Written by Bethanie Milford, LCSW
Edited by Christina Thompson
Learning What “Autism Mom” Means
Over the past few months, while talking with some clinicians on Facebook about the experience of parenting an autistic person, I learned something about the term “autism mom.” I had seen the term before but assumed it was simply a reference to a parent of an autistic person, with no meaning beyond that. This time, I asked what they meant and realized that, in some parts of the autism community, it carries a negative meaning. It can describe a mother who makes her child’s autism primarily about her own suffering or identity, shares private details or videos of distress without protecting her child’s dignity, speaks over autistic people, assumes her child’s experience represents everyone, or presents her child as a burden and focuses on making them appear nonautistic.
Feeling the Need to Defend Myself
Learning this upset me and immediately made me feel I had to defend myself and explain that I was not “one of those mothers.” Then I paused and wondered: Are mothers being placed in this category before anyone knows their story, expected to prove otherwise before being considered an exception? I understand the concerns about these behaviors, but I also wonder what happens when a label meant to challenge harm makes mothers feel that speaking honestly about their experiences is enough to put them under suspicion.
Showing Both Her Distress and Its Impact on Me
I have shared photos and videos to help people understand the fuller experience of caregiving and to advocate for support. What I have found is that, regardless of how I explain the context, sharing these experiences often feels unacceptable. Although domestic violence is a very different situation, I find myself thinking about how photographs of injuries can evoke empathy for the person harmed and anger toward the person who caused them. When I share photographs of my own injuries, I am trying to communicate something different: Imagine how overwhelmed and dysregulated my autistic child must be when she cannot communicate what is happening inside her and her distress manifests as physical aggression. I am trying to show both her distress and its impact on me. Yet I worry that people interpret those images only through a victim and perpetrator lens, assuming I am portraying my daughter as an abuser. How do we make room to recognize that a caregiver has been hurt while also recognizing that the autistic person needs understanding, protection, and support?
Hoping for Meaningful Discussion
What often happens in these conversations is that I receive no response, Some Level 1 autistic people challenge me, or people respond with a caring or heart emoji. While I appreciate the care behind those reactions, what I am seeking is meaningful discussion about how to support families like mine so we can sustain caregiving without sacrificing our health, facing financial instability, or becoming homeless. I want these experiences to lead to conversations about practical support that protects both the autistic person and the people caring for them.
Different Needs Within the Same Community
Being part of a family that supports a Level 3 autistic person can feel like living in a bubble. Society often does not understand your experience, and sometimes people within your own autism community do not understand it either, especially if they have not lived with full support needs. Conversations can become a battle over who needs more, when what we need to acknowledge is that there can be significant differences between Level 1 and Level 3 experiences. All autistic people have needs, but those needs are not the same. We need room to discuss those differences, listen to one another, and turn those conversations into support that reflects each person’s and family’s circumstances.
Finding a Way Forward
I keep trying to find a way forward, but sometimes I feel like I am grasping at straws. When a conversation begins with someone already holding strong opinions about caregivers, I wonder how I can get them to hear me. I felt I had something of a breakthrough the other day during a conversation with another clinician who provides therapy within the autism community. She helped me consider how someone’s perspective can move like a pendulum. A person may initially recognize the challenges of parenting an autistic person, but if they later discover they are autistic themselves, they may begin revisiting their own experiences through a different lens. That could include recognizing times when their parents misunderstood them or treated them poorly. Their advocacy may then shift toward protecting autistic voices and challenging parent perspectives.
That helped me understand how someone might arrive at that position, even when it feels painful to be on the receiving end of assumptions about caregivers. I still believe we have a ways to go in recognizing that both autistic people and caregivers need support. Their needs may differ, but neither person’s humanity or right to support should carry less weight. My hope is that, as we make room to understand both experiences, compassion can grow and we can work together toward support that helps the whole family.
