Why I won’t be Lighting It Up Blue this year….

Autism is a cause very close to my heart. It has touched my life and those of my family through friends and through my wonderful amazing firstborn child. Those that know me know I would do anything for him. Anything to help him on his journey. And we have been very lucky to have had so many wonderful people walk with us and give my son the tools to blossom. So many people don’t have access to the therapies, the help, and the knowledge earned and shared with us along the way. I would love to find a way to make sure all families touched by Autism have the resources they need.

What I don’t believe however is that these beautiful children are a burden. And I also don’t think they need to be cured. This is a neurological difference. The way their brains are wired and process info is different than ours. I believe they need guidance and help to deal with what overwhelms them. They need us to find the best ways to teach them exactly how they learn. They need us to keep finding new and breakthrough ways to find them on their path and hold their hand while we show them the world. Therapies, research into new teaching methods, supplying knowledge and help to families who can’t afford those things……That is where I want my donation dollars to go. And I want to make sure that the world is prepared to make room for these kids when they are no longer kids. Adults living with Autism need services as well. And adults with Autism need to have a say. They can help guide us in the right direction. They should be involved in research, in developing new therapies, and in spreading awareness. They are walking the path and who better to guide us? I have done a lot of research into this as a whole and something disturbing repeatedly showed itself. I have read stories from places that are reputable and saw things with my own eyes that have made me question where we send our money.

 Autism Speaks is the best known name in Autism awareness. Chances are their puzzle piece and Light It Up Blue campaign have reached most everyone unless they are living under a rock. They seem to be a non-profit set on spreading awareness. A non-profit that pays their executives more money than it spends on supplying families they help they need. Now if we focus on the fact that their main objective is to fund research maybe we can over look the fact that the people who work for the non-profit are making insane amounts of money for themselves every year. Their research includes prevention. Prevention? How would we even prevent something when we don’t know what causes it??? One way of course it to find genetic markers that could be recognized in prenatal testing. Most people can see where this is headed. If we can know ahead of time that the child we carry has an “abnormality” then we can choose to terminate the pregnancy. If you have tested high on one of these tests for Down Syndrome, for example, then chances are you have had choices presented to you. More testing that makes you a nervous wreck waiting or just being a nervous wreck till the day your baby is born and finding out then. If you go for more tests and the results come back that your baby does in fact have said “abnormality” then you are given more choices. You can choose to keep going with the pregnancy and give birth. Or you can read all the facts about living with a child with said “abnormality” and possibly decide to terminate your pregnancy. You suddenly feel overwhelmed and alone. The clock is ticking and you are making a decision that will touch many lives. The whole world is on your shoulders. The problem with these tests is that they don’t always give you the whole picture. Yes your child has such and such. And yes, with some issues they can say with medical certainty how bad things are probably going to be. However with things like Downs and Autism there is such a huge array of differences in ability and how the person is affected.

 I have met people with Downs who can lead a regular life with minimal help. They are happy, they contribute to society, and they have relationships that are rewarding to both parties. The same can be said of people with Autism. These people can do all the same things. Yes there are people on the other end of that array as well as tons that fall somewhere in between. That is the point in developing new and better therapies. So if they were to develop a test that could tell you for sure your child had Autism before it was born then where does that lead?

 Until the last couple decades the info on Autism was much different than it currently is. Look how far we have come. Look at the things we have learned that help people with Autism. There are so many ways to help these people to give them the tools they need to live their lives. And why not? They are different, not broken. They deserve for us as parents, family, friends, caretakers, society to find the way to connect and include them. There are great rewards in that. I have been given so much by the people with Autism in my life. I have been taught that not everything different is wrong, that where there is love there is hope, and that patience and work is the key to almost everything in this life to name…. just a few. So how could I not advocate and spread awareness? How could I not be offended that these children could be subject to rejection before given the chance to take their first breath?

 If that isn’t enough I have read info and seen video that suggests that Autism Speaks sees people with Autism as a burden on their families and society. They believe that they cause so much turmoil in the family that the most likely outcome for most of these parents is divorce and financial ruin. I don’t believe this for one second! Can it lead to these things? As much as any other challenge faced by any family at any time. But, if one feels that way then an obvious solution would be to use the money a huge entity like Autism Speaks makes to help fund family counseling and to supply needed therapies. I think that would be the best way to help children and families affected by Autism.

 My last point is that until recently and with the pressure of people being outraged they didn’t have anyone with Autism involved in their organization. How can we make decisions about a group of people without their representation? There is a massive difference between being a parent of someone with Autism and being the person that lives with it every second of their lives! Every parent makes decisions for any of their children everyday that could potentially affect the rest of their lives. But, if you factor in the idea that most parents ultimate goal is raising their children to become self sufficient, decently adjusted, contributing members of society as adults then the best way to do that is to show them that they can be just that. By having adults with Autism contributing to the decisions and work done towards better understanding, awareness, and innovation then aren’t we in fact giving them that example. This is just some of what I found about Autism Speaks that bothers me. Google it, do your own research, make up your own mind.

 As for me Autism Speaks will not speak for me or my family. I will always choose to advocate, spread awareness, and to donate to see that families get the help they need. I just choose to research and find a charity that better fits my personal beliefs and that actually uses a good portion of the money they raise to help people because they believe that people with Autism are worth the time and effort. I can’t imagine the world without the beautiful souls I have met on my son’s journey. They are all gifts and they have all enriched my life. With that said….April is Autism awareness month either way so please reach out a hand, teach someone, show your support. These are my opinions based on things I have read and investigated. We are all entitled to our own opinions and I encourage each of you to do some reading and decide for yourselves. Here are a few places I started my search……

Issue 14 – Exposing Autism Speaks

https://www.psychologytoday.com/blog/aspergers-alive/201311/reporters-guide-the-autism-speaks-debacle

https://thecaffeinatedautistic.wordpress.com/2013/03/05/why-i-am-against-autism-speaks-and-you-should-be-too-2/

http://www.forbes.com/sites/emilywillingham/2013/11/13/why-autism-speaks-doesnt-speak-for-me/#11c03f445ad6

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