Monday, July 23, 2012

The Politics of Autism-This is a Safe Blog

This post has been in the works for awhile. It is the second half of my post about Thinking for Yourself. That post dealt with parental guilt, parental self-care and parental intelligence. Today I want to talk about the politics of the autism community and the marginalization of those that don't tow the preferred political line.

As my readers know, the purpose of my blog is to try to help parents understand their options in helping their children. I regale everyone with stories of what worked and what didn't work for my boys. I try to give practical advice for impractical situations. I do my best to remain upbeat, even though I do have my own moments of being overwhelmed. I turn noone away who needs help. I marginalize noone who asks for help. I don't care who you are and where you come from. I don't ask to see your political affiliation card, nor ask your religion, ethnic background or country of origin. The only criteria I need to help someone is that their child has autism.

But one thing I do notice in the autism community is that someone somewhere decided who the leaders are and who they are not. Which side are you on? Autism Speaks or the Self-Advocacy Network? Biomedical diets or strict conventional therapy? Homeschooling or inclusion or something in-between? Total societal revamping or preparing your child for the realities of societal norms? That there is a thing such as normal versus that there is no such thing as normal? Never even mind democrat versus republican...Obamacare care versus no-governmental centralized healthcare...Religion versus secular...Too many people have decided that you have to choose sides. Well that doesn't happen here.

Not that that really is a big deal, choosing, but when you disagree with these self-anointed powers that be, then somehow your voice doesn't get heard. That if you disagree with either side and the conventional wisdom of the day, a maelstrom ensues. But not one that is loud and boisterous, but one of deafening silence, where your thoughts, opinions and cares go unnoticed and disrespected.

It's more than an extension of the politically correct crap that we see everyday. This is more than the nonsense children face at school and on college campuses where certain opinions are ostracized and people made to feel less because of their belief systems. This goes so far as to deny people the right to choose how they want to bring up their children and what they will do to protect their children. Each side even tells you what words you may use in a conversation and how you are to refer to your child.

No, I am not against the movement to stop name-calling. Having been the victim of on-line bullying it is not fun at all. But I am tired of the fact that some people out there, in whatever universe they inhabit, think they can tell you how to discuss, approach and intellectualize a personal situation. Because let me tell you something, raising a child, especially a child with a disability is a hugely private endeavor. One that is fraught with uncertainty, fear and a search into the unknown.

People need to feel safe when they ask questions. People need to feel free to use whatever language they want. People need to feel free to grasp at ideas, thoughts, notions, perceptions that they think will help their child. Name-calling, marginalization, self-righteousness and quite frankly a pole-stuck-up-your-butt does noone any good. No one person has all the answers for someone else. Life just doesn't work that way. I am tired of all those out there who think they know everything and its their way or nothing.

Listen, I am tired of watching everything I do and say when it comes to the autism community for fear that someone somewhere is going to get their knickers in a twist. I am afraid its not going to happen anymore. I am from this moment on declaring my adulthood. All are welcome here. No one need be afraid to ask anything and everything in anyway they want. There is no judgement on this blog. Except if you come here with a chip on your shoulder thinking you are better than everyone else or your choice in parenting makes you a better parent then someone else (that includes celebrity and non-celebrity types). These ideas are just terribly hurtful and denigrating. These ideas are anything but helpful and will not be tolerated.

There is one more very important caveat however:   I will warn you, if you promote harmful medical procedures, I will not accept that as a parental choice. There is no such thing as hurting your child in order to help them. I have no issue with asking about these procedures. I will point you in the right direction, but do not think that they are accepted by me simply because everyone is welcome here.

I know there have been calls for unanimity in the autism community but it is never going to happen. When you have at least two people in a room you are going to have varied opinions. The best we can hope for is that people do not sabotage each other, and that respect will flow to one another. Maybe someday somewhere there will be a cohesive view of how to help those with autism. But I do not see that anytime in the near future. And truthfully, when there is only one modus operandi for something that generally leads to stagnation and atrophy too. The way to keep moving forward is to constantly question what you are doing and how helpful is your regime. You can't do that if there is no leeway in protocols.

But in the meantime, let me reiterate:  this blog is a safe place for questions, ideas and thoughts. There is only help here and no judgement.

Until next time,

Completely politically incorrect,


Elise