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Panelist Reflects on World Autism Awareness Day at the UN

Guest post by Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership (GRASP)and the Asperger Syndrome Training and Employment Program (ASTEP)and the author of Asperger’s From the Inside-Out.

[Editor’s note: Mr. Carley was a guest panelist at the World Autism Awareness Day event “Delivering Answers through Inclusive International Collaboration,” held at the United Nations on April 3, 2012. The panel discussion, moderated by ABC/CNN newswoman Christiane Amanpour, was co-sponsored by Autism Speaks and the permanent U.N. missions of Bangladesh, the United States and Qatar.]

Before earning my livelihood in the autism/Asperger field, I worked as a minor, minor-league diplomat at the United Nations. So it was a great homecoming for me to be speaking at this institution once again during its Autism Awareness event with Autism Speaks on April 3, 2012 – more than a decade after I’d switched careers.

A lot of what I spoke about was (my) standard concerns about how we implement change being just as important as implementing change. But I also felt it a great opportunity to share with others how my past U.N. experience – at times in countries in great peril – has influenced my work in the autism/Asperger field, especially with regards to looking at the big picture rather than giving in to those times when we feel overwhelmed.

For starters, it was during my U.N. tenure that I and my son (then 4 years old) were diagnosed with Asperger syndrome. Soon after examining my diagnosis, I saw that having Asperger syndrome was rather like speaking a foreign language in my own native land. In navigating the world as I grew up, I had to learn to communicate using what, to me, was a strange tongue.

The trick, however, isn’t just learning, it’s how we learn. We have a much harder time when we are forced to learn using methods that reject our natural ways of doing things. Forcing such an unnatural approach can result in the learner’s loss of self-esteem and in turn, can easily stagnate the ability or desire to learn more.

When I worked in regions undergoing crisis, I also came to appreciate that those of us fortunate enough to live in one of the most economically solvent nations on earth can develop exceedingly high expectations and sense of privilege.

So when life throws something unexpected at us, such as an autism-spectrum diagnosis, our sense of injustice is proportionately more than might be experienced by others living in more economically challenged communities. We tend to lash out more, and we look for someone to blame more.

Happily, we have improved dramatically as a community in this regard over the last decade. But there is still tremendous room for improvement. Due to the lack of services, families and adults are experiencing incredible hardships at times. But we who are fortunate enough to be in leadership positions would help them infinitely by steering their energy more towards obtaining the needed services that don’t yet exist, rather than inciting them to lash out more.

Emphasizing hope and optimism in our campaigns is not only helpful, it’s also accurate.

Like most kids diagnosed at the turn of the millennium, my son has far exceeded his initial prognosis. That’s due somewhat to his hard work, and my first-hand knowledge of his value. But the bigger picture is that it’s due to the collective efforts of us all. Should we continue with more emphasis on “how” we proceed, we might see the progress of the last 12 years double in the near future.

For more coverage of World Autism Awareness Day, follow this link.