I still want desperately to help her mitigate the challenges of autism. I still want to give Brooke the tools that can make life less hard for her. It tears my heart out to see her struggle. But to demonize autism is to demonize a big part of who my little girl is. And I find myself less and less capable of doing that. It’s messier than that. It’s sticky and it’s hard and it doesn’t lend itself to a surgical extraction. If we could eradicate autism today, I don’t know what would be left behind. I don’t know that I would recognize my little girl without it. It may scare the hell out of me to say that – it does scare the hell out of me to say that – but challenges and all, autism is part of who she is.
But I don’t claim to speak for anyone else. I stand in a unique place with a unique child, just like the millions of other unique parents with one of a kind children. I certainly don’t claim that no one should seek an all out cure RIGHT THIS SECOND. Of course they should. And I will stand beside them as they do. I can’t make that decision for anyone else. Hell, I’m admitting that I don’t even feel like I can make it for my own kid.
Middle Ground – Diary, September, 2009
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.
The White House Part Five – A Spectrum of Words – Diary, April, 2011
When you judge another, you do not define them, you define yourself.
I’m about to wade into some treacherous territory, my friends. Territory that I typically try to avoid at all costs. But I can’t help it. Because I’ve been chewing on this for days. And when I chew, I write. It’s what I do.
Last week, I wrote a post that seems to have made its way around the Internet. According to WordPress, it’s been read by nearly thirty-nine thousand people in the last seven days. Which is humbling. And quite frankly, a little terrifying. Because since I can’t possibly name thirty-nine thousand people, I no longer have any real idea of who my audience is, meaning that I have no idea how y’all might read what follows. And even scarier, it means that you may not know where I’m coming from as I write it.
But I have to write it.
At the risk of boring to tears those of you who have been around here for a while (and have I told you lately how grateful I am that you stick around?), I’m going to try to give the new folks a quick sketch of who I am and what I believe. And since none of us has time for the long version, I’m just going to share Diary’s comment policy. Why? Because I think it sums it up pretty well. And it’s a whole lot quicker than regurgitating everything I’ve ever written.
So here goes ..
My greatest hope is that the discourse on this blog and its accompanying Facebook page can serve as examples of environments in which compassion, understanding and mutual respect are paramount.
That said, I publish nearly all comments, but there are rare exceptions.
I have long been frustrated and deeply saddened by the chasms in the autism community. I will not allow Diary’s comment section to become a megaphone for the anger that serves to keep us divided.
I will not abide personal attacks, either on me or my readers. While I actively welcome constructive disagreement and respectful discourse, this is not a forum for unproductive anger, particularly that which is directed at one another.
While I am happy to respect anonymity, please note that I also do not publish comments without a name (or consistent pseudonym) and a valid e-mail address.
From the bottom of my heart, I thank you – not just for sharing in our family’s journey, but for joining the conversation. And in so doing, respecting each other, supporting one another, and finding ways to bridge the space between us.
It is in that vein that I write the following.
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 ASD. 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 Brooke’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?
Luau and I have not pursued bio-medical 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 biomed 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.