCH for this comment, Elizabeth.
You've suggested this devotion before, and I actually started saying the rosary of Our Lady of Sorrows (sporadically) a few months ago after hearing Immaculée Illigibiza speak. Immaculée spoke at length about this devotion, and she had a rosary of OLS wrapped around her hands as she gave her talk. (She is an absolutely charming person, the kind of person you'd want to be your best friend, and in her presence you really feel that God is using her for great good.)
And thank you for the reminder to call on Our Lady. I love the thought of her running to my side, which has never occurred to me before.
P, I've mentioned to you before my good friend whose adult daughter is profoundly developmentally disabled -- that is, I guess you'd say, "profound." She is mobile, and somewhat verbal, but at 26, she's a forever 2-year-old, and very, very obviously a "special" person, as they say.
So, people respond to her overtly positively -- almost guiltily positively; certainly sentimentally positively; maybe even self-congratulatorily positively -- because her disability is so apparent. She can wander up to a stranger's birthday party and come away with cake, a balloon, and a goodie bag. People in the grocery store slip her money. That kind of thing.
My friend says she's given up trying to stop it, though she also adds, "They don't realize they're creating a monster. I'm the one who has to live with the person everyone gives things to all the time." Sentimentality does no one any real favors, least of all the object of the sentimentality.
And I don't know about isolation in their case -- my friend and her husband both come from large families, and this daughter is one of many siblings, so there's been some buffer between them and that really crushing loneliness. They're kind of their own self-sustaining tribe, though life was probably much harder when even the oldest kids were little, and there wasn't anyone else at home able to keep up with this particular daughter. Still, it's hard for them even now. I'm keenly aware, for one thing, of the fact that I'm not lying awake worrying what's going to happen to any of my children should they outlive me.
It's a grace that I'm able not to feel really frivolous and trivial beside my friend, who's also had a baby die in the time that I've known her . . . it occurs to me now that maybe people do shrink inside themselves because they feel that in the presence of someone dealing with a level of difficulty, or a kind of difficulty, not their own, they have no right to find anything hard in their own lives, or that anything they say or do is going to come across as ridiculously privileged or silly, because they don't bear that burden of concern. That in itself is a silly kind of self-consciousness, even pride, but I think it's one that many people, including myself, innately feel sometimes.
My friend would also recommend Our Lady of Sorrows to you. And yes, I've heard Immaculee speak -- and she once responded to me on Twitter, when I'd happened to mention to someone how inspirational I found her. She just radiates greatness of spirit. And I too love that image of Mary running to our side when we call on her.
+JMJ+
Anonymous -- I'm so sorry about what you're going through, but heartened to hear that you have such a compassionate and understanding oncologist.
I think your analysis of the role of awareness campaigns is right. This seems to be rooted in the fairly modern idea that "education" can save the world. What an utopian--and ultimately unrealistic--ideal!
You're also on to something with that religious imagery. For now that you mention it, these regular self-checks do have the air of a religious ritual. Perhaps not in and of themselves, but I have heard at least one woman attribute superstitious power to it. One must appease those gods, after all! I guess this makes women who do have breast cancer the human sacrifices whom we can afford to lose.
Thanks for the link.
My 7 year old grandson has been diagnosed as being somewhere on the autism spectrum (such a confusing term). He also is high functioning--probably about the same level as Jude from things that you have said about him. I'm sorry you haven't found any support. I'll pray for you to find someone.
AMDG
Thank you, Janet. It's not Jude, actually; it's my older son. I hope your grandson and his parents have the supports they need. Is it a new diagnosis? You can email me if you want to continue the conversation out of the combox.
Enbrethiliel:
Thanks for your kind words.
You bet those monthly self-checks have the power of religious ritual, in a strange and rather pagan-ish way. Especially after you've been through a round of treatment for BC and are hoping it never comes back. I got kind of messed up with an irrational aversion to doing the checks because the thought of finding something was so anxiety-producing. I was close to contacting a therapist to work it out, when I found out that the BC came back all right, but not in the breast, so the self-checks wouldn't have found it anyway. Anxiety is almost always a wasted emotion, isn't it? Oh well.
I fear I may be committing a little thread-jacking here, so I apologize for that. To bring it somewhat back to Pentimento's topic, and to answer her question, yes, I'm American. I agree about that belief that we can control our destiny, and I don't even think it's a "sneaking suspicion" or a "dirty little secret," but is more openly embraced than that, even among Christians. (I'm not Catholic, but Orthodox, and I think you and I are pretty much on the same page about this.) We have the mix of American individualism, the hubris inherent in that, and our deep fears about what we can't control. So our prideful individualism reacts to the fears with contempt for those who suffer what we fear, and we seem to think that we'll magically repel those outcomes in our own life if we sufficiently despise them and can find reasons to blame other people's choices for their own suffering.
But I guess I'm beginning to repeat what you've already said here. I'm sorry for the isolation you've experienced, Pentimento, and will pray for your family. You've also given me some insight that I hope will help me to better understand and love families I know that include children on the autism spectrum.
Sorry to be back so soon after apologizing for threadjacking! But I come with an offering this time, very relevant to the topic. For you, Pentimento, and any other parents of children with autism, I heartily recommend this book of poems:
There Will Be Cats
by Aileen Murphy
https://finishinglinepress.com/product_info.php?products_id=850
(used copies also widely available at online booksellers)
Aileen Murphy teaches poetry and creative writing at Virginia Tech University.
Here is a lovely review of the book and intro to the poet (with whom, like the reviewer, I am acquainted):
http://www.denverpost.com/ci_12267058
+JMJ+
Now it's my turn to beg Pentimento's forgiveness for hijacking her thread, but now that you've pointed out the "pagan-ish" aspect of self-checks and other modern rituals, I wanted to pass on a quotation which a friend of mine recently shared with me. We were talking about global warming--specifically the idea that we can and should control something like the climate of a planet--and he pulled this line from a book he has been reading:
"The great pagan sadness of modern man is largely due to his premonition of ultimate disaster." -- Erik von Kuehnelt-Leddihn
No need to apologize, I'm happy for the hijacking. Thank you for the book recommendation. It's on my Amazon wishlist now.
My family was regarded as "strange" and subsequently avoided. I grew up thinking there was some sort of an aura of weirdness around me that everyone else could see but I could not. I coped by withdrawing.
I know you will not let that happen with your son. I'll ask my Aunt and her community to pray for you both. I will pray too!
Thank you, Maureen. I'm grateful for your prayers.
i just saw this feature in today's Sunday Times --
Reaching My Autistic Son Through Disney http://nyti.ms/1qfA9RN
That's a wonderful article, one of the best things I've read in a long time. Thanks for sharing it, Maureen.
Hi, I'm a 21 year old female and I am borderline for aspergers syndrome. I agree with previous posters, the closer you are to normal the more surprised it makes people when I miss the mark, they generally think I'm being rude or worse if they see my errors and don't know or don't believe me when I say because "you're so normal!"
I've had to make a deliberate effort to learn social skills and still haven't "got it" people with autism want friendship but have no idea how to get it or maintain it.
Thank you for commenting, Anonymous. Your perspective is very much appreciated.
My son joined a small boys' choir this spring, and their concert was tonight. One of the choirboys -- one of two who have been friendly to him -- told me that the other boys had said "really mean" things about my son. My heart sank, but it's no surprise. That social shunning even extended to me -- none of the other moms spoke to me all spring, including tonight (I should add that my son, who's the youngest choir member, is as good a singer and musician as all the others).
Ack. You can come to my house. I can't say I can relate becauseI can't. I have 4 relatively typical kids although one of my twins is a bit "odd" but not off the charts odd and who has celiac like me. My husband worries she could be autistic although I've told him time and time again that she isn't. I think that's the problem of not really understanding it and not wanting to "get it on you" as you say. That you then worry about your own kids when they do anything out of the ordinary. I was a home care respite nurse and a pediatric case manager so I've seen some kids with PROFOUND disabilities who made me cry. And other kids with severe ASD who were downright sweet but dangerous as well as high functioning ASD kids who, it seems, like your son, would sometimes "surprise" you. It was an education I didn't get in school and it was my privilege to help. But I still could never understand what it's like to be in the shoes of a parent with a "diagnosed" child. I only have a glimpse into what it's like. I'm saddened that they don't embrace you or even, it seems, make an effort at your church. Isn't that supposed to be a hospital for the hurting?
Post a Comment