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.


Jean said...

I have not read that book and now know I WILL not. I love your review. My little guy is not a curse! He is a handful, but not demoincally possessed. You are right that Autism is a gift. A gift my husband and I are trying to learn about, figure out, help develop, and adapt to. Thank you for giving our special little ones and us parents a voice.

Robin Hartman said...

Thank you for writing this article. I originally wondered if demonically possessed might be a metaphor for the difficulty and frustration of some of the behavior. Based on your quotes, this does not appear to be the case. Like you, I find it difficult to understand why people think that it is possible to cure autism. Whatever works with that child is merely a coping tool. Just because my son sleeps with a weighted blanket and stopped tossing himself into the wall, I don't believe that means the blanket cured him of aspergers.

I liked that your were sympathetic where the author was coming from. There is a form of guilt in dealing with children with special needs. When I first discovered my son had problems, I started thinking about what I could have done that could have harmed him, during my pregnancy or in his early development. I believe all parents will go through this but to go so far as to call it a curse does damn the child.

Deanna Dahlsad said...

Thanks fellow mommies :)

I'm no saint; I have often wanted things better, even "cured," so that things would be easier for her & I -- safer too. Selfish, but true. I've learned better in 20 years of raising my daughter (and still have lots more to learn too!) But at no time did I view this as a curse or demonic, and I certainly would not publish a book that judges others in such a way.

I am very sympathetic towards what we parents go through. I think that's why I am most horrified at the idea of families, desperate under the strain of a new diagnosis or exhausted by having to live with & raise a child with autism while at the same time having to advocate for that child's rights (all at financial, emotional, spiritual and relationship costs) finding this book and falling prey to such a belief system.

That is why I had to express my outrage, despite the promoter's insistence that I remove it; it wouldn't be fair for me to know this is being said & remain silent about it.

Maverick8901 said...

I LOVE your comments. Sadly, my experience with horrific book is that my Dad sent it to me today with lots of stuff highlighted...especially the horrifying page 111. ARRGHHH! We were wondering why he was calling relatives to perform a DELIVERANCE for our son. This book made me honestly want to PUKE! Our son is a BLESSING...NOT a CURSE...nor is he demonically possessed or in need of a deliverance. We have learned so much from our son. Has it all been easy lessons...well heck NO! Even God didn't promise life would be a bed of roses! But you must look for the silver lining in all things...and not excuses that autism is a curse or that a demon possesses your child. In fact, just knowing that the book is out there and people will read it makes me so very sad! I truly pray it doesn't end of causing harm to some of our special kids if people are going out looking for a DELIVERANCE and don't get one. It is a very SCARY thought.

Thanks so much for letting me know I'm not the only one who thinks this book is HORRIBLE for the autism community. Your words have much more tact than I could have ever attempted to try to write.

Now to shed this anger that such a book exists. We don't need the negativity!

walking said...

Our 20 yo daughter Pamela has never seemed oppressed nor tormented even in her worst moments. I am glad that God healed Mrs. Mayer-Cunningham's child, especially if she believed that he was demon possessed (imagine thinking that of your child!). I know Pamela has blessed our lives and, even though we continue to seek out new ideas in remediating her autism, she is a light in our lives. People in church often comment on her beautiful smile and how you cannot help but smile when she smiles or does one of her autistic giggles. It is infectious! In fact, last Sunday, she shook the pastor's hand and kissed him on the top of his hand. The look on his face was priceless.

We parents are ignorant when we fail to seek information and reach out to one another. We become despaired when we are not able to lean on each other and support each other during difficult times. Those of us who are believers have the extra comfort of spending time with our heavenly Father as we pray for guidance and joy in all circumstances.

Our family is not cursed. Our daughter is not demon possessed. Period. End of story.

Deanna Dahlsad said...

Maverick8901, I'm so sorry that someone -- let along family! -- would send you this book!

I've been resisting posting a negative review at Amazon etc because the promoters of the book are angry with me; but I think the damages of purchasing and "gifting" this book are too high to avoid this. (And I encourage all those who have read this book to post their reviews as well.)

Maverick8901 said...

Thanks for your words PopTart. I did also discuss this with the list I'm on...Aut-2-b-home. (I can't remember that last part but I'm sure you can find it if you google.) There are some very wise and calming people on that list. I've been on the list since I think 2002 when J. was only about a year old and we knew something was going on. I would sit there and pump 40 ounces with one hand and type with the other in my delirium. (J. couldn't digest anything at all...even the special formulas. I was gfcf even when he was still drinking my milk. He wouldn't nurse from me so I had to pump...sigh)The reason I tell you this is because on Amazon there is a comment from S. Glaser (She's one of the moderators of the Aut-2-b-home list.) and she is so helpful. There are some comments under her comment that I just LOVE! Someone had written back to her and she came back with such a good response! You've got to read it! She did it without anger...but with back up from the Bible so it was just perfect. If you ever get a chance come visit our list.

I DO firmly believe that the info. you've posted and what we've written on will help others cipher through all the information about autism which is available today. I do believe a warning needs to go with this book. It can cause LOTS of harm to our "special kiddos". I thank you for making sure that this information is available so that people can compare and contrast information and make more informed choices about what they believe.

Maverick8901 said...

YAY! More well thought out comments on to warn people about this book. BRAVO!

Oh, I goofed up the list link I referred to in an earlier post. This link has really helped me navigate the autism journey with J. with a lot less stress and bumps. It's nice to have people along the way let you know what to expect...and things to help family and the individual with autism have a higher quality of life. The people on this list are loving and supportive!
P.S. This list is moderated by some very competant individuals to reduce any inflammatory comments. It is an AWESOME list with a variety of individuals who contribute. It has been a great boon to me! :0)

Maverick8901 said...

Hey PopTart,
If that was you who posted a comment on THANK YOU!
Did you read the comments under S. Glaser? I'd be interested to know what you thought of them.

Thanks again for your blog! It really did help me after my Dad sent me this book and I was so angry.


Deanna Dahlsad said...

Maverick, I did post a mini-review at Amazon (not sure if it's been posted yet?) -- but I will go read the other comments and try to get to the listserve you recommended. Thanks :)

As an FYI, I've posted the exchange I had with the book promoter about this book review.

Anonymous said...

Hi PopTart,
I hope I haven't been too naughty. I responded to someone on Amazon who was debating with you. I did reference MotherhoodMetamorphosis. I hope that's okay?

Thanks again for your review and honesty!

Anonymous said...

oops last comment was from Maverick8901 aka Autism Angel...I've just forgotten how to post on here other than Anoymous...LOL It's late...sigh

Unknown said...

There are many posters here; may I add my comment from a purely Christian perspective? When non-christians read the New Testament, they frequently are offended by much of what they find, which is natural. The book is addressed to disciples of Jesus; they alone are asked to believe. The real issue here with Ms. Cunningham's book is, I believe, the question: does Jesus tell the truth? Peter wrote that "Jesus of Nazareth went about doing good & healing all that were oppressed of the devil." Why does the idea of Satan & demons seem more offensive then disease & mental illness? Jesus healed both instantly, & all were labeled by Peter as "oppression of the devil". ASK YOURSELF: if Jesus stood before you & offered to heal your child, would you allow him--or would you refuse? Would your response change if he said your child had a demon rather than the disorder or illness you had believed was the culprit? When Jesus encountered unbelief, he did not insist; he departed. "And he did not many might works there, because of their unbelief."

Laura said...

Just shows you should never mix religion with any other issues. Religion seems to create a need in people to make value judgments.