Autistic people have worked hard to have a place in the conversation about themselves—but even with all that progress, too often their voices are left out of parenting discussions. In an attempt to help change that, I put out a call on social media and four moms—Carol Greenburg, Melody Latimer, Ally Grace, and Carly Jones (aka the British actress and activist Olley Edwards)—responded. All of these moms have one or more autistic children, all of them received autism diagnoses as adults, and all of them had a lot to say about their experiences.
What challenges do you face as an autistic parent?
The four moms' challenges ranged from keeping up with household work, sensory overstimulation, competing needs (one mom's son plants himself in the middle of a busy, overwhelming sensory environment while her impulse is to retreat, for example), and most mentioned how hard it was to deal with the stigma surrounding autism.
Ally Grace mom to four children who have autism diagnoses and whose partner identifies as autistic, really opened up about this stigma:
"The main challenges I face is having been treated as a damaged person and having grown up believing something was wrong with me. Of course, I know now that there is, and was, nothing wrong with me, but a lot of lingering thoughts make me feel faulty when I act in autistic ways. People believing me incompetent or emotionally lacking is dangerous in the sense that I could be assumed incapable of being a parent. And so, it feels very scary sometimes being an autistic parent, wondering whether one day my parenting will be seriously questioned due to discrimination and misunderstanding."
What are some of the ways that being autistic helps you parent?
Carly Jones, who has three daughters, two on the spectrum, says:
"Being autistic has indirectly helped me in many ways as a parent. For example, my need for little sleep has ensured I can cope with the nighttime duty much better. Also, my ability to hyperfocus is helpful as my daughters are one of my hyoperfocuses! I have much less desire to have evenings out or go to parties."
Carol Greenburg, mom to a 13-year-old son on the spectrum, also notes:
"I think I'm more likely to 'get it' than a non-autistic parent. My son and I have different experiences of the world, but I do know exactly how it feels to be penalized for something like violating a social convention I don't understand. I also can serve as a role model in a general and in a specific way. My son and I have always been and will always be autistic. Even if I bought into all the clamor for 'a cure,' which I emphatically do not, that's not going to happen in either of our lifetimes. So, not only does my son see me as an autistic comfortable in my own skin generally, but he also watches as I model various coping mechanisms and self-advocacy techniques."
There are a lot of negative things written about autistic parents—how can we change that conversation?
Melody Latimer, mom to three kids, two of whom are autistic, says:
"I think more needs to be done to show how autistic parents actually parent. Not just anecdotal stories, but actually do some case studies on families. That just hasn't happened. Since the majority of actual literature out there says we're innately negligent, that is what services providers are going to perpetuate. The other thing I would love is for more autistic parents to come out to tell their story. We're kind of scattered to the wind. There are a few places here and there where you can find other autistic parents, but those places are usually well hidden for fear of discrimination. I feel like there should be more safe places for autistic parents, whether in local communities or online."
What do you want other parents to know about your family, yourself, or being an autistic parent?
Ally: "I would love for other parents to question the common belief that being autistic means an inherent 'something went wrong,' or 'something is wrong.'"
Carly (Olley): "I would like other parents to know that autism is different, but it's not wrong. We just have different ways and different priorities but we are trying our best just like you."
Carol: "The obviousness of autism does not directly translate into an individual autistics' level of need. My son's autism is pretty obvious to anyone who has had any contact with autistics. Mine is largely invisible, which is part of why I wasn't diagnosed until middle-age and why I've had no access to services I needed and still need."
Melody: "I'm a parent much like any other. I'm trying to parent my kids to the best of my ability. Ability and energy are a constant struggle. I put as much as I can into taking care of my children first, followed by taking care of myself, and then finally taking care of everything else. My children's' care and safety are the most important things to me."
This is really just the tip of the iceberg of the excellent conversations I had with these moms, but it highlights why we must keep including autistic parents in parenting conversations. Their insights are crucial for neurotypical parents (like myself) who are raising autistic kids, and their voices must be heard so we can continue to combat stigma and discrimination.