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Rather than criticize Autism Speaks what have you done to help

World Autism Day
World Autism Day
Photo by Buddhika Weerasinghe

Thanksgiving is a time of reflection. Whether or not we articulate or contemplate our thanks is personal. I am thankful for my family. Autism is a distinct part of our lives and we have loved and learned to live with the infinite possibilities that face our son.

I am thankful for Autism Speaks, who put autism awareness on the map (even in China-pictured ). I am thankful for the Autism Science Foundation that has endowed scholarship in the field of autism research. I am thankful for every business who takes a chance employing individuals with autism. I am thankful to insurance companies who accept autism treatment in their plan. I am thankful to teachers who have the audacity to say “I don’t know, but I am willing to try”. I am most thankful to my child who has made me a better person, simply because of who he is.

A friend quoted a friend who said “Bitterness is a table for one”. But there is probably bitterness and palpable sadness when we see our children in pain. So goes the story for many families living with autism; and perhaps, at times we do feel alone and helpless.

It is not for me to judge how my friends or even strangers reflect on their lives with autism. It is a rough road for so many families. Grandparents may have the toughest time, as they suffer for their child who is suffering for their child; an endless circle of sadness.

Suzanne Wright, co-founder of Autism Speaks and grandmother of a boy with autism, wrote her passionate message on the website before she went to lobby in Washington. Her call to action was fervent: If three million children in America one day went missing-what would we as a country do? If three million children in America one morning fell gravely ill-what would we as a country do? Her words were met with great controversy. I am not sure I do understand the backlash. Many individuals who have autism, who did respond with criticism, were able to articulate their disapproval; a fact in and of itself that demonstrates the significant range in diagnoses. A substantial number of people with autism would have been incapable of communicating their pleasure or displeasure.

What I do know is that no one has the monopoly on autism. No one can judge what transcends the new normal of living with autism. Whether it is endless nights with inexplicable wailing, or the vacuum of non-verbal emptiness, it might be accurate to note a kind of despair. I cannot judge, I can just empathize.

While I have no concept of how a national plan would work, I do believe that attention is needed. It is not a one size fits all project. There is no simple tool kit. Families do need help. Research is vital. Jobs are essential. Community matters.

So is all of this about awareness? Is the rhetoric about semantics? Clearly, we don’t want our children to be thought of as kidnapped or ill. We want our children to be accepted and respected, as individuals. Suffice to say, those who wrote comments want the same.

What have you done to make a difference? That is the operative message. On this day of thanks, think about your list of thanks and hopes for the future, and what you can do to make it happen.

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