Yesterday, Lisa Belkin, a freelance NYT writer gave her column space to a very angry and defeated sounding autism Mom, Lisa Kupferberg Carter.
Ms. Carter is not furious with the dismal state of autism research, the foot dragging at the NIH to invest in treatment research, the scarcity of schools or the lack of insurance re-imbursement for basic therapies.
No, Ms. Carter aims a decade of anger at Jenny McCarthy. Jenny McCarthy?
Bizarre, I know. Did Jenny give her son autism? Did Jenny stop Ms. Carter from obtaining a diagnosis, therapy or an education? Did Jenny tell Ms. Carter to give up all hope? No. Then why this crazy rage at another autism Mom who as blameless as the rest of us?
What Jenny IS guilty of is listening to thousands of parents across the country and taking their concerns seriously. Jenny is guilty of shining a light on the ever growing population of chronically ill ASD kids, whom the medical establishment has ignored. Jenny is also guilty of writing a book about different Moms’ struggles to help heal their seriously ill children. Jenny also wrote a book with a doctor who is an ASD parent himself. And you know what Ms. Carter, that book helped me and thousands of other parents a great deal. I recommend that you actually read it.
I would never presume to tell other parents what to do or what not to do for their ASD child. Jenny McCarthy doesn’t either. No one can “make” an adult “feel guilty” for not trying this intervention or that intervention. We are all grown-ups here and responsible for ourselves. Projecting blame onto another parent who has no control over your child or the cause of anyone’s autism is ridiculous.
Why this irrational anger at Jenny McCarthy for helping sick kids? How on earth do other Moms talking about their kids’ interventions negatively affect Ms. Carter? I think I speak for many Moms when I say I was absolutely thrilled when Jenny came on the scene. Until Jenny, sick, regressive kids were almost NEVER discussed, researched or taken seriously by the medical community. Those facts, and Ms. Carter likes facts, did negatively affect my son.
I think we can all agree there are many different forms of autism, such as: classic from birth, healthy kid with autism, healthy regressive kid with autism and regressive and chronically ill kid with autism. Unfortunately it is the last category that has experienced exponential growth over the past 10 years. And wow, have our kids been ignored.
Ms. Carter believes only early intervention offers hope for our kids. She refers to EI as the “gold standard.” Well guess what Ms. Carter, we spent our life savings on that “gold standard” and my son got worse! That’s right. ABA doesn’t work if one is in chronic pain. Because so many underinformed doctors obstinately cling to the belief that autism is a “brain disorder” not, in some cases, a total body disease, my son suffered with unbearably painful but treatable colitis for a year. He couldn’t learn or make any progress because he was having diarrhea 10x a day and nothing mainstream doctors advised was helping. In fact their advice, to keep wheat in his diet, made Christian worse!
Parents line up of for hours, fill thousand seat rooms to meet Jenny and hear her speak because she is a voice for kids like mine. Why does that bother you so much Ms. Carter? If you want to buy Fred Volkmar’s book and say it is great, who cares? If you did ABA, Floortime or RDI and it helped your child but not mine, should I blame you for that? Of course not. Different interventions work for different kids.
Ms. Carter cites a terrible experience with a DAN! Doctor. I certainly sympathize with her. There are some bad doctors out there. I too have heard my share of useless and sometimes harmful advice. An ABA supervisor once told me to stop showing my child so much affection and “make him earn it.” Christian had a spinal tap to “rule out a rare genetic disease.”
Needless to say almost none of our kids have that “rare genetic disease” that too many doctors spent our time and money searching for.
Guess what did really help my son, the specific carbohydrate diet! Ms. Carter labels IVIG as unproven and possibly dangerous science. You know what Ms. Carter IVIG helped my son tremendously! He went from being chronically ill, catching every possible cold and infection to being in the healthiest shape of his life.
My son is nowhere near recovered but I refuse to back down and settle for “reasonable hope.” If that is Ms. Carter’s choice, great. But please stop projecting your frustration and anger by judging other Moms who do have hope and want more biomedical research to help our sick kids.