When a child is diagnosed with autism, parents need good information and help navigating the options for treatment and intervention. Unfortunately, as yet there’s no standard protocol for helping parents deal with this news. Instead, we have the internet, with no lack of advice for dealing with an autistic child. The problem is, there’s no way for the average parent to filter out the useless, silly or potentially dangerous ideas from the evidence-based advice. Now a study being done in Colorado will attempt to identify the best way to help these parents.
The Colorado Parent Mentoring Program is a study sponsored by JFK Partners and the University of Colorado Medical School. The study is investigating the impact of mentoring for parents of newly diagnosed autistic children. Parents are paired with trained mentors, who are themselves parents of autistic children. The mentors provide guidance, support and advice on navigating the myriad decisions and choices on treatment, intervention and family life.
I recently spoke with Dr. Eric Moody, an assistant professor on the Anschutz Medical Campus and Project Coordinator for this study. He emphasized that this study is not about which autism treatments work. Rather this study examines what types of mentoring help parents and families cope with the situation. Colorado has no standard definition for intervention. Clinicians can make the diagnosis, but don’t have time to help parents understand the options and develop a strategy. Worse, school districts all set their own standards for intervention for autistic students. Mentors, who have already dealt with the situation themselves, are better able to help these parents. As Dr. Moody notes, these parents have been through the system themselves. They can educate parents about the current realities of treatment and offer emotional support that says “you are not alone”.
In addition to the mentors, study participants will meet with autism experts who help the parents create an action plan for their child, based on knowledge of effective treatment. Dr. Moody points out that reducing the time from diagnosis to treatment improves the outcome. Parents of children between 2 and 8 years old who were recently diagnosed with autism are eligible. Prospective mentors must have spent at least 2 years working with their own autistic child. Mentor training is provided.
For more information about participating in this study, contact:
Dr. Eric Moody