A friend with a child on the spectrum recently tweeted her dismay in seeing numerous parents at her child's ball game reading Jenny McCarthy books. I understand, because I read Ms. McCarthy's Mother Warriors, and am myself distressed by how misinformed the author and her featured parents are regarding legitimate autism research, treatments, and literature.
Mother Warriors is not a book new autism families should be reading, so please don't recommend it to them. Parents and caregivers who don't know any better -- or whose libraries aren't stocking any other autism books -- are going to be stuck with a pitifully skewed, and largely unhelpful take on autism treatments and possibilities.
The main problem is that Mother Warriors is a compilation of testimonials. Ms. McCarthy really does believe what she's saying, and so do the other parents featured in her book. But if this was a book we could take seriously, someone would have edited the self-contradictory statements and omitted the factual errors that riddle its pages. If this was a legitimate information source for autism families, it would list resources besides the ones the author is promoting.
Trusting Jenny McCarthy with your autistic child's welfare and future is like asking an American who spent a couple of years working in an Israeli Red Sea Resort -- and thinks that's all the experience she needs -- to guide you through Gaza. She might be passionately dedicated, she may have even even weathered an attack or two. But she simply will not have the background or breadth of experience to speak for all of the people involved, or to guide you through areas of severest conflict. If you rely on her, there's a good chance you're going to be very, very sorry.
This is not to compare autism to a war zone, but to reiterate that new autism "recruits" are best served by veterans with extensive experience. This is especially true for families whose children are not as high-functioning as Jenny's son.
Autism families, you want better than Mother Warriors. Your autistic child deserves better. Please spread the word.
Update: My extended review of Mother Warriors elaborates on the statements above.
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Seymour suggested that we blog and RT books that families of autistic children should be reading instead. Here are my top six:
Autism From Autistics' Perspectives:
Autism From a Parent's Perspective:
Autism Approaches and Therapeutic Techniques:
Big kudos to you and your article.
ReplyDeleteTo the list I would add:
ReplyDelete- Emergence, labeled autistic by Temple Grandin
- The Out-of-Sync child and the Out-of-Sync child has fun by Carol Stock Kranowitz and Lucy Jane Miller (both books on sensory integration.
Great post, Squid!
Great blog. I actually wrote Oprah after the show with Jenny McCarthy and told her that she was doing a disservice to families with children on the spectrum and that she needed to do a show with real autism experts.
ReplyDelete10 things your autistic child wants you to know.
ReplyDeleteVery helpful from a librarian's perspective-- thank you! I just checked & my library has all but two of the books you listed here.
ReplyDeleteThanks for the additional suggestions; those are also great books.
ReplyDeleteI will write another, more detailed review later this week. It's not a book without merits; like I wrote, there's a lot of passion, especially in telling parents to keep fighting and never give up. We all need to hear that. But you can get that same inspiration from other books, without all the questionable guidance.
One of the books that was very helpful to me was "The Sensory Sensitive Child" by Drs. Karen Smith and Karen Gouze.
ReplyDeleteBecause our son was first diagnosed with sensory processing disorder, and only later, autism, much of our initial focus was on the sensory piece. This book brought me deep inside his world, conveying information from the child's perspective and I could literally put myself in his shoes for a much better understanding of what the world "felt" like to him.
I also loved Beth Kephart's A Slant of Sun. Her story resonated with me in a way few others have.
Once again, thank you for the resources you provide here!
ReplyDeleteI'd also add
The Unwritten Rules of Social Relationships Hardcover
by Temple Grandin and Sean Barron
Dr. Thompson's Straight Talk On Autism by Travis Thompson (or really anything by Travis-he's a gifted behavioral therapist)
Well,
ReplyDeleteIf they are looking for a great fictional read...then, you can recommend any of Jenny McCarthy's books....
I cannot wait until we do not have to hear about Jenny any more!!! Most of the people Oprah
endorse turn out to be fakes any how...
@Rebecca Thank you, I will check those out.
ReplyDelete@Mom26children, I understand your irritation. However it's important to remember that the people in Jenny's book really do believe their versions of their kids' health and recovery histories, that their children's conditions were vaccine-induced autism. I really do need to write the longer breakdown of the book...
@kristen, thanks to you too! I replied to you in my head.
ReplyDeleteArrogant and negative. Go ahead and attack someone who is doing nothing more than "sharing" her experience of what worked to bring her child into the now.
ReplyDeleteThis comment has been removed by a blog administrator.
ReplyDelete--Nasty comment deleted--
ReplyDeleteFull book review tomorrow, to expand on and illustrate the statements above.
I don't blame Jenny McCarthy. She tried something and it worked for her, and she wants to help others. I blame the media that is making her the premier voice on this issue in North America. It's almost like if I say that dietary interventions didn't work for my child, I'm speaking for the big bad establishment and trying to cover up the truth. But I bet there are a lot more stories like mine out there than there are stories like hers. But I was never in Playboy and I am not married to Jim Carrey.
ReplyDeleteFor crying out loud, how can anyone take Jenny McCarthy seriously as any kind of scientific or medical expert? She got her start as some MTV bimbette back in the 90s.
ReplyDeleteThat being said, however, anything she says about her personal experience with her own child would be legitimate.
Excellent. God, she provoces me so much! We have our own similar debate in DK, where a new book called "Kernesund familie" (can best be translated into "Kernel-sound/healthy Family" - there is a pun there, but its difficult to translate). However, they claim to have cured their child with autism through diet. And it came to the extent where Danish TV searched for families with children with autism to participate in a series of programs, where you could follow the healing process. Thank God the Danish Association for Autism (along with others) put an end to that.
ReplyDeleteKatrine Kjeldsen
I've read all of her books even her pregnancy book before she knew her son was autistic. They are actually pretty good books and its nice to hear her personal experience with motherhood. My child is autistic and although I wouldn't go to the extreme that she did I believe that every mother in that book spoke from their heart and have just as much right to believe in whatever they want. Let autistic parents choose for themselves.
ReplyDelete@Adam, parents of autistic children need information to choose from. Jenny McCarthy's perspective is one of many; the problem is that it is often perceived as the *only* autism perspective, and she does very little to dispel that perception.
ReplyDeleteOf course parents should not look at only one perspective when it comes to autism treatment. Just like I would never listen to Jenny McCarthy's advice, since I don't believe her child was ever autistic to begin with, I too wouldn't listen to your perspective since your message is also just one perspective which is-biomed doesn't work. To me that is as ignorant as McCarthy's stance. It didn't work for your kid but all children are different and what may benefit one may not help another.
ReplyDelete@Anonymous 12:24PM, my perspective on biomed is that it doesn't work for most autistic children -- my child being one of the non-responders -- and that it is irresponsible and ignorant for people like JM to claim otherwise.
ReplyDeleteMy thoughts on the matter are explained in detail at:
http://www.blogher.com/identifying-and-avoiding-autism-cults
Another good book is "Women from Another Planet? Our Lives in the Universe of Autism," edited by Jean Kearns Miller. Personally, I find books by autistic people far more helpful than books by the "experts" (self-styled or otherwise).
ReplyDelete