What Is the Role of a Parent Advocate?
March 09, 2022
By: Shannon Rosa
It’s tricky to be a parent advocate in the autism community, especially if, like me, you are not autistic yourself. Autism is about autistic people, and that’s who should be leading autism advocacy efforts. But in the nearly two decades since my son was diagnosed, I’ve learned that I do have a role as an advocate: To learn and share and fight for the policies and knowledge needed for my son to live a good life as an autistic person.
Parents of autistic people simply can’t avoid being advocates. It is not reasonable to be passive when our loved ones need so much support, and when there are so many roadblocks to getting that support from educational, social, and medical networks that are supposed to provide it.
But to be the most effective advocates for our autistic children, I’ve learned that we must listen to what autistic people say about what they need and how they perceive the physical and social worlds, and apply the appropriate parts to our own children’s lives. We must look for—or encourage—the same autistic-informed approach in the many people who will be on our children’s teams throughout their lives, like teachers, therapists, direct support workers, and medical professionals.
Ideally, our autistic children would tell us exactly what they want and need themselves. But that is not always possible for children who are too young, who have communication disabilities, or who, like many autistic people, have trouble interpreting their own emotions (alexithymia) or interpreting their own body’s signals (interoception).
Sometimes, what our children need is not obvious or intuitive. For this reason, being their most effective advocate means learning from autistic people about autistic mindsets and experiences—insights that are rarely possible for people who aren’t autistic, regardless of how observant or empathetic they are.
The ways in which our autistic children react to and exist in the world can be very different from mainstream expectations about behavior. If we parents don’t have autistic insights into why our children act and react the way they do, our reflexive responses may be to expect our children to be able to do and cope the same way as non-autistic peers, which is often neither realistic or possible—and can often lead to avoidable meltdowns, anxiety, self-injury, or aggression.
I’ve learned that our autistic kids need us to be their advocates, to step in and create safe spaces for them if they get overwhelmed. Advocacy also includes sharing with other parents and caregivers (and even professionals) what our autistic loved ones need to cope, learn, and thrive—if those people haven’t learned yet. This is part of why I co-created Thinking Person’s Guide to Autism, which is an autism information resource and community.
I’m fairly sure I was always a loving mom to my son, but I wasn’t always the best advocate for him as an autistic person. To be effective advocates, we have to retain critical thinking skills while remaining empathetic and aware of the vast variety of experiences of both autistic people and their parents and caregivers. Becoming an effective advocate can take time. It certainly did for me. That is another part of why I advocate—to help other parents sidestep the mistakes I made, and start being the parent their autistic child needs sooner rather than later.
Trying to be a good advocate also means being aware of your own limitations. In addition to not being autistic, I am not an autism researcher or medical professional. I need to rely on and check in with those who are experts (many of whom are autistic). This is part of why I co-created AutINSAR, a periodic discussion between autistic people and autism researchers; why I am grateful for research efforts like the Participatory Autism Research Collective; and why I look to autism health care efforts like the AASPIRE Healthcare Toolkit for best practices.
I had to do a lot of hard unlearning about autism and disability after my son was diagnosed with autism. It took many years to understand that autism and disability do not automatically mean tragedy or misery. I thank autistic mentors for helping me learn what being my autistic son’s best advocate actually means and what he needs from me.
The three things I learned from autistic advocates that make the biggest difference as a parent advocate are:
1) Respect your child’s humanity. My son has the same capacity for joy, frustration, and love as anyone else. I will not tolerate him being treated as though he doesn’t matter or as though he matters less than non-autistic people.
2) Respect your child’s capability. Autistic children have developmental disabilities. That doesn’t mean they won’t ever learn to do things. In many ways, it means they will continue to learn things, though sometimes long after their peers do. My son surprises me every day; as his advocate, it is my duty to remind other people not to underestimate him.
3) Respect your child’s privacy. I will admit, I am a reformed, oversharing, mommy blogger. But autistic people taught me that not only is it demeaning my son to share personal details about his struggles publicly, it reinforces negative stereotypes about autism when parents only focus on their children’s most difficult moments. Instead, I have connected with understanding parents (many of whom are themselves autistic) so we can problem-solve (or grouse) in private.
My son is now an adult, and while he cheerfully self-advocates, he does not do public advocacy. And I don’t think being an advocate means speaking for him. Instead, my role is to share the best information I can find; connect with other parents and caregivers who are looking for best-practices information so I can help them avoid my own mistakes; and support autistic insights and writers and advocates who share autistic insights to make the world a better place for the entire autistic community.
Shannon Rosa is the senior editor of Thinking Person’s Guide to Autism, an autism information and advocacy resource and community. She lives in California with her family.