Marc,
Not trying to single you out but your comment about the video inspired me to write the following. You have many great ideas and I want to thank you for having the courage to share them here. This started out as a reply to my friends comment but some took on a life of its own.
Once again, great to hear from you. You make so many good points. I guess the video has been out a while now but it’s new to me. What I don’t get is the people on YouTube who oppose the video were saying things like “my child doesn’t need cured” or “autism isn’t a disease that needs cured”. People were offended because autism was compared to cancer and aids. The comparison was in the sheer number of people that are effected. I didn’t feel they were comparing wounds or paper cuts. Some didn’t like autism being blamed for failed marriages. I can say first hand that if you don’t think that autism is a strain on a marriage you are living in a fantasy world. Maybe you aren’t married or have some super powered marriage. Maybe you are just stronger then me. But autism is absolutely a strain on my marriage. It won’t beat us but I can see how it could.
Why can’t we admit the effect autism has on our lives. It’s not a reflection on our kids. It’s doesn’t mean we love them any less. It certainly doesn’t mean they are bad or even broken but instead face many challenges both behaviorally and socially. It DOES means that we are strong enough to admit that we might need help or that our family isn’t perfect. I think the courage and strength we all show day in and day out speaks for itself.
Maybe I’m alone in my belief that I want my kids cured. Not because my life would be easier but because their lives would be less challenging and maybe even more fulfilling for them. I thought we all wanted a cure? I was reading that we give only $62 million a year for research and spend $300+ billion on treatment. The numbers may be off but it’s something like that. It’s disgusting how little priority and attention autism research gets. Our priorities are pretty screwed up when as Marc said, we care more about keeping a star athlete on our local team then we do about finding a cure or even easing the burden of those with autism including their families that may need it..
If the explosion of autism continues it will eventually dominate the human population. “A-typical” people will become a minority and eventually be gone. Think about it in the mid 1980’s 4-5/10000 kids were diagnosed autistic. In the mid 1990’s 3/1000 kids were diagnosed autistic. In 2010 1/110 are diagnosed autistic (1/70 boys are diagnosed). Where do we go from here. Pretty soon every child born will be diagnosed autistic. We’re are at a point of no return a precibus if you will. This is a very serious problem that is not being made a priority. Well guess what, it needs to be. For those who think it doesn’t effect them, odds are at some point it will. How can so many people be effected by autism and so little be done about it?
There are actors,actors that get paid more per movie then autism research gets in an entire year. Where is our outrage? Where is our discontent? Where is our voice?
What I really love about this blog is that people are coming forward and sharing how autism has effected them. I’m so grateful for everyone who has shared their story. People need to know what the reality of autism is. The only way they will is if we talk about it. I hope more and more people will share their story, if not here then somewhere. We need to break the silence and make our voices heard. We should make sure autism is a major issue for the next election. We should support those with autism that can be their own voice. For those who can’t speak for themselves WE as parents, siblings, grandparents, teachers, friends or how about fellow human beings can be their voice.
I don’t understand why people wouldn’t want to make their kids better. I love my kids for who they are but they suffer a great deal and miss out on so many things. I want the best for them and if there was a way to take autism away from them I would do it in a second. I know there are many high functioning people out there that will take offense to this but autism doesn’t have as dramatic of an impact on their lives as someone who is low functioning. I am very happy that many people can live with aspergers and even overcome it and live a quality life but many others can’t. They deserve the same chance at life as everyone else. My kids deserve the same chance at life as everyone else. Without some type of effective treatment they may never get that chance.
I encourage you to share your story. You are always welcome to share your story here. I’m honored so many have and I hope many more will. If you need a place to just vent your frustration you’re welcome to do that here to. We all get frustrated and maybe someone here has the answer you have been looking for .
You all have given us your thoughts and prayers. Words cannot express how touched and grateful I am for that. You are all in our thoughts and prayers. I hope that doesn’t offend anyone. I want to help in any way I can.
You are not alone.
LT