Autism Speaks Official Blog

This post is by Lisa Goring, Autism Speaks’ director of family services. Lisa lives in Manhasset, New York with her husband Paul and two children, Lindsey and Andrew.

“Your child has autism.” 11 years ago this month, I heard those words, and it felt as if everything stood still. The pediatric neurologist kept on talking, but I honestly don’t remember a word that she said. Autism?

And so like many parents before me and after me, our journey began. I called early intervention; I called therapists; I went on websites (there weren’t that many 11 years ago) to help my son Andrew. I wasn’t even sure what I was asking for – what exactly are ABA, occupational therapy and speech therapy? I had a lot to learn, and I needed to learn quickly – this affected my child!

11 years later, I have learned quite a bit. As the director of family services at Autism Speaks, as well as being a parent of a child with autism, I know how critical those first few months after a diagnosis can be. I also know how lost and isolated some families can feel. And I am so proud that we, at Autism Speaks, are able to provide families with the 100 Day Kit.

In working on the 100 Day Kit we wanted to make sure that we received input from parents of children with autism as well as autism professionals. When we were putting together the advisory committee for the original 100 Day Kit, we consulted with professionals that are clinically strong, but also those that understand the needs of the families. Those that believe in children with autism, and all that they can achieve. We thought it was important to be able to provide newly diagnosed families with access to the work of these professionals through this kit.

We also knew how much newly diagnosed families could learn from other parents of children with autism. I was always so grateful to the parents of children with autism who I reached out to. They would share their time, experiences, knowledge and resources and truly understood the challenges. And so we knew it was important to get the perspective of parents of children with autism as we developed this kit. We made sure that we included information from our parent advisory committee. We asked them to let us know what was helpful when they first got the diagnosis. What did they wish that someone had told them? And so we took their input and incorporated that into the 100 Day Kit.

I am so appreciative of the professionals and the parents of children with autism that were able to contribute to this kit and even more proud that we are launching Version 2.0. This new version incorporates so many amazing suggestions and comments we have received since we first launched the original kit. It reflects, even more than the original, the great advice that parents “who have been there” have shared. Every 20 minutes, a child is diagnosed with autism. When families first get the diagnosis of autism, it can be difficult. Our hope is that the new 100 Day Kit will provide families with a greater sense of hope, with resources, and information that will help make those first few months just a little bit easier.