Saturday, April 23, 2011

The Downside of Autism Awareness Month


To sin by silence when they should protest makes cowards of men (women too)...Abraham Lincoln. Dramatic, you bet, but not wrong and very applicable:

Yes, you read the title right. There is a downside, in fact a dangerous side, to autism awareness month. No it’s not about making society aware of autism. No it’s not about talking and demanding acceptance and support that your child or you need. The dangerous part of autism awareness is the fact that every television and radio station gets on the bandwagon without knowing or understanding anything about autism.

These purveyors of the lamestream media (LSM) present charlatans and ignoramuses as reliable persons and then let them spew their garbage. They allow questionable people because they have DR before their name, push products and theories that are unproven and possibly harmful to your child. They allow someone because they can wiggle their butt in front of a camera (not just JM, but quite a number of those that play pretend for a living) talk and discuss what autism is, is not and how your child can be “recovered.” Luckily people have stopped talking about "curing your child." Thankfully Dr. Temple Grandin's life story and her advocacy against the term has had some kind of effect.  By the way, I hate that term recover. I really do. It’s not that my boys have not gotten better, heck they have. It’s not that collegeman especially is the poster child for what proper therapies and supports can accomplish for your child. But I never say he is recovered. He was never lost. He is still the same child he always was. He has just learned to function with an autistic brain. He and HSB have learned to compensate for the lack of functioning synapses, comorbid issues and learning disabilities that come along with the brain God gave them.

Sadly most of these very short segments are geared to the uninitiated or parents of the newly diagnosed. This is a very vulnerable time for parents and the fear and unknown can overwhelm them. These persons do not necessarily know where to turn or what their rights happen to be. They can be sucked into the arms of those what will bleed them dry of money leaving nothing for therapies and medications that are proven to work. Also as I have said before, none of these snake-oil salespersons are questioned by the LSM. They are given platforms on television and respect that they do not deserve.  Apparently investigative reporting is dead as a form of journalism if it doesn’t fit into a politically correct narrative that it’s the evil toxins in the air causing autism or the myth that won’t die about vaccines and autism. Above all noone bothers to let anyone know that the expensive therapies and supports needed by children and persons on the autism spectrum should be being given by the school districts. Your child is entitled to help and support until 18 or 21 years old, from the time your child is 3 years old. Before that  States are required to provide Early Intervention services from birth.

It is time that the national organizations that support and promote autism awareness protest these egregious idiocies. It is time that the Center for Disease Control (CDC), Department of Education (DOE), National Institutes of Health (NIH) come out and run a campaign telling parents and the newly diagnosed where to go for help. It is time that the Federal Communication Commission (FCC) clamps down on television “news” that promotes harmful and questionable people and programs. It is also time that media also acknowledge that just because you have someone on staff with a medical degree does not mean they know anything about autism. (I know it is hard for those with medical degrees to admit that they are not all-knowing, but guess what they are not.)

But mostly I think it is time for us parents to demand retractions when we see these programs that are potentially harmful to others. We know what works and what doesn’t work. We know because we have been there and we owe it to those coming behind us to prevent their abuse. I have emailed, tweeted and messaged on facebook. I have made my voice heard. But I cannot do it alone. I need help. It is time, when you hear or see something you make your voice heard and demand accurate informational sessions on this disability. If enough of us raise our voices in protest maybe one day we will be heard. Maybe we will help others avoid being abused at one of the most vulnerable times in their lives. It’s what being part of a community is all about. It’s part of the village we all need so that all our children have the futures of their choice.

I hate to borrow a slogan but in truth if you see something say something….

Until next time,
Elise

For more on your children's rights under law check out the sidebar of Helpful Websites: Wrightslaw, Special Education Advisor, US Gov- American's with Disabilities Act (ADA), Individual with Disabilities Education Act (IDEA). Remember these websites are just the beginning. Contact me through my profile if you have any questions and need some direction.