Why I am supporting Autism Research

The Canonical Community Team is running a week long charity fundraising drive, capped by a 24-hour live work hangout.  We all chose a different charity, and will be promoting it and encouraging donations during the week.  I chose to support the Autism Research Trust, and wanted to share a little bit about why.

Those in the open source community, or who are computer scientists, engineers or programmers, will be no strangers to Autism. Autism, and it’s associated spectrum, affect 1 out of every 88 children according to a recent study. In our geek community, the number is likely even higher than that.

Many of you may notice my blog’s banner, or read the post from when I put it up. When my first child was 2 years old, he was diagnosed with something called PDD-NOS (Pervasive Developmental Disorder, not otherwise specified), which is basically the catch-all “we don’t really know what’s wrong” category in the Autism spectrum. We were told this by a neurologist who then left the room without explaining what it was, what it would mean for our son, or what we were supposed to do about it. It was scary as hell.

What made things worse is that there is very little that anybody actually knows about Autism. Nobody knows what it actually is, or what causes it. There is no known cure or medicine to treat it. Our son needed our help, and we literally didn’t know how to give it. When he turned 3 years old he could speak only a handful of words. He was smart though, he seemed to understand everything, but we couldn’t communicate with him, or him with us. It was extremely frustrating for everyone.

The only thing that’s been proven to help children with Autism is early intervention. We were lucky, he was diagnosed at a much younger age than most kids. We found local speech and occupational therapy centers, and for over a year he went to these 3-4 times a week. Local organizations like Autism Speaks and the Central Florida Autism Institute helped us find what worked for him, because every child is different.

Early intervention has given our son his future back.  He still struggles with the effects of Autism, it doesn’t ever go away, but he’s learned how to work around it, and we’ve learned how to work around it.  That is why I have chosen Autism research as my charity for the Community Team 24-hour marathon, because there are still millions of children who need this intervention, and millions of parents struggling to understand how to help them.  And every dollar, pound or euro you give is likely to change somebody’s life.

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9 Responses to Why I am supporting Autism Research

  1. Hi, Michael! My husband forwarded this article to me. After reading it, I just had to take a moment to say thank you for supporting such a wonderful cause! My husband and I have twin daughters that both have Asperger’s syndrome, another of the many facets of the autism spectrum. Autism affects our lives on a daily basis, so much so that I began a blog of my own earlier this year to help spread awareness and understanding. People really usually know very little about what the word autism means, and I wanted my girls to be understood– a feeling to which I am sure you can relate. I wish you well with your son, and once again, thank you for supporting a cause that will benefit our children and so many others like them.

  2. Amelia says:

    Autism Speaks does not speak for autistics. See here for an example.

    Autists do not want to be cured. We are not broken.

    • Michael Hall says:

      I understand that there’s some disagreement and discontent with Autism Speaks, but they have helped me and my family personally when we were struggling to understand what was happening and what we needed to do.

      • kevix says:

        I have no doubt that the individual volunteers are being very helpful. No one can argue against people helping you. But their group has very different views that are not helpful to Autistics. I wish they would listen but their vast power and resources make them no match for other groups. Misinformation is wrong, no matter how loud it is.

      • Autism Speaks also helped me and my family understand what was happening to our son. He’s barely 22 months old, and 2 days ago he was diagnosed with Autism. We’re optimistic that early intervention will help him develop all of his talents and achieve his goals one day. Thank you for sharing your support of autism research. Our family will be doing the same.

    • Michael Hall says:

      I’d also like to point out that I’m not raising money for Autism Speaks, I’m raising it for a group called the Autism Research Trust, which funds studies of Autism out of Cambridge University.

  3. kevix says:

    I realize you have a child with autism and you are trying to help him the best way you know how but please consider reading about how others view this condition, not as a horrible disease to be cure, like Cancer, but as a genetic, neurological difference that primarily affect the brain. And that Autistics are varied on a spectrum. Please vist this[0] website so that you don’t continue to view your child as a defective human, and not the unique wonder being he is. The older posts are very good to explain all the good, evidence-based things you should know about helping your son. Autism is not easy, no matter what part of the spectrum you might be on. I’m involed with Grasp.org.
    -K
    [0] http://www.thinkingautismguide.com/

    • Michael Hall says:

      I have never, ever thought my son was defective. He is a wonderful, amazing child. But not because of his Autism.

      • lily21 says:

        It puzzles me why Mr Hall is been given such a hard time when in fact he is supporting the rearch into Autism.
        Ive work with many families and gracious young children with PDD and ASD for over 15yrs and who develop into Talented individuals.
        Without research we would not know what works with anything in our lives. Hmm basic psychology.

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