The Corrosivity of Inspiration

Jenny McCarthy is known for a few things, but when it comes to autism her primary claim to fame is that of an anti-vaccine crusader. If you read the section entitled “Autism activism” on her Wikipedia page, for instance, you’ll notice that her (scientifically unsupported) claims of a link between vaccines and autism make up the bulk of the material. McCarthy’s view on vaccines stirs ‘View’ controversy was a typical article about her recent foray into daytime talk. And whenever there’s a measles outbreak her name is sure to come up.

But vaccines were not the sole focus of her autism commentary. And another aspect of her campaign — the “recovery movement” — is equally pernicious, at least for those of us raising children with ASD.

The message is simple: children can recover from autism, and it is the duty of the parents (the Warrior Mothers, specifically) to do everything they can to reach this goal. As incentive, McCarthy and others in the movement (e.g. Generation Rescue and the Autism Research Institute) provide a seemingly endless stream of stories about kids who, through the tireless efforts of their caretakers, recovered, partially or in whole, from the disorder. The lives of these children improved, we are told, because their parents never gave up on them.

I’ve spoken before of the central dilemma in treating autism: because every case is unique, there really isn’t a control group against which to compare the progress of your own child. Even so, many of these recovery stories assert causation: because development Y happened after treatment X was introduced, X led to Y; conversely, if X hadn’t been tried, Y would have never happened.

Parents are urged to adopt these treatments themselves. If there is a positive development after you do so, that just proves its efficacy; if not … well, then, you just haven’t found the right treatment yet. But keep looking. Never give up.

The stories of miraculous recovery are usually billed as “inspirational”, and described as necessary for the parents of children with autism. As McCarthy put it in TIME Magazine, “Hope is the greatest thing for moms of autism … Hope is what gets us out of bed in the morning. I’m on a mission to tell parents that there is a way.”

But the “inspirational” message of the recovery movement — that your child can recover from autism if you try hard enough — has a sinister inverse: it implies that if your child has not recovered from autism, it’s because you did not try hard enough, that you fell short in your role as a Warrior Mother, that “the way” remains somewhere out there but you were just too benighted to find it.

This is not an uncommon sentiment in the autism community, by the way. Here is Lisa Belkin in The New York Times:

There’s nothing wrong with reasonable hope. Parents need to cling to something. I still fervently believe that early intervention is critical. With therapy, 40 to 50 percent of the children who are diagnosed at age 3 gain enough skills to be mainstreamed by 6, though many continue to need special educational and social supports. … [but] It’s distressing and hurtful to hear McCarthy say her son is cured because she “was willing to do what it took.”

And Alysia Abbott in Psychology Today:

Andrew Solomon, author of Far from the Tree, an examination of how parents deal with exceptional children (including those with disabilities), notes that autism is unique for the type of burden it puts on parents. “Parents don’t expect to get children with Down syndrome to the point where they no longer have it. With autism, there are enough people who’ve been responsive to therapy that parents almost have a moral obligation to try to help their child to function better.”

What Solomon refers to as the “literature of miracles” puts many parents on a treadmill of trying every possible intervention—even if it’s not scientifically proven, even if it bankrupts the family.

And how many times have you heard an “inspirational” anecdote about someone taking their first steps after being told he would never walk again? The anonymous doctor who “gave up” on the patient is cast as the bad guy in these stories, a fool and, worse, a roadblock on the road to recovery. A real hero, we can assume, would have ignored the evidence and given their patient that great gift of hope, assuring him that he will one day walk again if only he tries hard enough. Better that the patient blame himself if that doesn’t come to pass, I guess, than risk becoming the villain in some future inspirational anecdote.

McCarthy and others in the movement seem to define “hope” as an antonym for “acceptance”. Maybe there’s some truth to that — hope mademy own journey to acceptance more serpentine. But acceptance isn’t a surrender, nor does it prevent a parent from doing all he can to help his child, to ensure that he gains as many life skills as possible. Acceptance is the recognition that autism is an integral part of this person you love, not some invading force against which you must march to war.

Believe it or not I sympathize with Jenny McCarthy, as only one who is also the parent of a special needs child can. I think she is profoundly misguided on her anti-vaccine stance, and believe that her Warrior Mothers rhetoric can be as toxic as it is inspirational, but I assume these are things she sincerely believes and feels compelled to share. The anti-vaccine crusade in particular can be very seductive when your child has been diagnosed, as it offers both an explanation (MMRs) and an enemy to rail again (multinational pharmaceutical companies) at a time when you are longing for both. I don’t begrudge anyone buying into it.

But I no longer wish to be “inspired” when it comes to my son, to be told that a recovery is all but inevitable. As Reinhold Niebuhr observed, you need more than just the courage to change the things you can; you also need the serenity to accept the things you cannot, and the the wisdom to know the difference.

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6 comments.

  1. I’ve seen this so much especially on crunchy granola mothering boards that somehow the world is actually black and white and if we just ate the right thing, got rid of the right toxins or sacrificed a little more our children would be healthy, wealthy and wise as well we us. That somehow it is your fault that you have this disease or your child’s disease or is misbehaving or whatever. I’ve seen this far too often with rather tragic results.

    I understand the desire for things to be black and white to have that one thing that you could do or refrain from doing that would make your world just fine. To have that control. It’s just we’d all be a lot better off if we recognized the world is rarely that black and white and we don’t have as much control as we’d like to think we do.

  2. Matthew, I’ve read your posts “cover to cover” and found something funny, wise or just plain interesting in each one. I feel like I know a lot more about what you guys have been doing for the past few years while I’ve been holed up in H-town. I really miss all three of you (sorry, not counting the cats), and I’ll be sad when this series ends. Am I really going to have to get on twitter to keep up?

  3. It sure is a treat to have Defective Yeti in action again.

  4. From what I can tell, Jenny is in denial which is the first phase of grieving (DABDA – denial, anger, bargaining, depression, acceptance). I feel for her because being in a constant state of denial can cause depression. Constantly hoping things will change/get better leaves you exposed to constant disappointment and usually depression. Sounds like you have worked your way through the grieving process and have come to acceptance. You sound like you are living in reality. In doing so you can live in the moment and increase your chances of happiness. In accepting reality, you, your son and family are all better off. Life is a cycle of grieving, but the more you can accept I believe the more at peace you will be. I hope that writing about your journey is cathartic, because I so do enjoy your writing. How you capture the human spirit is remarkable. I wish you were the spokesperson for Autism rather than Jenny – it’s amazing that she has so much power. I think it’s time you die your hair blonde and get a boob job – you already have the humor part down!!!

  5. It reminds me of when my mum got diagnosed with multiple sclerosis and the Baptist Church Pastor told her if she prayed hard enough she would be cured. 30years on she still has MS, does that make her not Christian enough?

    Ridiculous.

    I adore my kids and I embrace who they are, this autism mum will fight those who somehow thing are kids are broken and need to be recovered.

  6. I also thought of the ‘power of prayer’ as a parallel to what you are describing here. Both are something of a trap. Not parent enough, not Christian enough, not persistent enough…this is the other half of claiming a foolproof method.

    I’ve been wanting to comment since I noted the activity on your blog regarding your son. I’m so glad you decided to open up a bit, because it’s giving us a better look at the life of someone dealing with autism. Going off what you write, you sound like a good dad. I also wanted to mention there is a group home near me for adults with disabilities. I know someone who lives there because he is also in a summer camp program at a nearby camp I used to work at. There is one week of camp that includes adults with special needs and these campers interact on a variety of levels. One woman I recall doesn’t say much beyond, “Hi Friend!” to everybody. I’m telling you this because, hey, there are people out there who are barely verbal and need guidance for everyday stuff. They still get to do activities and live life and have outings to the science museum. I can’t tell your brain not to worry about the future, but you can imagine some stable scenarios too, because they are out there.

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