What happens when parents first hear that their child has autism? As a teacher, I once sat across the table from a mother and father when they first heard that word. Tears flowed when these parents were told that it was just possible that their child had autism.
There are parents who have said that they first experienced grief. That grief can be overwhelming and paralyzing. Recently I have been talking with professionals at various local nonprofits that support families of children and adults on the spectrum. These people can advise parents on services and programming available not only at their own respective organizations but at other organizations in the St. Louis metropolitan area. The organizations I contacted include the following: Easter Seals Midwest, Judevine Center for Autism, Missouri Families for Effective Autism Treatment (Mo-Feat), and St. Louis Arc.
Here are some recommendations these professionals made for parents of children recently diagnosed with autism.
1. Find support from other families, especially those who might have been navigating the system for just a few years.
2. Begin accurate and complete record keeping. Develop a system that allows you to record all conversations regarding your child. Maintain files of all paperwork you receive.
3. Refer to the list of resources provided by the autism clinic where your child was diagnosed. Begin by contacting one or more of those resources.
4. Contact a local nonprofit that provides supports for individuals with autism. Talk to someone there. These people can point you in the best direction for the first step, and they are willing to talk to you again for the next step and the one after that. I found that none of these organizations are in competition with each other. They all are willing to help.
5. Check out the downloadable kit for the first 100 days available through Autism Speaks (https://www.autismspeaks.org/tool-kit/100-day-kit-young-children). The first half of the packet contains useful background information that might be overwhelming at first. The week by week to-do list that begins on page 56 might be a good place to start. To provide structure to your investigation into services, there are lists of questions to ask providers. These begin on page 64 and are followed by some log sheets to help with organization.
If you have had experience in navigating the system to find programs and support for children with autism, what other thoughts or experiences have you had? What can you recommend families do first?