I have received much flack over my views on recent Autism research results, and I have also received just as much agreement. So, as with everything it seems there is a split among our community of parents of children with Autism.
Recently, it was announced that Autism is caused in part by the internet. Okay, now let me clarify before I get deeper....yes it is important to research Autism and find the root cause or causes to provide better treatment for our kids and possibly (now I am very hesitant to promote this) a cure. But, seriously.....the internet! Is this where the millions of dollars donated each year go! Are we at the point where the findings are so slow that they feel they have to feed us something? Is this the level of common sense the people who are being paid insane salaries from the Autism funds are on? Autism has been here much longer than the internet and not to mention as widely accessible. Heck, isn't it highly rumored that Bill Gates himself is on the spectrum? Doesn't this put us at the age old chicken or the egg debate?
I had a Dr. respond to one of my posts, on the Google+ page, that insisted Nutra Sweet has caused Autism. Many children are diagnosed at an age of under 3 years old. How much Nutra Sweet are they ingesting? I can honestly tell you, my son had zero servings of this chemical prior to his diagnosis. I think we are missing the boat on a vast majority of our research. Millions of dollars every year go to someone who's best effort gives the internet to blame. Hell, lets save the money and the time of researchers and just blame it on George Bush!
I honestly have only heard two suggestions that make any sense to me at all. While I don't think the full blame or all cases can be place on it, Vaccines are certainly a logical possible cause. Heredity, is also very possible. Think about ADHD. Now a lot of children with Autism also have pretty severe ADHD. This is something that wasn't diagnosed in my time, and I'm only 38. I did demonstrate enough developmental and behavioral issues that would easily get me that diagnosis today. I was branded a trouble maker. I strongly believe that many high functioning autistic children received this same judgement back then and this also contributes to SOME of the increase in cases. I think it is logical to assume that in some cases heredity may play a factor.
So, millions of dollars every year to come up with two logical causes. How about some of that donated money goes to assist in providing services to families who cannot afford the latest in therapies. I live in a state that provides very well for children as compared to other states. I still average thousands out of pocket every year to provide my son with a good Psychologist, music therapy, music lessons, programs...and the list can go on an on. Is knowing what causes Autism going to cure our children? Very doubtful. We may get a good sense of what causes it and another tool to attack the worse symptoms, but the Autism is still going to be there and once we are still going to need to press on with therapies and anything else available to better our children's lives. How about shedding 10% of that money to assist the families who are barely making it by providing the bare necessities to their children. How about providing them the opportunities to give more out of pocket services to these kids?
Please re-read this before you formulate your mob to hunt me down, I do agree that research is an important part of the fight against autism. I just think it is time we stop giving answers for the sake of giving answers and put more thought into what is released. Let's stop throwing darts at a dart board to place the blame and start utilizing our resources to provide the most we can to children on the spectrum.
Sunday, August 21, 2011
Monday, April 25, 2011
Owning Autism
I normally don't like to rant, but I am receiving more and more negative responses to postings on the Owning Autism wall as well as other pages on Facebook. It is obvious my definition of "Owning Autism" and others are greatly different. When I envisioned Owning Autism, it was not a dream of curing Autism, I am a realist and I know that Autism will never be cured for those who already have it. I hope that one day there will be a preventative cure to protect future children, but I believe our children are who they are and now we have to help them live their lives to highest standards possible for each of them.
I have received posts from people stating such things as "you are spreading false hopes, Autism cannot be owned. There is no cure." and "you are living in a dream world, wake up and help your child progress." You will not read these on my page's walls or attached to my posts on other pages if I see them before you. Yes, I delete them and will continue to do so. Spitting on someone else's hopes and efforts will do no good for anyone including those writing them. The purpose of "Owning Autism" is to support those with Autism and their families. Its purpose is to celebrate the smallest of accomplishments and progress, because as the parent of any Autistic child knows, there is no "small accomplishment".
Owning Autism is not coming to a point where it no longer exists; it's acknowledging its existence and continuing forward. It is listening to those who tell you there is no hope and proving that there is. It's the young lady who after years of being non-verbal, begins communicating to her family through the keys on a laptop. It's the boy who picks up a basketball and makes the winning shot to win the game for his school. It's the little girl who says "mama" after seven years of being non-verbal. It's the boy who uses the toilet on his own for the first time. It's the mother who continues to sit with her child day after day for weeks working on one task and breaks into tears when that one little task is completed. It's the father that straps his 18 year old son to an adult stroller, raft, and a bicycle, and helps him complete a triathlon. It's the mother who cheers and treats her son or daughter as a hero when they strike out in a baseball game. It's the child that plays in this baseball game no matter how well they do. It's the mother, father, boy, or girl that gets up day after day and smiles, always continuing forward. It's the mother who takes on the world to gain every advantage and right for her son.
No these owners are not perfect, and they don't always see the results that they want, but they are always successful because they never stop trying to move forward. So no, I am not trying to spread false hope. I am not telling people that they are going to cure theirs or their child's autism. I am celebrating with them every success and every day that they define the art of Owning Autism!
I have received posts from people stating such things as "you are spreading false hopes, Autism cannot be owned. There is no cure." and "you are living in a dream world, wake up and help your child progress." You will not read these on my page's walls or attached to my posts on other pages if I see them before you. Yes, I delete them and will continue to do so. Spitting on someone else's hopes and efforts will do no good for anyone including those writing them. The purpose of "Owning Autism" is to support those with Autism and their families. Its purpose is to celebrate the smallest of accomplishments and progress, because as the parent of any Autistic child knows, there is no "small accomplishment".
Owning Autism is not coming to a point where it no longer exists; it's acknowledging its existence and continuing forward. It is listening to those who tell you there is no hope and proving that there is. It's the young lady who after years of being non-verbal, begins communicating to her family through the keys on a laptop. It's the boy who picks up a basketball and makes the winning shot to win the game for his school. It's the little girl who says "mama" after seven years of being non-verbal. It's the boy who uses the toilet on his own for the first time. It's the mother who continues to sit with her child day after day for weeks working on one task and breaks into tears when that one little task is completed. It's the father that straps his 18 year old son to an adult stroller, raft, and a bicycle, and helps him complete a triathlon. It's the mother who cheers and treats her son or daughter as a hero when they strike out in a baseball game. It's the child that plays in this baseball game no matter how well they do. It's the mother, father, boy, or girl that gets up day after day and smiles, always continuing forward. It's the mother who takes on the world to gain every advantage and right for her son.
No these owners are not perfect, and they don't always see the results that they want, but they are always successful because they never stop trying to move forward. So no, I am not trying to spread false hope. I am not telling people that they are going to cure theirs or their child's autism. I am celebrating with them every success and every day that they define the art of Owning Autism!
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