A couple of weeks ago, Jenny McCarthy headlined the Autism One conference in Lombard, Illinois. As the president of Generation Rescue, a co-sponsor of the event, and a highly recognizable public figure, Jenny has a tremendous platform from which she can do so much good for our community.
Jenny has been a vocal advocate of biomedical treatment for children with autism. I have a number of friends who credit her with providing them with the validation that they so desperately sought for their deep-seated suspicions that their child's particular brand of autism was at the very least exacerbated by his or her co-morbid physical maladies. Many said that she was the first person to offer them hope on what felt like a long, dark road for their children.
I think that's wonderful. I am overjoyed when someone so visible uses their resources to raise awareness about our community.
And Jenny has gotten nothing if not more visible recently. She has a much-hyped new television show and an even more-hyped upcoming re-appearance in Playboy. There's been much written about her exploiting her body and her fame in the name of autism. Personally, I have no problem with her doing so. I might not make the same choice, but let's be honest, no one's asked me to lately.
In any case, we all make choices -- not just trivial ones like where and in front of whom we take off our clothing, but about how we live our lives and how we raise our children -- particularly those with autism. And then we make choices about how we will treat others who might make different choices from ours.
I don't have a television show. No one's interviewing me on the radio. I don't have an upcoming spread in a men's magazine. But I am the mother of a child with autism and I write a blog. And as such, every single time that I sit down to write, I think about my words. Why? Because as I wrote last year following a visit to the White House to discuss the needs of the Autism community,
The words we use matter. Each of us, as autistic people or those who love them, serve by default as ambassadors to the outside world. In so doing, each of us shares a responsibility to the other. I believe that in order to uphold that responsibility, we must do what we can to avoid sensationalism, to stay away from hyperbole. We must work to create an understanding that autism comes in myriad forms, so radically different that often one is barely comparable to another. That its manifestations can vary so widely as to make their shared title a ludicrous farce.I believe that no matter where we or our loved ones fall on the spectrum, we must always be cognizant of the fact that autism IS a spectrum. We ALL must think through the ramifications of our words from pole to pole before we speak for the spectrum in between.
Words matter.
I have all of 6,500 followers. I can only imagine how much more diligent I'd be if I had a hundred times that many.
Last week, while trolling around the Internet in search of varied perspectives and strategies, I came upon two comments on a particular website that threw me. After chewing on them for days, I wrote about them. Because that's what I do.
The following is what I wrote.
If there's one thing that we've all learned as autism parents, it's that gross generalizations are almost never appropriate, accurate or helpful to us or our kids. We spend a lot of time and energy reminding the rest of the world that when you've met one person with autism, you've met just that -- ONE person with autism. Although autistic people arguably share similar traits, our precious children are as different from one another as... well, we are from one another.I don't know how many times or in how many ways I can say it -- autism is one word but there IS NO ONE AUTISM.
So to say that autism is categorically, unquestionably, lay down the hammer and refuse to entertain the existence of any other possibility a lifelong condition for every autistic person and that no one's neurology can EVER change has far too many quantum leaps, assumptions and absolutes for my comfort. (Hers too, by the way.)
Nor do I believe that EVERY person with autism has been environmentally injured or that EVERY person with autism can or will "recover" by undoing said assumed damage to their wiring through biomedical treatment.
Both of those assumptions insist upon gross generalization. And I'm not playing that game.
There are so many kinds of autism -- so many underlying conditions that can create autistic characteristics and lead to behavioral diagnoses of Autism Spectrum Disorder. I don't doubt that some are purely genetic. I don't doubt that some are based upon seizure disorders and other neurological conditions. I don't doubt that environmental injury is real.
I don't claim to know what the culprit -- or more likely culprits -- may be. I tend not to think that it's as simple as mercury or an overload of vaccines, but if I told you that I've never wondered about the effect of the thimerosal in [my daughter's] flu shot years ago, I'd be lying.
While I think that vaccine-induced regression is far rarer than some would have us think, I certainly don't have the audacity to doubt the heart-wrenching stories that I've heard some parents tell. I can't. Who am I to call another parent on this road a liar?
[My husband], Luau and I have not pursued biomedical treatment for our daughter. We have scores of reasons. Some are for public consumption; some, out of respect for our daughter's privacy, are not.
The bottom line is that after exhaustive observation, research and testing -- and I do mean exhaustive observation, research and testing -- my husband and I made the judgment call that [biomedical intervention] is not the right path for Brooke.
Nothing in our world is static, so that decision, like all the others we make regularly on her behalf, remains open for debate. As factors change with time, we plug and replug them into the equation. We recalibrate. We reassess. We discuss. We decide again.
We research diet and read voraciously about new interventions. We calculate risk versus possible reward. Constantly. And so far, our answer has remained the same.
Brooke has shown no sign of gastrointestinal distress. She has not appeared to have any kind of sensitivity to particular foods. She has not shown any indication of heavy metals in her system. We could not find any sign that would lead us to believe that biomedical intervention would help her. And, FOR US, it therefore wasn't worth the risk of finding out.
Both Luau and I are medically cautious by nature. We are exceedingly uncomfortable with taking anything ourselves or administering anything to our children that hasn't been scientifically tested to within an inch of its life on a large scale over a long period of time. Perhaps we are overly cautious. So be it. The decisions that we make based on that excess of caution are ours alone.
So that is what WE do. That's what WE have decided. For OUR kid. And none of that has any bearing whatsoever on what anyone else might do. What they might have decided. For themselves or for THEIR kid.
I would never deride anyone else's choices regarding their child's care. Even if I find a particular treatment personally abhorrent, I can only find it so through the lens of my own experience with my own child, therefore rendering my judgement irrelevant at best and fatally flawed at worst.
It is in this vein that I feel I must say -- and have the right to say -- the following.Do not EVER judge me nor any other parent for the choices we make on behalf of our children. You don't know me. You don't know my child. You sure as hell don't know what goes on inside our home no less inside her mind or her body.
Just because you are convinced that something worked for your child, do not presume that it will work the same way for mine. My child's autism may have an entirely different etiology than your child's. My child's physiology may be dramatically different from your child's. By all means, share it with me. I'd love to hear about it. I'll rejoice with you and then I'll make my own decisions about whether or not it might be an appropriate intervention for my kid. Do not EVER call me lazy or tell me that you pity me or my child if I decide not to pursue it.
Don't ever so much as imply no less say outright that I don't have hope or aspirations for my daughter because I have chosen a different path than you have. And for the love of God, don't dare refer to my acceptance of my child or her autism as 'an excuse for inaction'. I cannot tell you how offensive those words are on so very many levels.
Yes, I choose to accept my child AND -- not despite -- her autism. For me -- for us -- that is what feels right. I also do everything in my power to help her to mitigate the challenges that her autism presents. That also feels right. I also happen to choose to use my energy to make the world a better place for ALL of our children. Because that too feels right.
None of that may work for you. And that's OK. It doesn't have to. I would never judge you for it.
If you, on the other hand, have decided to hold me in contempt for the choices that I've made for my daughter, please ...
Keep it to yourself.
Just days later, I read about what Jenny McCarthy had said in her speech at Autism One. And I had an eerie sense of déjà vu. Hadn't I just responded to this?
I watched the video again and again. I did my best to transcribe her words, though some were difficult to decipher. That said, please note that any errors in recording are mine alone. This is what I heard.
This is something I touch about every year on -- and that's the Victim Moms vs the Warrior Moms. And you're both out there, so hopefully you can recognize yourself if you are a Victim Mom after I explain this. Um, when our kid gets diagnosed, obviously I think we all fall into that same thinking of "Oh my god, I'm going to die. Not my kid. What am I going to do?" And there's this part that takes place -- a moment where you have to decide, are you going to take charge? Are you going to give it everything you possibly can to save your kid? And then something surprising happens with a lot of other moms. They -- this is all subconsciously, but they fall into this victim role and they like it. It's almost as if they didn't get attention in their lives and this -- see, I see a lot of moms shaking their heads -- see, I'm sure you've met them too, you guys -- um, they didn't get attention and now this incredible door opens where all of these people come over and say, "Suzy, oh, Suzy, I'm so sorry, is there anything I can do for you?" There's all this attention. And they're looooving it. They're loving having people feel sorry for them. They get extra, you know, home cooked meals from their neighbors. Ya know, oh... So to me, I can't stand that. Like when people do that I'm like shut the f*@k up and get away from me. I don't want your sympathy. I'm over here. On this train. This warrior train.
Don't take my word for it. Please watch the video here.
Jenny, I know that being outrageous is your thing. And God bless you for it. The irreverence and the F bombs and the parties at the Grotto -- all good. Those are your choices. And I won't judge you for any of them. And the path that you've chosen for Evan? I'm thrilled if it's working for him. And I'd never judge you for that either. Because it's not my place.
Any more than it's yours to call me or anyone else whose child doesn't fit your mold or who doesn't subscribe to your particular theories a victim. I am the farthest thing from a victim of anything. And I assure you, so is my child.
Jenny, You are in a position to do so much good for our kids. Please, I'm begging, take the time to think about your words before you toss them into the ether. They matter so much.
Jess can be found at Diary of a Mom where she writes about life with her husband, Luau and their two daughters, Brooke who is nine and has autism along with an incurable sense of humor, and Katie, eleven, who has been diagnosed by her Mama as having a heart the size of Montana. She also runs the Diary of a Mom Facebook page, a warm and welcoming community of people with autism and those who love them.
Follow Jess Wilson on Twitter: www.twitter.com/diaryofamom
"As we continued to talk about alternative treatments for our children, I noticed the room separating into two sides. We were no longer talking as a whole anymore. There was a group of moms who didn't want anything to do with what we were talking about. They slumped into a corner and had a "woe is me" attitude. I decided to eavesdrop on both conversations.
The "woe is me" moms were talking about how they didn't get to shop or go to the beach with their friends anymore, and the "I'll try anything if it will help my kid recover" moms were trading success stories about the latest treatments"
After reading what you wrote, I can understand how some parents might be upset. I cannot speak for Jenny but I do not think it was her intent to insult. I hope that she responds to your writing. She has her fair share of haters, which is fine - if that's how people want to be, that's their choice. But I don't understand it. This Hatfields vs. McCoys debate in our community is stronger than ever. I wish that we could all just get along, but that seems so unrealistic. The only solution must be to agree to disagree, not hate, judge or name-call. Peace & light, BSK
Does it matter if her intent was to insult? It *was* insulting. I don't see how one not think it is insulting when they tell people that they aren't doing alternative medicine because they like the attention they get by having disabled children.
Who hates her? Most of us have never met her. Many of us decry her damaging words and actions, though. That isn't hate.
I think it does. I know that there have been times when I personally said something that I did not mean to be offensive but it was taken that way. When my friend called me out on it; I realized what she meant. Apology given, apology accepted, case closed. We moved on.
Who hates her? Have you scrolled through some of the comments here alone? Not a lot of love going on! The interpretation of *one* snipet of an entire hour is, in my opinion, incorrect. I have read her books, heard her speak at conferences, and formed my opinion about her advocacy. I do not rely on what the mainstream media reports/distorts. (She never said her son was "cured." Oh, getting tired of hearing that one.)
Parents can choose to try biomedical options if they want to try to help their children if they were medically injured and are in pain. I believe that Jenny was calling out moms who throw their hands up and choose to go the "Woe is me" route instead of "How can I make my child *feel* better?" Again, I cannot speak for her but as someone who was sitting right there, it was not a "We rock and they suck" atmosphere. It was one of empowerment.
I find her choice of heroes...the disgraced and delicensed Andrew Wakefield and Mark Geier who have subjected children to the most horrendous, invasive and dangerous medical procedures, to be an abomination. The fact that these individuals are featured speakers at the Autism One conferences, is an embarrassment to the majority of parents whose children have autism, and a joke within the entire science community. Her choice of
words and her labeling of a large segment of parents who do not believe in biomedical interventions as "victims", "do-nothings" and slackers do "have meaning" and those words are vicious, uncalled for and simply...beyond the pall.
I feel intense sorrow for her son Evan, who, as the years pass, will know exactly how his mother lied about his disabilities and used him for financial gain and to revive her moribund *celeb* career. Truly, she is an opportunist who has by her actions, put back our goals of educating people about autism...and divided the autism community.
PLEASE respect each other and all of our different perspectives in the comments here. To be clear, the only thing that I take issue with in Jenny’s comments from Autism One (as you will see when the Huff Po post is up), is that she is discrediting the choices that other moms make. I refuse to do the same by discrediting HER choices for her son. Please, please – let’s not reinforce the division in this community by reacting to stone throwing by picking up rocks of our own. Thank you. xo
This morning I added this:
Guys, PLEASE do not use this as a forum to attack Jenny or biomed or for god’s sake, each other.
Please read the post. Really read it. Its whole point is that none of us has the right to judge another person’s choices. That goes for Jenny. That goes for me. That goes for all of us.
Please. when we start swinging a bat, we stop talking. When we stop talking, our kids are the ones who suffer for it.
I disagree with Karen McCarron's choice. I disagree with Gigi Jordan's choice. People unfamiliar with the autism moms can find their stories easily.
I present these examples not to compare Jenny McCarthy to them, but to point out that there is a limit to the parental choice defense.
On another level, Jenny McCarthy and her orgs promote some clearly bad choices. It is often difficult to separate the emotinal side of "a parent made a bad choice" from the logical "this choice is has no proven efficacy or safety". Does that mean one should remain silent on the logic?
I'm sorry, this is flatly wrong. This idea that no one should be judged for what they believe and say or for the decisions they have made is wrong. Jenny McCarthy has done more harm to the autism community than good. She promotes unscientific theories about the causes of autism as well as treatments that are unproven and unsafe. I judge her to be an uneducated, attention seeking media hound because that is what she is.
There are parents who have denied their children needed vaccinations because they don't understand the science behind the autism/vaccine controversy. Others have actually force fed their children bleach because they heard that it will cure their child's autism. These parents SHOULD be judged for their ignorant choices because their children suffer the consequences.
Ignorant decisions are not equal to informed decisions. Ignorance and misinformed decisions should never be tolerated. Autism is a different way of interacting with the world and is associated with different abilities and sensibilities. It is not a disease.
I do however find the victim argument interesting. On one hand we have the Jenny McCarthy's telling us that to not do it her way is reveling in our child's disability. On the other hand we have the extreme skeptics accusing biomed mothers of Munchhausen by proxy.
Both types of parents exist, but it's very rare. Most of us are doing what we need to do for our families, our unique situations and within our skill sets. Choosing or rejecting any certain treatment is not an indictment to one side or the other.
However, I will reserve harsh words for those who I feel are beyond Munchhausen by proxy and elevate it to Munchhausen by profit. I see the woman who presented about MMS at Autism One in this category. I see another woman, who uses the penname of Rebecca Claire, who co-authored a book, sells consulting services and a line of supplements based on how she recovered a child who was never diagnosed with autism by chelation therapy, of Autism!. I am not sure if my judgement of Jenny McCarthy is harsh enough to put her into this category, although there is some evidence that it may be the case.
No other "autism advocate", it is arguable, has put out so much misinformation.
Jenny McCarthy is every parent who has a developmentally disabled child worst nightmare.
It's about time that bloggers take her on...for her shameless self-promotion and her fabrications about her sons' disability and *cure* and for her disgraceful labeling of parents whose children have autism...and who don't promote themselves... as whining victims.
"at least she is trying". Trying based on bad information doesn't help anyone. Good intentions don't make up for harmful actions.
Accepting your disabled child is not akin to ignoring them. Your statement is ignorant.
Autism is something I can and do accept because it is part of my beautiful and precious son. I am not going to attempt to exorcise it - in fact - him. Accepting my child is autistic *is* a call to action. I have to accept the responsibility his condition brings and I will move Heaven and Earth to get him what he needs to help him learn new skills and live as happy a life as possible.
It is more than ok to be autistic. My son *is* a blessing - the greatest one I have or ever will have.
Most parents of developmentally disabled kids do advocate for their children and for children who are disabled. We are not complacent parents...we are busy caring for our children...and busy implementing therapies that are science-based.
Jenny McCarthy is an opportunist, who *claims* she *cured* her child. She has used her child to revive her all-but-dead celebrity *career*. She promotes her *products* that she hawks on her website and, the has-been-celebrity *tweets* from her son's bedside, when he is hospitalized for control of his seizures.
My son, who died eight years ago, was the joy of my life and he had a profound impact on anyone who ever met him or knew of him, because of my advocacy on his behalf and my advocacy on behalf of developmentally disabled kids and adults.
I never *capitalized* on his rare genetic disorder with autistic-like behaviors. I provided the around-the-clock care that enabled him to survive into adulthood. My advocacy on his behalf and for other children and adults was a labor of love...not calculated to promote myself or the pseudoscience and bogus treatments that McCarthy promotes on her website and at the yearly Autism One conferences.
I miss my son, but he lives on...in my heart...and in the lives of people who received his corneas and his heart valves, donated after he died.
This is why, based on your previous comment, have judged you to be prejudiced against disabled people, autists in particular. This is why I have to call you on it
She has chosen a path to use her child born with special needs to revive her fading fast career, by *claiming* at one time, that her son was *damaged* by vaccines. Realizing now, that vaccines have been totally exonerated by many studies conducted in the United States, Europe and Japan, she has now backed off that *theory*.
What really upsets me, as the parent of a developmentally disabled child and as a registered nurse, is the continuous support of disgraced and de-licensed doctors, such as Andrew Wakefield and Mark Geier, who along with his son, David (who is not a doctor) are chemically castrating autistic children. Why are these charlatans, chosen year after year, to be presenters at McCarthy's yearly Autism One Conference?
New, at this year's Autism One Conference, was the seminar and marketing of MMS, an industrial bleach for oral dosing and for enemas to *treat/cure* autism:
http://www.huffingtonpost.com/todd-drezner/autism-cure_b_1588498.html
There are no medical indications for MMS; the FDA has issued warnings about this industrial chemical, it is banned in Canada and banned by the European Union...yet Jenny and her group have offered a platform to these charlatans. Credulous parents, who have *faith* in Jenny's organization and *faith* in other notorious anti-vaccine organizations, are promoting this form of child abuse. Outrageous.
She doesn't say anything about having to do biomedical treatments. She says, are you going to take charge, give it everything you possibly can?
Some people cope by sticking their heads in the sand. Others cope by reading all they can on the subject, and/or springing into action. I don't think Jenny is wrong here.
SAVE? Seriously?
Help, love, support, advocate for...absolutely, but SAVE?
These beautiful children are not dying from Autism.
Thank you again for sharing your story with your readers on your wonderful blog and for this post as well.