I have struggled with writing this post (as I tend to do with anything that can be perceived as a controversial topic) for a few days now and this is because I have grown into a person that does not thrive in controversy any longer. I have my opinions and at times, feel the need to share them, but when asked to defend them as I often do (as they are rarely on the side of popular opinion), I crumble. I was once a person that debated my way to a national level and now when pressed for my reasoning I tend to find myself just backing down. I do not want to fight or stand firm as I once did in my youth since as an adult I find that people feel passionate about what they believe, every iota as much as I do, and who am I to fight that? Who am I to be someone that tells them that what they feel is something to be debated at all?
Though with all of the up and down and the controversy surrounding the “Light it Up Blue” campaign portrayed by a widely known Autism awareness organization, Autism Speaks, I feel that old itch to put my two cents in. It could come back to bite me, of this I am certain as my opinions often do, but I think it needs to be said.
I am going to begin with a personal story and perhaps, even if one does not agree with my ideals, you may see where they stem from and that will breed understanding. As wildly ironic as this will sound for those of you that do not know this about me, I worked with children with Autism for years growing up. At the age of 12 my mother decided that, to keep me out of inevitable trouble and teenage mayhem that occurs over the summer with too much precious free time on your hands, that I was going to volunteer in my community. She let me pick any program that I chose and it was my decision to work for the youth Autism program. I had no idea what it truly was at the time but I loved working with children and thought it would be a good fit.
Within a few weeks, I learned what Autism was. How it functioned and I saw glaring and horrible errors with the training and education of the teachers. Everything involved in the training was all about acclimate, acclimate, acclimate. Make them like us. I was told that one day they had to live in our world so we had to “train them” (yes, you heard me, like puppies) to be like us. Even at such a young age, I knew this was a falsehood. These were children, not dogs, and we didn’t need to train them at all. I never listened. I would sit down everyday and find what made them tick. What they did and didn’t like and why. I never forced them, I never made them, and I always listened even when the child was nonverbal. They don’t have to speak words for you to hear them. They would communicate in extraordinary ways that if you just took the time to figure out the “code” then you could be a part of their world. They wanted to let someone in, they really did. People just didn’t know how, 20 years ago, to listen. it broke my heart to watch teachers force them and hold them down while they tried to “break” them of the sensory issues that terrified them. It shattered my spirit to hear them scream from hunger when they weren’t given foods that they wanted so that they would eat something “different”. That was the way Autistic children were “handled” twenty years ago. Forced acclimation.
I made it my mission to do what I could where I could in the school. I befriended the children and made my way into their worlds. I became known as a whisperer, of sorts (and please know that I say that with no sense of ego whatsoever. I am simply bringing to light the state of affairs back then) and when there was a tantrum that a teacher couldn’t “handle” there I was. I would sit with them and yell with them as well. They trusted me and I trusted them.
Every year for the next 5 years I went back, eventually as a paid part time Aide. I still am in contact with many of the parents of the children that I worked with today. These were great kids, beautiful and proud and full of life. They didn’t need to be trained or broken, they needed to be understood and guided. And over the years, I saw the training in the teachers evolve, as well. The more the light was shined on the concept of Autism, the more research and development of new techniques there were. It changed the game in such a huge and wonderful way and I went from being horrified at the way they were treated to being proud of the advancements and grateful that I felt like a tiny part of it even for just a few years.
Does there need to be Autism awareness?
Yes! There truly does. People need to know that this is not a disease. This is a way of life, a manner of thinking, this is the very core of who some people are. The rest of the world needs to know that and they need to be aware of the wonderful people that have Autism and how they can and do benefit our society.
But, and this is a big but…
Autism Speaks is not that organization. Buying that blue ribbon or light bulb is funding the treatment of autism. I know that to those who don’t know anyone with or are a part of someone’s life that has autism, this seems like a wonderful plan. Treatments are for diseases. This is not, I repeat, not a disease. This is being different. Autism Speaks uses language to describe Autism that take me back to what I call the “dark ages” of the disorder (from several decades ago) like “crisis”, “disaster”, “hopeless”, and “epidemic”. None of these things are what I consider to be a healthy voice for people with Autism. How can I stand behind that when it is the epitome of what caused forced acclimation in the first place? This organization, in my humble opinion, is a monumental step backwards in Autism awareness.
Does there need to be Autism awareness?
Yes. I just don’t think this organization is going about it correctly. The funding needs to go to new methods of teaching, equipment to facilitate communication in nonverbal children, research into the sensory issues and making household items easier for them to handle. Not treating it as though it was a disease. I know, Lord I know, how difficult raising a child with Autism is. I watched parents in denial and fear and self hatred for years going through it. It is something that even parents like myself with atypical children will never, ever understand. Though I don’t believe that the children should be asked to suffer because it is hard on us. I think giving our money to an organization that wants to change our children is abhorrent. If you want to raise awareness for Autism, I applaud you, I do with every fiber of my being. But please, look into the place where that money is going. If you truly heed the message of raising awareness for people with Autism then don’t give your money to the people that want to eradicate Autism.
Heed the message…but for goodness sakes, kill the messenger.
Childhood Development Musings Parenting Parenting and Childhood Development autism autism awareness autism speaks autistic children blue light charity developmental delays fundraising light it up blue parenting special needs
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