Peer-to-Peer Support for Families with Autistic Children

Parent Leadership in Autism Network (PLAN) is an initiative of the Boston Medical Center Autism Program. Its purpose is to create peer support for parents in the BMC community who have children diagnosed with autism. “There is tremendous value in parents connecting with one another,” explains Shari King, program director of the Autism Program at BMC. “With PLAN, our parents have an opportunity to gather for guidance, help and empowerment.”

When the BMC Autism Program launched PLAN five years ago, they wanted to distinguish themselves from other peer mentoring groups. They decided to seek parent leaders from the community, train them on how to properly support matched families based on specific needs and foster their leadership in a variety of ways. Training involves everything from psycho-educational coaching to crisis intervention training and learning how to establish boundaries.

“Our leaders could be assisting a parent on how to best advocate for school services, how to manage a child’s picky eating habits or helping a parent deal with siblings who might be trying to find their identity. Our parents are an extraordinary resource; they have walked a million miles in the journey of their child’s diagnosis and express great satisfaction in being able to give to others,” says King.

Parent leaders have represented the program at statewide conferences such as the Massachusetts Early Intervention Conference (MEIC), the Federation of Children with Special Needs and MA Family Voices. This past year, they launched a podcast called, “Live from the Spectrum” (available on ITunes and Google Play). They have also partnered extensively with the BMC Autism Program’s Autism Friendly Initiative, which aims to improve the hospital experience for all patients with autism spectrum disorder.

Today, the program makes approximately 100 parent matches a year, and has a network of approximately 30 parent leaders, representing more than a dozen cultures and languages. Those numbers only continue to grow, and they hope to expand their program to train more parent leaders and serve more parents from the community. “We only see the need growing,” concludes King. “It is important for families to realize they’re not alone, benefit from the strength of these relationships and recognize how far they have come.”

As one parent leader points out: “Autism does not come with instructions, and I was constantly wondering if I was doing things right. I feel that the more I am empowered, the more I can empower other people because of PLAN. This group is changing the way autism is perceived and how it is accepted and advocated for. I would recommend it to all parents.”