More than anything, I want my children to thrive, to grow, to achieve the level of independence they are capable of and to walk in the world.
We haven't gone too far down the woo trail to get there. We did start the GFCF diet after reading the compelling anecdotal story by Karyn Seroussi. Now, I have no problem with folks who have allergies using the diet. I have no problem with people deciding to restrict certain foods. I'd argue that it's important to make sure they eat a balanced diet, but beyond that I don't care what you eat or why. I say our journey of GFCF was woo-based because of the reasons it was implemented and that the research on whether gluten or casein turn into opiates in the bloodstream and that one can recover her child from autism by using the diet. **I'm not saying other people's use of GFCF is woo unless they think gluten and casein turn into opiates that drug their kids. I don't care what you feed your kids. Although, my thought is if you're going to take foods away from your kids on an idea, you ought to take them away from yourself, as well. True issues: not woo.**
Oh, and full confession, we once tried Ojibwa tea when I was in my herbal medicine phase. Nasty stuff. Umm, I also have some lovely crystals, too. :) And essential oils. The oils smell lovely. The crystals are pretty. I don't think they do anything other than enhance and improve mood because smelling the oils and looking at the pretty rocks make me happy. The Ojibwa I wouldn't even wish on my worst enemy. Ick and double ick.
At any rate, my point was that was as close as I got to woo for autism: the gfcf diet. That's it. And again, I'm not bashing anyone who's using it. More power to you. I hope you know that rice flour is the mortar holding the Great Wall of China together, though. Explained a lot about my baking. I loved baking. I did. Before GFCF, I made my own pasta. I baked my own breads and cakes. Ah, I loved it. Loved cooking. Four years of GFCF and baking things that no one really appreciated, things that made me think I had ALS because I couldn't swallow...I've never recovered. It's been 2 years and 40 plus pounds since we walked away from the GFCF diet and we've enjoyed the hell out of ourselves. And there's been no regression. The kids are fine and continuing to progress and love the occasional treat of McDonalds.
Other parents go further into what I call woo; their need to do anything to help their kid certainly understandable. I can understand that need, that desire. But having started my woo with Ojibwa tea (which I drank with the boy), well, it was a bit of a deal breaker. No proof, just anecdote. And it could cure anything, including cancer. Once I got over my attraction to the thick packet of testimonials (they are convincing) and realized my aversion to the Ojibwa wasn't going to be overcome (and if I wouldn't drink it, no way was I making the boy drink it), I began to work on improving my critical thinking skills.
You could blame this all on Ojibwa tea, in a way. And rice flour.
My thought is, if you want to follow woo for your kid (or if it's more palatable to you, alternative treatment), if you're going to do it to your kid, you first have to do it to you. Chelation suppositories? First you do it for six months. Nicotine patches? You first. Restrictive diets based not on allergies or because of epilepsy? You first and you along with your child. Fecal transplants done at home and based on what you read on a yahoo group? You first.
In other words, accountability. Own your actions by owning them, living them. If it isn't standard of care, based on evidence, and you're ordering it off the internet or following it because you read a book, then do it to yourself first.
Parents need to take responsibility for the decisions they make for their children. They need to hold themselves accountable. And they need to think past their desperation to their responsibility to their children to not harm them. Parents ought to have compelling reasons beyond testimonials for the treatments they select. What are the risks? Who's selling the treatment? What claims are they making? If they're going to be paranoid about modern medicine, they ought to be doubly so about unregulated companies offering to cure their kids.
It occurs to me as I write about parents being held accountable, that the other As apply to them equally as they do to the autistic individuals we've argued deserve acceptance, accommodation, and appreciation. People's humanity, period, means they deserve to be accepted as caring, feeling individuals worthy of compassion. We've all got issues, and within our families, we tend to accommodate these issues. Our workplaces accommodate (some better than other) some of these issues, as well. Everyone deserves to be appreciated and cared for.
And all people should be held accountable, to the degree that they are capable of, for their actions. All people. Note, I said to the degree capable,. And I didn't say a word about laws. What I mean is this: my children have to learn what behaviors are acceptable and what behaviors are not. They don't get to go beat the crap out of people and blame autism. They don't get to treat people like crap and not be held accountable.
No, they don't always get what the appropriate behavior for the situation is, but it's my job to teach them what is and help them practice it until they can comfortably engage in the appropriate behavior. While I'm doing that and they're working to master the skill, it's also my job to get them the accommodations while we work on that skill. And it means, that when they do something that isn't okay, they have to take responsibility for it. Even if no harm was intended, if harm was done, the attempt to make restitution must be made.
Now, they're on the spectrum. They do the best they can, but they don't blend. They don't do the socially acceptable behavior without a lot of prompting and a lot of work, and sometimes it can be interesting as hell to take them to town. They're not bad kids, though, and so their behaviors are more related to stims and the completely unavoidable honest blurtings and the occasional meltdown. And those I'd argue, if they aren't hurting anybody, are accommodations that can be made. If my Rosie wants to sing in Wal-mart, well, isn't that a treat for all? She's a happy girl who thinks she's living a musical. Deal with it. :)
Accountability is one of the most important lessons I can teach my children. It isn't an easy lesson. It's one that we struggle with each day, but it's one I am determined they learn. They must own their actions, intentional or otherwise because the wider world is going to demand it. Autism can be an explanation and it's often a really good one that gets the accommodations needed, but it should never be an excuse.
We have an obligation to our children to explain to them why some things they do are not okay, and that's to all our children. That's parenting. Period. We're trying to instill civilized behavior into our children, regardless of any special needs or extra issues they might have.
We have to work with them to get them to temper their black and white thinking, which is not an autistic-specific trait and is widespread in neurotypical people, as well, and we have to teach them that while it's okay to believe strongly, it's not okay to trample over other people until those people capitulate. That is unacceptable behavior in anybody. That's the behavior of a bully. Harassing people, intimidating them, calling for other people to harass them until they believe the way you do is the behavior of a bully. And I don't care who you are and what your issues are.
Accommodations should be made, attempts to communicate how harmful and hurtful that behavior is should occur. But when those attempts are unsuccessful, when the behavior continues unabated, the person is accountable for his actions. It doesn't matter that the person believes strongly. It doesn't matter that the person thinks he's in the right. All bullies do. We all act out of the certainty that our position is the right one.
Accountability is necessary. If we respect people as equal, we hold them accountable for their actions. It's the price that must be paid to be a fully participating member of society.