Having an autistic child is not the end of the world--far from it. It is my hope that through this blog, at least a handful of people will get to understand that. My child is amazing, she brings us tremendous joy. We have good days & bad days, but we CHOOSE to focus on the good. Our belief is that by loving our daughter, giving her the most comfortable environment we can, and by most of all accepting her differences, she will continue to blossom--in her OWN way.

5/19/08

Jenny's New Book

I was checking out Amazon.com when I stumbled upon Jenny's new book. It is entitled, "Mother Warriors: A Nation of Parents Healing Autism Against All Odds," and is available for pre-order, with a release date of September 23, 2008. Mother Warriors? Really? That title is hefty, it's sure to raise more than a few eyebrows. I assume Ms. McCarthy got the "Mother Warriors" from Oprah. On her show, she said to Jenny and Holly Robinson Peete (and perhaps to all us "autism moms" or maybe just the ones who are fighting autism?), "You're mother warriors is what you are." I've heard Jenny use the "W" word before, but I'm not sure if it was before or after her appearance on Oprah.

I have no doubt this will be another bestseller. Good for Jenny and TACA. Bad for us. I've written on my concerns of such a book previously. I'm curious to see what the criteria for being "healed" from autism is? Is there a set of tests or surveys? Are the families profiled subjected to testing, if so with what and by who?

Bigger than my doubts on what "recovery" from autism is, is the issue I have with this mentality. The idea that "recovery" is within every autistic child's reach, and that we as parents (or more often, as mothers) are staring down some doom and gloom timeline to "fix" our kids. We have seen parents who feel they have done all they were "supposed" to do, they had tried everything, and still had not gotten "rid" of their child's autism. Children have been murdered by their parents (and other carers) or died during chelation and some of these other so-called treatments. This idea that your child needs to be cured, that it's like they've been "hit by a bus," and that we should try various treatments (keeping in mind that like chemotherapy, these treatments won't help every child) until they are "recovered," can be very dangerous. Nobody, especially the media, wants to tell this side of the the cure autism movement.

Celebrating only the autistic children who are able to supposedly be "healed" or "recovered" only devalues the life of autistic individuals. It distracts society from the dire need for adult services, and blurs the reality that autistic children do really grow up to be autistic adults (yes, Jenny, once again--there ARE autistic adults). It also further burdens parents who do not see the same progress in their child--especially if they bought into the propaganda and tried all those supposed treatments. This growing mindset, and a book such as this, can be very dangerous.

10 comments:

kristina said...

I can hardly wait to review it-----not.

Ed said...

You describe Jenny and her cause very well.

"Celebrating only the autistic children who are able to supposedly be "healed" or "recovered" only devalues the life of autistic individuals." That's a good point.

Does this woman still not know that autistic adults exist?

It would seem to me that a warrior that is fighting their battle by spreading knowlege would first want to know that what they are saying is true. Some of what Jenny says makes me wonder if she cares if it's true.

Anonymous said...

This is a great post.

Jenny needs to be very careful that her claims of a cure don't come back to bite her. What will she do if they prove to be premature? Hide Evan in a closet for the next 25 years?

The heroic image of "mother warriors" makes it even more clear to mothers that if they don't pull their children out of the clutches of autism, they are lazy and uncaring.

Patricia Stacey wrote a very prominent book about how arduous, daily Floortime saved her son. It's full of laments about how she lost sleep, lost her mind and just about all of her friends. However, she recently described her son in O Magazine as "having special needs." Is he not cured anymore? How does she feel about herself? Is she still a martyr?

I also worry about when cures fail after tons of effort and expense. Especially when the party line dictates that you cannot say that a treatment did not work. You can only say it did not work for my child.

A mother in my old neighborhood had tried nearly everything under the sun with her autistic child--GFCF, ABA, VB, Floortime, extreme vitamin doses. I was afraid to ask about chelation, but I bet it was at least attempted.

She told me chirpily that they fully expected her child to be "indistinguishable by 5!" When he failed to improve drastically, she told everyone in the neighborhood that "he is just so special that nothing works for him." It was said so sarcastically that it was painful. His 5th birthday came and went this fall and by all accounts she has nearly washed her hands of him.

I wonder how often this happens. How many parents resent their child for not being the miracle story that may not even exist?

Jay Gordon, MD, FAAP said...

I don't understand the animosity.

I have cared for children with autism for some years and have come to realize that many will be helped by diet, supplements, behavior therapy, language intervention and much more. Of course, the diagnosis is huge and includes children--and adults--with varying degrees of special issues and special needs. And it certainly includes children, teens and adults who seem to show little change in symptoms and behavior no matter how hard their wonderful parents work.

Like you, I have watched improvement, regression into more symptoms and many other paths.

Jenny McCarthy is bringing a lot of attention to all areas of the autism epidemic. Maybe the biggest problem of all has been the lack of support families get from the insurance industry, the medical community and the pharmaceutical industry. As she and others continue to confront the government and others, the media will increase their attention not just to vaccines, recovery and cures, but also to the need to respect people with autism and their families.

I just don't understand the disdain and insulting tone of "Stop. Think. Autism." Please feel free to email me privately if you prefer.

Best,

Jay Gordon, MD, FAAP

Estee Klar-Wolfond said...

Jenny is not a warrior. She is a pawn. I'm sure she has a ghost writer hired by TACA too.

S.L. said...

Kristina: I'll meet ya at Barnes & Noble and we can discuss. ;)

Ed: I especially respect your perspective on this. Great points. Thank you.

Anon: Thanks for your comment. The story of your neighbor illustrates exactly my concerns. Interesting what you wrote about Patricia Stacey. I think every parent who claims their child to be recovered has to be very cautious. Our neurologist told us from very early on that around the ages of 5-7, we might have a better outlook on things, but that also at that time new things like learning disabilities could be discovered. We've also been told that the teen years can also bring on a new set of issues, especially in the area of behavior and psychological disorders as well as increased seizure activity.

While we celebrate the progress our daughter makes, we also are very aware that she may face bigger challenges down the road. We prepare for those as best we can, as we do her entire future and what needs she may have. Some of these parents may be devastated come the later years, when their "recovered" child isn't so recovered, and especially should this child need special services (and either they are not available from the state or the family has gone through all their money early on for "treatments").

Dr. Jay Gordon: I will send you an email, and I thank you for that invitation.

I will say, however, that if you were to read the blogs and websites of many on the "other side," you would see that the words "animosity, disdain, and insulting" describe those sites much more accurately than my blog. And, for the record, Jenny McCarthy is NOT "bringing a lot of attention to all areas of the autism epidemic." She is shining a big, blinding light on the DAN! protocol and the antivax movement. She admitted on national television that she knows of no adult autistics.

I've never heard her once speak about how lacking services are for adult and teen autistics, or how insurance companies often deny services for autism, or how our public school system is often failing the needs of our autistic children, or any other mention with regard to autism other than "recovery." While she is "confronting" the government and screaming on the t.v., attention and money is being diverted and time is being wasted--precious resources that are severely needed for our autistic children--who with each day, become autistic adults.

Estee: I'm speechless. :)

Anonymous said...

Dr. Gordan,

I believe you answered your own question when you wrote,

"And it certainly includes children, teens and adults who seem to show little change in symptoms and behavior no matter how hard their wonderful parents work."

As I am sure you have seen in your practice, some families are looking for ANYTHING to help their child. This includes savings draining treatments that require a hellacious amount of pills (even close friends of mine).

This does not mean that some supplements do not help some children.

When people are looking for answers, especially when it is a very emotional question, they will look for/try nearly anything. If there were more scientific studies done on such protocols, by others than those who espouse them, it would not be that much of an issue.

I honestly do not know you from Kirby, and you may have a heart of gold, but the numbers do not add up to a relationship between any type of vaccine and autism.

A. Most of the arguments are based on intuition, not science

B. All of the numbers (if we can honestly call them that from a statistical point of view) that have been used to show a positive relationship between vaccines and autism are taken piecemeal to fit a story. I would put my statistical knowledge up against a PR person any day. A big portion of marketing and PR is making the number match want you want them to tell. There are rules for sample size, constructing hypotheses, significance, correlation, etc, etc. Very few people reveal this in their non-scientific studies (it is easy to figure out why).

We don't mind that parents try different treatments or supplements to help their children, it is a sign that they care and that they want the best for them, what people of our ilk have disdain for is pushing an agenda that is based on half truths. Even a broken watch is right twice a day.

There are several people who will try Jenny's way, and will not be successful, to which you have already stated, but Jenny's message is different. Jenny's message is that there is a cure; and that there are those who are recovered.

All we want is honest discourse and real numbers. We are tired of conspiracy theorists leading the way. Which means that We need to do a better job at raising money, and focus on areas where both groups can agree and affect positive change for things like lobbying our states for more adult services.

Good luck to you sir,

Sharon said...

Jay Gordon wrote, "I just don't understand the disdain and insulting tone of "Stop. Think. Autism." "

There is no insulting tone used in this excellent blog. There is plenty of disdain for those who go out of their way to earn it. Why should we respect JMcC when she shows so little respect to people like our autistic children and friends? Her intervention is only causing harm. She is spreading her ignorance and irrational fear of vaccination, and will probably further reduce the numbers of parents who allow their children to be vaccinated. She is continuing the trend to fund research in areas that do not serve autistic people.

You use the expression "autism epidemic" which surprises me since you are, according to your post nominal letters, a doctor. What epidemic is this?

Anonymous said...

Sharon,

Jay Gordon is a marginal doctor with truly unconventional views that have resulted in at least one tragedy:

http://www.aidstruth.org/LATIMES-article-9-24-2005.php

http://quackfiles.blogspot.com/2005/10/dangerous-witchdoctoring.html

At the very least, he is profoundly anti-vaccine.

Marla said...

Oh no! I can't believe it. Okay, I can. Ugh. Yeah, I tried to read the first one and got bored and angry. Then, I tried to listen to it on CD while I drove and could not tolerate that either. I imagine I will just skip the next one all together. I learned the hard way about searching for a "healing". Luckily, I came around and we are all doing better now that we accept our daughter for who she is.