Words Matter

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.
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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.

And so I stop to think about what I say before I say it. I weigh and measure and I hem and I haw. Sometimes I screen my posts through friends to make sure I haven't missed a possible land mine.

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.

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