Valerie Paradiz http://www.valerieparadiz.com

United Nations Briefing

Elijah and I were honored to join the Autism Society of America and other friends from the community at the United Nations last week to celebrate World Autism Awareness Day. It was a truly inspiring session, meant to inform NGOs of some of the most pressing issues facing families, professionals, educators and individuals on the spectrum today and to share our vision for a global autism community.

We would like to share our contributions to the panel discussion on that day. Fellow panelists included Lee Grossman, President and CEO of the Autism Society of America, Suzanne and Bob Wright, co-founders of Autism Speaks and Dr. Edward Trevathan, Director of the Centers for Disease Control and Prevention.

Val's Speech, "Making the Invisible Visible"

It takes a lot to make the invisible visible. I am an individual diagnosed with Asperger’s syndrome, and most people I meet wouldn’t believe me if I told them, “I’m autistic.” This is a type of invisibility.

I’m also Elijah’s mother, and so I have witnessed his invisibility in our culture, as so many other families have who tirelessly seek support for their children, sometimes delaying their careers or not working at all, or spending every penny they manage to save on interventions that our health care and school systems have not supplied. This, too, is a type of invisibility.

I have been an educator for over 20 years. I assist schools and organizations in designing programs for children with autism. In these realms, teachers and therapists are going unseen and unrecognized every day for their daunting efforts to support children without adequate training. These professionals share a piece of the invisibility of autism.

Finally, I have met many children and adults on the autism spectrum who are invisible to themselves. They do not know explicitly of their autism, and so they are missing important keys to self-awareness. No one knows the degree to which individuals with autism are self-aware. Our very heterogeneity makes such assessments difficult. If you’d like to view us as moving through the stages of a civil rights movement, you will see a similar line of development in other groups, disabled or not, who emerged as ever more autonomous and self-aware with time. I think of the women’s movement across the globe as a good comparative example. And so, I like to practice the fine art of not making too many assumptions about individuals with autism and what they can and cannot do. Instead, I prefer making more visible what I know to be invisible among us and our families and those who support us through education, medicine, and therapy.

To me it seems a simple equation is at work here. The more visible our struggles, the better our lives become. This requires a shared effort across the autism community and around the world. We must share what we know of the unseen with one another, trust our different perspectives, and follow them as cues for how we can build a better future.

If I were to create a wish list based on what I see, it would read something like this:

  • Bring curricula promoting self-acceptance and self-awareness into schools and organizations and train staff to help individuals with autism understand and advocate for their sensory and social needs, develop their deep and focused interests, and celebrate their strengths across their lifespan.
  • Fund schools and service organizations so they can faithfully carry out federal mandates and are no longer forced to view children and adults with autism and the professionals who support them as line items in a budget. Do this, so that families and schools are no longer pitted against one another as enemies rather than being collaborators.
  • Include adults on the autism spectrum in all our thinking about autism. Bring them out of a most profound invisibility, in a culture that sees autism primarily as a childhood condition.

And one final pocket of invisibility: Conduct more research and develop programming specifically for women and girls, as a matter of course, in all our work on autism. We’re different, as my son could tell you.

Elijah's Speech, "I'm in Love"

I’m in love, for the very first time in my life. I can tell you, it feels really nice. She’s a very special girl. It’s been a long road getting to this place. I’m seventeen years old, and I have autism.

If I could rewind the videotape of my life, I would show you how it was when I was three years old, having seizures that no medication could put a stop to. I would show you how I didn’t begin speaking full sentences until I was seven years old. And I would show you how much I wanted to participate in what the world had to offer, but my painful sensitivity to sounds and voices made it nearly impossible for me join in.

I’d probably have to show you—so you’d understand this journey—how awkward I was socially, how friendless I was, to the point that I became seriously depressed. I’d also want to show you the amazing things about being autistic, like deep interests and the time I discovered the world of comedy. With a lot of support from my mom, I found the gumption to get on stage. This opened so many doors: to friendships, confidence, wisdom, and well, something I think every autistic person needs: love.

Today I perform all around the country, raising awareness and helping all of us to lighten up a bit and have a few laughs. I’m proud to be autistic. I’m forever grateful to my mom, my family, my teachers, my mentors, my therapists and all the organizations and people out there who proved to me what the Beatles say: “The love you take is equal to the love you make.” My greatest wish is for autistic people across the globe to have as much support and love as I’ve received in my life so far.

—Valerie Paradiz
Entered 108 days ago