Tag Archives: bureaucracy

Aware Again

English: Logo of World Autism Awareness Day, A...

English: Logo of World Autism Awareness Day, April 2, by UN (United Nations). Português: Logo do Dia Mundial de Conscientização do Autismo, 2 de Abril, criado pela ONU (Organizações das Nações Unidas). (Photo credit: Wikipedia)

As I have written before, we can track Evan’s late-March autism diagnosis directly with World Autism Awareness Day each year.  And, as I’ve mentioned in the past, that coincidence has been both a blessing and a curse.  The first WAAD was about 5 days after he was diagnosed, and the onslaught of autism information everywhere we turned was at once informative and overwhelming.

As Evan has grown and developed, so has the world’s understanding of his condition.  And, as was bound to happen, so have the ways in which people define, treat, study, and think about autism.  In recent years, I have noticed more rifts and disagreements among those involved.  Discussions and disagreements have gone from “What therapies are you guys trying?  We have been considering that; right now we are researching this one” to “I can’t believe they are still doing that.  Everyone knows that this is better.”

These differences have also spread to the organizations that represent the autism community.  For the past six years, our family has chosen to help raise funds for Autism Speaks.  Years ago, we noticed that they seemed to be the most globally organized powerhouse when it comes to research funding, lobbying efforts, and public information.  However, there is also a host of phenomenal smaller organizations that are focused on other important issues related to autism.  And, as happens in so many other arenas, the large powerhouse can do things that negatively affect the smaller organizations.  (Cancer survivors who have tired of seeing that familiar pink ribbon know how this goes).

For us, this means that we also try to support a handful of smaller organizations that we feel are doing great things.  I try to stay away from heated rhetoric that pits one well-meaning organization’s members against members of other groups.

I also reflect on our progress as a family and, most importantly, Evan’s progress as a person with autism.  I realize that without the high profile of the large organization, our community would not have nearly the resources or understanding that we enjoy now.  I also recognize that without the efforts of those who were in this business long before Autism Speaks came around, the therapies that benefit Evan most would never have been established.

But mostly, I look at the people around us who continue to amaze us.  This month, a bureaucratic disaster led to Evan (among many other children) mistakenly being dropped by the state, which meant that some of his most necessary services would no longer be available to him.  In the days that I spent untangling this mess, I encountered truly selfless individuals, some working free of charge, to help us get what Evan needs.  Nobody asked what group I back, what our philosophy on scientific research is, or what behavioral approach we follow.  These people simply put Evan and his needs ahead of all else.

We are now halfway through Autism Awareness Month, and my wish is that all children receive the access, understanding, and care that they need.  (In case you are wondering, far too many do not).  I hope that legislators, researchers, school districts, fundraising groups, and academics can put personal agendas aside and work together toward common-sense solutions to help this generation of children.