Did Autism Speak?

Autism Awareness Month, or as many in the autism community like to call it, Autism Action Month, is ending today. For some of us — we are happy to see it go, as the response to autism and the awareness of what this developmental and neurological disability is nowhere near where it should be.

Some in the autism community, including self-advocates with autism, look at the increasing numbers (1-50 school age children have autism spectrum disorder, or ASD, according to the latest reports from the Centers for Disease Control) and say the time for awareness is done. It’s time for action.

But the fact remains that with no national health plan to address the autism crisis, with varying opinions from the medical community on how to treat ASD, with the vast spectrum (some good, some bad) of educational services for children with autism in school districts around the country, with a general public still largely unaware how to react or respond to those with autism, awareness is still very much needed. But what should this awareness be? What should we be teaching the public? How should national autism organizations really handle their awareness campaigns?

My friend Harshita Mahajan attended an autism awareness event with her teenage son, who has ASD, where they had a horrible experience. That it happened at an autism awareness event is what grieved her, and us as her friends, the most. But she didn’t stay silent. She spoke up. And this is what happened.

The choice a lot of us face every day is should we make the effort to voice our grievances against an entrenched entity even when we know that very little change is possible, or should we conserve our energy and focus on the things that we know will make a difference in our children, their education and their health.

I was faced with this dilemma a few weeks back when my son faced the brunt of public ignorance about autism — ironically at an autism awareness event. Click here to read the story.

At the time I just wanted to just crawl into a hole and lick my wounds and heal, but after a few hours it became clear to me that something WRONG had happened, and I needed to do something about it; not because it would make a difference, but because I would know that I had at least made the effort to speak up about something that effects my son every day and will continue to do so for the rest of his life.

So after some preliminary investigation, I managed to get the personal email addresses for some of the people on the board of Autism Speaks, the organization that sponsored the event where my son and I left early after he exhibited autism behaviors that upset another family. I wrote to them describing the whole incident and described in detail exactly how their organization had failed me. (You can read my letter here.) I had no expectations at all from this whole process except to feel better with myself.

Imagine my astonishment when I quickly received a sympathetic reply from the board member I had written to. He completely empathized with us and assured me that he would be forwarding my email to the president and to the founders of Autism Speaks.

I was shocked that my voice had been heard, but an even greater surprise lay in store for me. The very next day I received an email from the president of the organization, Liz Feld. She wanted to discuss the incident and also take my feedback on ways they could do things better.

I quickly got in touch with my ASD (autism spectrum disorder) parent  friends in the virtual world  and took their feedback on steps that needed to be taken to improve autism awareness in the United States, especially using the resources of this organization.

I made an appointment with Liz, and then when we had the opportunity  to finally speak I was able to voice the suggestions that I had collected from my online community, including discussions on doing a short informative audiovisuals at events,  public service infomercials on TV and basically managing the media to promote authentic autism knowledge for the public at large. She appeared extremely positive about every suggestion I made, and we finished our talk by my assuring her that I would make a synopsis of our telephonic discussions and email it to her.

I sent my email, hoping for a reply or an acknowledgement.

The reply never came and the realization dawned on me that perhaps this is where the matter was fated to end. I felt a little let down, however in the final analysis I did have the satisfaction of knowing that our message had reached the highest levels in this organization.

And then two days back after dinner, I was busy doing something on my laptop with the backdrop of Anderson Cooper on CNN playing in the next room. And then there was a commercial break. And then suddenly I heard someone talking about autism — it was an infomercial, not asking for anything, just informing the public about autism and ending with the epidemiological statistics.

Did Autism speak out? Was it me? I don’t know.

All I know is that I will never ever think of NOT speaking out again. The effort is ALWAYS worth it.

–Harshita Mahajan