I read an article a few weeks ago claiming that Jenny McCarthy’s son had never had autism, so perhaps her argument that she had “cured” him of autism through diet and other non-medical means should be dismissed entirely out of hand.
The actual article in Time Magazine is a bit more complicated than that – there’s speculation within in that McCarthy’s son never had autism, and some discussion about how parents of autistic children have always looked for “cures” that vary from dietary changes to cooper bracelets, from vitamin shots to behavioral therapy, and that McCarthy’s thing is basically that she’s famous and has a son with autism and has used her larger platform to get more attention towards her cause. Okay, I can see that.
But I don’t like it.
The reason I don’t like the methods that McCarthy is advocating for are, at the heart, simply this: I think it harms parents of children born with disabilities, and I think it harms people with disabilities.
I want to start with parents of children who are born with disabilities, and then will talk about the harms to children born with disabilities (and the adults they become) in a later post.
The biggest recurring conversation I have with parents whose children were born with disabilities is how often they’re asked, whether explicitly or implicitly, what they did wrong. What they did to make their child disabled. What they are not doing right now to “cure” their child. What is their horrible failing that “made” this thing happen to their child. Often, of course, this is directed at the mother. Did you drink? Did you do drugs? Was there any way you could tell before the baby was born? If you had known, would you have gotten an abortion? Did you know as soon as your baby was born? Did you do something? Were you working past a certain month? Did you eat right? What did you do?
Because, you know, your child’s disability is all your fault. It’s a personal, moral failing on your part, and you need to do something about it.
I see these play out as well in the shaming of certain types of women for deciding to have children. Don’t you know that children born to mothers over a certain age are much more likely to be disabled? Don’t you know that you shouldn’t have a baby if you have a disability because your child might also have a disability? Shouldn’t we sterilize certain types of women so we never end up with more of their horrible, awful, crippled babies?
What does all of that have to do with Jenny McCarthy?
Jenny McCarthy was famous before she started on her discussions about her son’s autism, and became more famous afterwards, getting on Oprah to talk about her son’s “recovery” from autism. She talked about the special diets she put her son on. She’s probably the most famous mother of an autistic child. So, the biggest thing people are likely to know about autism now is that you can “recover” your child from if it you feed your child a special diet.
So why the hell is your child still autistic? Your child can be cured if you just try hard enough.
Quick: On top of all the self-blaming that many parents with disabled children do, have society blame you as well.
Certainly that makes it easier for people to dismiss the needs of families affected by disability. Your child is like that because you did something wrong, you decided to go forward with a pregnancy, you haven’t tried hard enough.
So flounder there.
I think it’s important to separate the experiences of parents who have a child with a disability, and the experiences of children and adults with a disability. There are conflicting needs when it comes to these two groups, and I feel that there’s a strong tendency to figure that if you’re helping parents who are currently non-disabled but whose children have a disability – especially if that child is autistic – then you’re helping the child as well. There is overlap, but not as much as the general public has been led to believe.
Part 2 will talk about Jenny McCarthy’s ideas and how they impact children with disabilities, and part 3 is about whose voices we amplify, and whose are ignored.
8 thoughts on “Jenny McCarthy & Autism Part 1: If we shame parents enough, maybe autism can be cured!”
I agree, although, as an autistic myself, I never looked at it from the parents’ point of view. But now that I read this, I realize how often indeed parents who choose against alternative “treatments”, or who may not even want to “cure” their children, are being shamed by those who try them.
Thank you for the wonderful post. I had only “autistic-like” symptoms, but your words really strike me, with this blaming situation being similar for my parents. It was only when my mom started writing a book on special education and home-schooling, when I read the first chapter, that she was having the same wondering about “what did I do wrong”. Before she researched the topic enough to know that it wasn’t her fault, she felt like the shittiest parent on the planet. This sort of blame-the-parent crap is extremely emotionally damaging and I was almost crying reading that this is how my mother actually felt at the time.
you may address this in the second installment, but i also don’t like that she is willing to jeopardise the health of all children with her dubious anti-vax programme. she knows that this may/probably will kill children if implemented, but she thinks that is a fair sacrifice to make to “end autism” (although of course it won’t actually be HER making that sacrifice.)
People claiming their kids have ‘grown out’ of ASDs, or been ‘cured’ with special diets/exercises/snake oil frustrate me a lot, because often it seems (at least to me) to be based in the assumption that autism is some form of static, which turns off your ability to change or learn as you get older. I mean, I don’t know her, or her child, so I’m hesitant to make specific claims about either of them. Maybe he wasn’t autistic in the first place. Maybe her special diet enacted a cure! I certainly can’t say for certain that neither of those things are true, since I’m not her son’s doctor.
But, you know, maybe he’s one of us who are fortunate enough to be able to learn to pass.
Before my daughter started stuttering, I didn’t understand Jenny McCarthy. I thought she was self-centered and delusional, inspiring people to dangerous things with their children for no good reason. I still think the “Jenny McCarthy” effect is dangerous, and the rise in preventable illnesses due to non-vaxxing is something she is responsible for, in part.
But the mother part of her, I get that. As a mother of a child with a disability, my perspective is not the same as that of my child. My daughter has the struggle, but I have to just watch with my hands tied behind me. And people assume I am not doing enough, ask me to prove that I am doing enough, ask questions that imply I caused the disability.
At the same time, I imagine what lies ahead for my daughter, and the potential hardships she will encounter, the teasing, the difficulties with jobs and school. I am filled with fear for these things, the things other people who stutter say were traumatic for them. I don’t want my daughter to be traumatized. I don’t want her to be ashamed, or afraid of school. If there was something I could do to keep her from the potential trauma and pain, I would do it. I would do anything. ANYTHING.
So you feel helpless. And when you feel helpless, you feel worthless and guilty. It becomes your fault because you can’t figure out how to fix it, and isn’t that what a parent’s job is? To keep your child safe from trauma and suffering?
And of course, other people say it will make your child stronger to go through this. And yes, I know this, but I want to lash out at them, demand they explain why MY daughter somehow needs to be stronger, but not theirs. Why are they so smug that they think my child needs to learn special lessons that theirs don’t need?
And so you look around, and there are people selling snake oil promises. And you know they are snake oil, but part of you thinks, ‘what if I’m wrong this time? What if this actually worked? If I didn’t try it, wouldn’t that be like child abuse? If there was something that could get rid of the issue, and I didn’t do it, what kind of mother would I be?’ And there is no good marker of how hard to try, how far to push, how extreme you should go. So you just don’t know if you are going far enough or too far.
So while intellectually, I believe that things like chelation for autism are way way way too far, as a parent of a child with a disability, emotionally I understand it. Because what if you leave one stone unturned, and that was the stone you needed… what kind of mother could you possibly be?
Great post. I’m looking forward to the future installments. As a currently not disabled person, Jenny McCarthy has mainly bothered me on the level of heaping blame onto parents (especially parents without the resources she has). To be honest I didn’t think very much about the other issues you’ve raised, so your perspective on this is really interesting.
I think there are several types of responses people have to finding out you have a child with a birth defect/special needs/disability. One is the type you’ve mentioned (lots of questions). I’ve been lucky not to have much of the it’s-your-fault stuff. If anything, I wondered if it was my fault from the get-go. But whenever I voiced that concern – doctors, nurses, friends, family, and other people all told me no, no, no, it is not your fault. They don’t even know what causes this birth defect my child has, but they still insisted there wasn’t anything I could have done to stop it. Within the biggest online community of parents of children with this defect, once in a while someone (new) will start musing on whether it could be caused by some medication they took when pregnant or whatever and inevitably they are politely told to stop with the speculation – that it’s harmful to people’s emotional states, it’s fruitless, and let the medical researchers deal with figuring out the whys.
I do wonder what would be the experience of a parent whose child has a disability that is or is perceived as being preventable/avoidable.
Where I experienced some weirdness was from a handful of people who wanted to give me advice on how to “take care of myself” when I was pregnant to “cure” my fetus/unborn child. These people didn’t know anything about the condition that I hadn’t told them and here they were telling me how to cure it (with vitamins, exercise, relaxation). Wow. I just figure their arms must be sore from lugging around that gigantic paintbrush.
I’ve been lucky in being able to choose whom I interact with (for the most part), and am in the perhaps unusual position of having no one in my life who is antagonistic towards me or to whom I feel antagonistic. Some parents I know are not so fortunate – particularly those who are financially vulnerable, and reliant on family members or the government for money/housing/medical expenses. I have heard many painful stories, and it is appalling the verbal and psychological abuse that some parents have to endure at the hands of supposed “loved ones.” Most of it is of the “if you really loved your child, you’d do things my way” variety.
It’s funny how most of the people that say “if you loved your child, you’d do things my way” are suggesting things that either will have no effect, or are downright dangerous. Especially the things that Jenny McCarthy suggests. It’s no less than abuse of disabled people all over again. And yet they believe the abuse is to “let” your children continue to be disabled, even though they must see that their suggested “treatments” aren’t doing anything.
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