Home > Science > My Summer at Autism Speaks: A Science Intern’s Story

My Summer at Autism Speaks: A Science Intern’s Story

Post by Rosie Alig, Autism Speaks scientific affairs intern (Smith College) for the summer of 2011

Writing was my first love. Science was my second. And in my junior year of high school, I had a very special teacher—a four-year-old boy who inspired me to study the world of autism.

I’ve long felt frustrated by the discord between hard facts and tangible experience. My textbooks told me that people with autism were detached, that their most distinguishing features involved distaste for human contact. Meanwhile, the boy I babysat gave me huge hugs when I walked in the door and could not fall asleep without cuddling.

I also felt, and still feel, that those with autism and their families are being sold short in terms of access to “decoded” scientific information about the condition—at least beyond the grossly oversimplified basics.

My internship at Autism Speaks gave me the opportunity to channel this aggravation into productive work. My assigned project was to read follow up reports from completed studies funded by Autism Speaks, and to then translate the scientific mumbo jumbo into language you don’t need years of scientific study to understand.

Basically, I read researchers’ reports of what they accomplished and broke it down into basic sections like “goal” and “result.” The experience taught me a lot about not only autism, but the challenges and benefits of a large nonprofit organization and playing a productive role within it.
The first thing I noticed was the utter generosity of everyone involved. No matter how busy, the science team always made time for updating the interns and answering our questions. I believe this kindness is fundamental to their desire to make the work they do available and accessible to all need it.

My project, too, stems from this effort. Autism Speaks makes possible some amazing science—it just needs uncloaking from the scientific graphs and ten syllable words that can make it indecipherable to those outside the realm of scientific research.

Admittedly, my science background is not extensive enough to understand these reports without some help from Google! So in the process of familiarizing myself with “single nucleotide polymorphisms” and “eye tracker output,” I learned how to convey the importance of this information to the general public, including families of those with autism.

My project underscored just how vital information literacy is, and how hard organizations such as Autism Speaks must work to disseminate their educational resources. I think this effort is a significant and productive effort by Autism Speaks, and I am proud to have been a part of it.

Thanks to the Science Team at Autism Speaks, as well as all of you in the community who made this experience possible. Your contributions are invaluable, and I can assure you that they are being put to good use.

  1. Sarah
    September 8, 2011 at 1:31 pm

    Thank you for your hard work Ms. Alig!

    You must be one of the many backroom people I alluded to in an earlier post. :)
    http://blog.autismspeaks.org/2011/09/06/august-highlights-from-the-science-staff/

    Wishing you the very best in whatever career you pursue.

  2. Katie Wright
    September 8, 2011 at 3:48 pm

    Thanks for the work you did Rosie!

  3. Lynn RS
    September 8, 2011 at 9:07 pm

    Thank you. As a parent, I try every day to demystify this disorder and how it manifests
    itself in my son. The best advice I ever got from a parent was to read “autism” as “awetism”.
    And to be constantly open to learning new things with my child. It isn’t easy but it is easier if you can find those special moments.

  4. September 9, 2011 at 3:11 pm

    What a wonderful perspective on Autism Speaks – i had not thought of that aspect or that “side” before. I have a 20 year old with autism and one thing i have learned over the years is whatever report, diagnoosis, new fact or finding – it may or may not apply to your autistic child – everyone is SO different, not just autistic people. I sope with a Mom (of an autistic child – about 7yrs old) – for a purpose completely unrelated to autism, who was afraid to barely take a step with her child – unless the “step” was in some report, diagnosis or part of the special diet – thats sad to me. My point here is although research, information, papers, science, facts, eveidence, reports, etc is great – don’t get me wrong it’s GREAT – we stil cannot live and the autistic people can’t live by facts, figures, reports and research. Does that make sense? You can’t let the research pigeon-hole your child – just because your child may have autism, it doesn’t mean you’d have to follow every piece of research and Dr.’s direction to the letter. That’s NOT good. Did I do my research? Yes. My son was tested, we went to all the appropriate Dr’s and appts, I sought out what might be the best treatment method for my son and we moved forward smartly – mostly because I did not just do everything that everyone suggested. I also watched my son, “listened” to his needs on my own and did THAT too. One example is – we had a pyschologist suggest STRONGLY that whenever my son became a “bully” to me and/or others, as a teenager (he was about 6 at the time), that I could simply come back an get some medication for that! Are you kidding me? He was 6 then and already she “knew” that he’d be “a bully” and we’d ned medication for that? I decided early on that we would not be doing that. Did my son have a few rough moments as a teenager? Sure he did – what teen doesn’t talk back to their parent or grumble when they have to follow a direction…but that’s a normal teen, right? That’s not solely the autism. There is still confusion, the research is still going on and none of us should be “led to the water trough” without using our own sense of whats right for our own child. Thanks Rosie for sharing a great insight to Autism Speaks – I think they are awesome too, they help us autism families tremendously!! Good luck with your career, you’ll be great!

  5. Jessica
    September 10, 2011 at 8:54 am

    Thank you Rosie, for so many things! Most importantly, thank you for being a part of our son’s life in such a meaningful way, and for following you heart into this effort!

  6. Ileana Morales
    September 11, 2011 at 7:55 pm

    Thank you.It’s Great to know there are people like you in the world.Last week a group of teenagers were making fun of my 18 year old son.-He didn’t really understood what happened,(because of his lack of social skills).I was HURT< MAD< SAD….but then I read about Rosie…

  7. September 12, 2011 at 3:53 pm

    Go, Rosie! Thank you so much for your contribution. See you next year??

  8. Liz
    September 14, 2011 at 1:35 pm

    As you noted, the communication challenges surrounding autism extend far beyond those of people with a diagnosis. Your role in sharing science in lay terms is to be celebrated–and hopefully this is something you will continue as your future unfolds. Equally important is helping to frame ‘findings’ and ‘breakthroughs’ with respect to the potential impact on affected individuals. Thank you for altering the vocabulary, but also for bringing your connections to an individual with autism, and your heart, to your work. Kudos!

  1. No trackbacks yet.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: