Do Something About It

The rate of autism diagnosis in children has been increasing steadily since 1990, leaving more parents with the challenge of figuring out how to help their children with autism achieve their greatest potential in a society that is full of confusing and often contradictory information about autism. While public knowledge of autism has increased over the past 10 to 20 years, most communities in the United States continue to have needs that outweigh the available resources. That is certainly true for my employer, the Rochester Center for Autism, which has a nine-month waiting list for intensive behavioral therapy.

Getting support and resources for a child with autism in a timely manner is nearly an impossible challenge for parents. Through my work, I have repeatedly heard from parents that when children are diagnosed with autism, families are given very little information about what to do next, how to connect with services, and what to expect when their child starts school, enters adolescence, and eventually becomes a young adult. While raising a child with special needs is hard, navigating a system that is geared toward typically developing children is even harder.

One family in Rochester told me that they had traveled an hour to La Crosse, Wis., to attend a 12-week parent training and support program that begins at the time of the child’s diagnosis. Upon hearing about this, I wondered why we didn’t have such a program in Rochester.

Lily Tomlin once said, “I always wondered why somebody doesn’t do something about that. Then I realized I was somebody.” In the same spirit that led me to become active with student government at Grinnell, I decided that instead of asking why somebody doesn’t do something about it, I would just go ahead and do it. So I set out to learn more about the parent training and support program in La Crosse, so I could establish something similar in Rochester.

I felt strongly that our parent training program should be a partnership between multiple community organizations, and should be free of charge for parents. This was in late 2013, the same year I had convened a group of community organizations to share ideas and collaborate on community projects relating to autism. This informal group, called the Southeastern Minnesota Autism Alliance, included representatives from more than a dozen public and private agencies including therapists, social workers, educators, advocates, and parents. So I brought the idea of starting a new 12-week parent training and support program to our autism alliance and asked them for help.

An autism specialist from our school district agreed to help plan and facilitate the parent groups with me. The executive director of a local nonprofit autism awareness organization, the RT Autism Awareness Foundation, suggested I pitch a budget to its board of directors. So that is what I did. The foundation was able to raise funds and commit to fully supporting the first year of the program.

Our first 12-week session of parent training and support, which is to be called RT Autism CARES (Community Autism Resources Education and Support), started in September 2015. We hope to serve 12 to 15 families in the first year, free of charge. The program will be a collaboration between the agency I work for and the RT Autism Awareness Foundation. Parents will attend 12 weekly sessions, where we will provide them with an orientation to their child’s diagnosis, teach them how to effectively access community services, and provide information on how to implement evidence-based behavioral and communication skills training techniques with their child. Parents will also develop a support system made up of the four to five other families who will go through the program with them. If nothing else, they will not be alone in facing the challenge of raising a child with an autism spectrum disorder.

As I continue my career as a social worker, I still just want to help people. Sometimes that simply means listening and asking people what they need, seeing who wants to help, and just going out there and doing it!