We were part of Insider Pages, and we had just created DoctorFinder. With DoctorFinder we had a simple goal: allow people to find good doctors who were local and that take your insurance. It sounds simple, but it just wasn’t available, and people loved it. They were looking at more than ten pages per visit; they were really using the search and getting what they asked for. In my personal life, I had a nephew who was diagnosed with autism, and all of this was happening at the same time we were having our children. And with one in 70 boys being diagnosed, some of your friends are going to be a part of that. For us, our best friend’s child, was one and half when we started and got diagnosed at age three. So that’s when I became more familiar with the complexities, rather than the heterogeneity of autism. They say if you meet 100 kids with autism, you’ve met 100 kids with autism. So that was almost two years ago, when we began working on the MyAutismTeam idea. For parents there are just so many things to do after that diagnosis, so many things to look into. Of course there are so many unknowns, if we can remove one of the barriers for parents, which is to get good information, we thought, “let’s do it.” And we can do this; this is tractable. If we can do this right it would be a huge thing for the community. We thought, “Let’s give all of this information a home.” No one else is offering local search connecting people with good local providers.
So what is the community like now?
We started in April with 30 'alpha users', and six weeks into it we were at 1273 (editors note: I got a note over the weekend that they are now over 2000 users). By July we had over 9700 Facebook fans. More than a third of our visitors have entered teams, and those teams don't just have doctors, there are swim teachers and summer camps and barbers and music classes, all of the resources that make up a team. Users are also beginning to use the comments area to create more community. Some of it is “my day is going great”, but other people have posted “we’re really having problems”, and parents across the country respond so quickly with help, advice or support. We have users in in every state, and the breakdown is well-distributed with 16% of users are in California, then Florida, Pennsylvania, and New York, certainly in the big metropolitan areas, but in the smaller communities as well.
We have had a steady, growing population, and soon we will get to that critical tipping point where the information will be even more specific and helpful. We’re already finding pockets where with even 20 parents in a certain region it creates an active community. And if you can get that kind of use with 1200 users, then with 10,000 it is going to be an incredibly useful resource. I think there is enough passion in this community to get to 10,000 and then 100,000.
Are there adults with autism on the site? Our community often has trouble bridging the gap between child and adult, caretaker and self-advocate.
We want to be respectful and get it right. Currently it is focused on serving parents and caretakers. We wanted to start somewhere, and said, “Let’s just get this right for parents.” But we already have a large population of users who are parents of children with autism, but their children are older, in their late teens or twenties users like (TPGA contributor) Laura Shumaker, so we are getting that broad base. And the people on those teams can help show other parents, with younger children, some of the things they will need to think about. I think that is going to be one of the biggest benefits of the site, you need to think about some of those services and providers ahead of time. And while we haven’t tailor-made it, adults with autism can absolutely utilize the site to find doctors and services that are more autism-friendly, and contribute their own reviews of providers and services.
What are some of the success stories you’ve seen so far?
We have had a number of great stories from the beginning, and watching the ways people use the application helps us make the functionality better, Just after we launched, we had a woman in the (San Francisco) North bay who posted that she had found a saxophone instructor for her son, which was so great. Then a week later she posted another note that the teacher had told her that her son was “unteachable.” Within a very short amount of time we had people offering suggestions and we were able to change the functionality of the website so that members can contact each other via the site. And we had all of these local people offering suggestions, and people from farther away offering support.
With more and more users, we’re hoping it will be the easiest way to find a resource. You have a great music teacher and you put that person on your team, and the next person can put in some key words and maybe they can get 10 instructors in a 50 mile radius of their home. We already have theAutism Speaks database with 30,000 resources, and the entire Parents Helping Parents and Easter Seals databases as well. Right now you can put in a search for a psychiatrist, or an occupational therapist and get all of them in your area, and you are seeing those providers prioritized, with the businesses and providers towards the top that have been marked as “autism Yes!”
What’s next for the MyAutismTeam site?
A mobile app is blazingly obvious. We know you are on the go constantly. One of the times you might be able to share opinions and information is when you are in the waiting room. Maybe you check in, add the provider to your team, jot down a note. You are also creating your own record of the appointments you’ve been to.
So many parents have collected information about the doctors they’ve seen. I am in awe at the work these parents have done. It’s really amazing, the body of work so many of you have accomplished. It is a full time job, which requires exceptional expertise. We have built this infrastructure, maybe this is a place to express that achievement, sharing all of that information with other families. And some of this becomes really actionable. This summer for example, it’s not all idyllic finding things to do, so what places did you go to with your children? Blog about that children’s theater, then add it to your team. At the end of it, if you’ve done something that worked, then maybe next summer, wouldn’t it be great if we had a comprehensive national directory to make a summer plan? Have a great provider? Add it. A great barber? Add it. Don’t worry if it’s not a doctor, add whomever is on your team. Then it can be a repository of all of that information, and next summer you do not have to reinvent the wheel. We can have all of that information on MyAutismTeam.
Create your own profile with your team, and add reviews so people in your area can benefit from your experience. You can find TPGA editor, Jennifer's team here: http://www.myautismteam.com/users/JenniferBydeMyers/team