Monday, July 06, 2009

Defying Autism? More Like Damning Autism

When asked to participate in the blog tour for Defying Autism by Karen Mayer Cunningham, I responded by saying:
I'd be interested in reviewing a copy of this book, possibly interviewing the author... But I must warn you, I'm rather skeptical about this. As the parent of a (now adult) child on the autism spectrum, I'm really a hard sell on cures -- no matter how miraculous.

Let me know if you/the author are up to the challenge...
Karen Power of Christian Speaker Services, the one organizing the blog book tour, replied favorably:
I totally understand. And, Karen Mayer Cunningham isn't trying to push the cure. It's her story, her journey, and what she learned along the way. I think it's more for the mothers/parents than about the cure.
I have to include this information along with my review for several reasons.

First of all, after 20 years parenting my own child with Asperger's, I've run the gambit, from spiritual to scientific, from dietary to "refrigerator mom" (and even less flattering approaches), only to end up where we are today, with a daughter with serious delays who remains on the spectrum. So I'm more than a little skeptical about "cures for autism."

Secondly, I want to be fair with this book review and provide a disclaimer of my own beliefs as well as documentation of my stance with the folks involved in promoting the book.

A few other reasons will be illuminated along the way.

Defying Autism: A Miraculous Story Of Hope by Karen Mayer Cunningham is an easy to read slim book of 115 pages which, unless you are upset by the material, can easily be read in an hour or two. The first two chapters deal with Karen's return as the prodigal-esque daughter -- and frankly, as I read them, I wondered why they were included in the book. But as we near the end of Biblical proportions, such context adds to the story. For you see, once Karen's son James becomes difficult & is diagnosed as being on the autism spectrum, a large part of Karen's guilt centers around belief that she is, through her son, being punished for being less than perfect.

This is not uncommon among the parents of special needs children; even if you aren't particularly religious. Nor is the reaction/response of Karen's husband, Tom, who accuses Karen of being a bad mother. Guilt is typically the inward path of blame that women take; males tend to externalize their blame. This is a large part of why many marriages between parents of special needs children end in divorce.

If these issues were familiar to me, the problems with school & childcare providers were doubly so.

Like Karen, I'd had to battle schools & utter very real threats of legal actions and media attentions. I'd also had horrible scenes & difficult times with childcare (from baby sitters to childcare centers) because those providing the childcare had no clue what to do. I've faced the same ignorance, accusations & animosity Karen faced -- and then some, because my daughter was actually booted from childcare centers & punished at school, despite her "special ed kid" stamp. So I knew how Karen felt when she & her family were treated so poorly by their church's childcare & the public school.

I sighed & ached as I read of Karen's external battles & internal struggles; it certainly isn't easy parenting special needs children. Especially when the child "looks normal" but then displays otherwise. Like Karen, I've often thought that if my child looked special (had Down's or was in a wheelchair, for example), that more allowances & understanding would be given -- to both the child and the parent. (But I wouldn't, as the author does on page 72, call a classically autistic child "deathly, deathly ill with no hope for a cure.")

Also unlike the author, I've never received any such miracle healing of my child.

It's not that I have not prayed; it's not that others have not prayed for my daughter. It's just that my daughter's situation remains (albeit some advancement due to continuing professional assistance, counseling, medication for sleep/stress, & ongoing education).

Having tried various spiritual treatments (finding them at best supportive to me emotionally -- the power of which should not be underestimated), I am not comfortable suggesting a miracle cure as a way to extend hope to other parents. It's rather dubious, actually. For it is at this point of non-miracle that one must then realize the doorway is open for such questions as:

  • "If playing Christian music, anointing with oil, &/or other rituals of faith combined with prayer were all that was required to receive God's attention, His miracle, then why do so many suffer?"
  • "Am I so sinful that my child must suffer?"
  • "Am I of the right church?"
  • "Do I follow the right God?"

All of this is not only more guilt for mother ("Are my sins are too great?") but dangerous rhetoric ("Whose God is greater?"). We parents did not "give" our children autism; that's self-defeating and does not support our children. All faiths offer forgiveness and each faith can offer up miracle healings of their own; but still, what a dangerous argumentative path in our times of intolerance.

While I certainly do not begrudge James his healing, Karen her miracle, or anyone their belief in faith, I can, as I do with Jenny McCarthy, remain skeptical & express concern over what is offered as hope but comes with so much rejection. And in this case, it comes with judgment too.

On page 111:
Not every autistic child is demonically possessed, but autism is a curse. In that sense, it must be seen as an oppressive and tormenting force that must be faced with more than just the standard social service tools. The enemy of God wants the people of God ignorant and in despair; this is the ultimate curse. But the Father is in the curse-busting business, and so whether He leads us to phenomenally gifted physicians and clinicians, or to alternative therapies, or to those who know how to address spiritual matters in the power of the blood of the Lord Jesus Christ of Nazareth, He wants us to be free. He wants our children to be free.

Calling autism a "curse" is more than just dangerous in terms of guilt & religious intolerance; it's damning of the individual with autism.

There are things equal-to or worse than autism (where is God during such "curses" as domestic violence, rape, murder, war?) and many on the spectrum would not change who they are. In fact, some folks, such as my daughter's therapist, call autism a gift. Others might not go so far as to call it a gift (I personally struggle with that label myself; from time to time asking for the gift receipt so that I might exchange my daughter's Asperger's for the singing talent to win American Idol), but, like Horton says, "A person's a person," no matter where they sit on the autism spectrum.

If Defying Autism is, as Powers says, "more for the mothers/parents than about the cure," then the author goes about it all wrong. If this bit, from page 110, doesn't "promise a cure," it sure implies it:
This is something only God can do. This is bigger than what the medical field could promise or state agencies manage or those with good intentions assist. It is called a miracle.

(There's a reason people in the medical field don't promise a cure; they'd get sued.)

As the mother of one child diagnosed Asperger's (and one being screened for the spectrum), I found the condemnation of a "curse" far overshadowing any ability to commiserate, let alone be hopeful. In fact, I found Karen Mayer Cunningham's book inflammatory & antagonizing.

It's difficult to say that even if the author had skipped the whole curse bit if I'd have felt better about the book... But she didn't and the aftertaste is too bitter, too strong.

But I suppose, if you are feeling isolated in parenting a child on the autism spectrum (and are unwilling to get yourself to one of the plethora of online networks or real-world support groups), Defying Autism might help you feel less alone... Similarly, if you've got a relative who just doesn't "get it", this book might help them understand some of your struggles, fears, guilts etc... But for me, suggesting someone learn more about autism by reading a copy of a book that calls my kid "cursed" would be horrific. (Would you call your child in a wheelchair "cursed" or "demonically possessed?" I don't think so.)

In any case, I'd caution readers against expecting a healing miracle.

And you might be better off tearing out page 111 entirely.
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