Tuesday, April 2, 2013

Autism Numbers - 1 in 68. Who is celebrating?

April is Autism Awareness Month. I hear so many people asking how others are going to "celebrate". There is no "celebration", unless it is celebrating the accomplishments our kids make. Or celebrating the parents and the family members who make countless sacrifices every day. No, Autism is NOT cause to celebrate.   What it is, is a cause  for panic- why are the numbers climbing? Why is NOTHING being done about it?  Why are so many useless "studies" being done? It's all about maternal age. No wait, it's all about paternal age. Oh no, it's about how close you live to a freeway. GAHHHH!!!

I  use platforms such as my blog, my Facebook page and my big fat mouth to push autism awareness, action and acceptance. I will shout it from the rooftops. I want to make people aware of the EPIDEMIC that is Autism. I don't celebrate it. I don't know many who do. I celebrate my son's accomplishments. I celebrate his milestones. I celebrate his amazing little self- but I DO NOT celebrate the fact that he is 1 in 68 children that are diagnosed with this disorder.We should honor and celebrate those that  live with autism and face and overcome more challenges than a lot of people could ever imagine.  

Then you have Autism Speaks- the first organization it seems that comes to mind when talking about Autism. It is  easily one of the biggest and loudest voices talking about autism.  Some questions I wish more people would ask about  Autism Speaks- aside from why they mismanage the money gained off of hopeful families walking in circles- where are the Autistic people on their board? Why do only 4% of the funds raised actually go to the families that need them? WHERE DOES THE MONEY GO?? 

And to bring up the MOST controversial of topics- the fact that AS has said repeatedly that vaccines and autism cannot possibly have any link to one another, but, in 2009  Dr. Geraldine Dawson says almost the exact opposite. "It remains scientifically plausible that the challenge to the immune system resulting from a vaccine (or other immunological challenges) could, in susceptible individuals, have adverse consequences for the developing brain." and  "Evidence does not support the theory that vaccines are causing an autism epidemic. However, it is plausible that specific genetic or medical factors that are present in a small minority of individuals might lead to an adverse response to a vaccine and trigger the onset of autism symptoms."  Oh- and when I went to look at this interview with her- I got an error message on the AS website ACCESS DENIED. Hmmm... interesting

So if you want to know why I no longer support  AS,  follow the link- you will see one BIG reason why. Autism Speaks Financials shows salaries of upward to $400,000 dollars! SALARIES! Add to that a very large lobbying budget, and the fact that  44% of Autism Speaks’ budget may go  toward research, but only a small percentage of these funds go towards research into improving the quality of life of autistic people.  Hell- I want a CAUSE or CAUSES pinpointed for the huge upswing in Autism- then perhaps a cause will lead to a cure and so on and so forth- but the simple truth is there are already way too many children and adults already diagnosed- who are struggling NOW.  I would love to know how many of these families and individuals have actually received the Autism Speaks Family Grant, and how much they received.  

I know many say that Autism Speaks advocating for a "cure" is discounting anyone with autism, and portraying them as  burdens.  I can understand that. And  I am not an advocate for a "cure" necessarily. But when I talk to the mom who is still changing her 10 year old son's diapers or the dad is holding on to the hope that his daughter will one day make eye contact and say she loves him- I have to say would a "cure" be so bad? 

 All of that said- I do not begrudge anyone their opinions or beliefs.  I will not be rude,  or mocking of anyone who believes in AS. I once did too. And my opinion is not everyone's. Just like my "Educate before you vaccinate" stance- I encourage people to look into local charities for Autism, or The National Autism Association as well, before throwing all of their money at Autism Speaks.  Do your own research- and make decisions based on what YOU feel is best for you. I did.

In  the meantime- I will be an awareness junkie. I will read, research, talk, and write for Autism Awareness, I will shove facts, figures and stories in your face - just in the hopes that you will pass on that knowledge to someone else. This is how awareness is spread- from me to you, from you to your spouse or friend and from them to someone else. I don't expect you to become and expert- I am not an expert - but I know a hell of a lot- and you might  learn a thing or two from me. 

This is not a month to celebrate. This is a month to learn, and to teach. Parents of autistic children, and adults on the spectrum are a wealth of knowledge that only want the rest of the world to understand. We need to tell our stories so that people  will begin to understand and accept our loved ones for who they are, what they are capable of doing, and not what is “wrong with them.”   They are human beings living here with us. They are smart, funny, capable, loving and not going away.