Written by Bethanie Milford, LCSW
Edited by Christina Thompson
The Lessons We Never Chose
Some of the hardest lessons I have learned have been grueling and emotionally exhausting. I can now recognize how they have shaped me as a person, even as I wish my daughter and our family had been spared so much pain.
Being present through my daughter’s meltdowns and intense dysregulation never felt like a choice. She needed us, and her father and I wanted to support her ourselves. We tried everything we knew. We sat with her, working to appear calm while feeling terrified and crumbling inside. I remember sitting in front of our apartment door, keeping it closed as she pulled at it repeatedly, hoping that in just one more minute, the cycle would end and she would find some relief.
The Fear Behind Closed Doors
We lived in fear. Fear for her safety, fear of what might happen next, and fear that we would not be able to get the help she needed. Alongside that fear was the pain of knowing that she was struggling, too.
The more I have come to understand her experiences, the more I recognize that what looked frightening on the outside may also have been deeply frightening for her. Her distress was not necessarily about me or her father, but about what she was experiencing within her own body. With limited conversational language, she could not always identify or tell us what she felt.
Tangled Wires
When I think about her experience of autism, trauma, and fear, I picture tangled wires. Recognizing danger, making sense of memories, and feeling safe in the present could seem difficult to untangle. During overwhelming moments, words, decisions, and responses could become difficult to access.
“Tangled wires” is a metaphor for how her experience appeared to me, rather than a literal explanation of her brain. It reminds me that what we saw on the outside offered only a glimpse of what she may have been experiencing within.
Grief, Patience, and Purpose
Sitting through countless episodes forced me to slow down and watch the world move around us. Our family missed out. We grieved experiences we had hoped to share. AND we found purpose in helping others understand our daughter’s needs and recognize her distress without turning her into the villain of the story.
Patience was a painful lesson as we watched our child struggle and could not make it stop.
Supporting her meant noticing the smallest details and how they might affect her. It also meant accepting that the moment a meltdown began did not necessarily reveal what had brought it on. Sometimes we wondered whether a memory from months or years earlier had resurfaced. She would begin repeating, “Want. . .” and we would scramble to understand what she was asking for, what experience she might be remembering, and what could help. We could not always know.
“Why Don’t You Try This?”
We were often asked, “Why don’t you use AAC, picture cues, or other visual aids?”
We had. We had tried these supports repeatedly, along with a list of approaches that extended far beyond what someone might think to suggest. Every autistic person is different. A support that helps one person may not meet another person’s needs, or be accessible to them during intense distress.
For our daughter, an unpredictable thought spiral could lead to an urgent need for a particular idea or expectation to be fulfilled. In those moments, she seemed unable to process why it could not happen or recognize that running out of our home put her in danger.
AAC could support communication, but having a device available did not mean she could reliably use it during intense fear. She still had to process what was happening, locate the words or symbols she needed, and make a selection. Those steps could become difficult or temporarily inaccessible when she was overwhelmed.
For her, these episodes could last an hour or longer. Throughout that time, she needed support to feel safe, whether or not she could explain what was happening.
The constant “Why don’t you try this?” was exhausting when we had tried it, over and over. We understood that suggestions often came from a desire to help. But we also needed people to listen, believe what we described, and recognize the limits of the answers they could offer.
Telling the Truth About Our Experience
Despite our efforts to explain, I know some people may always see us as parents villainizing our autistic child. What I am trying to illuminate is the distress she experienced and the fear we lived with behind closed doors. We were a family desperately asking for help for someone we loved.
I sometimes wonder whether I write our story to document a truth the world struggles to acknowledge: profound distress can persist despite love, acceptance, communication supports, and years of effort. Sometimes there are no clear answers. We needed people, including doctors, who were willing to say that aloud and remain beside us as we kept searching.
A Legacy for Future Generations
I also wonder whether my writings will become part of our legacy. Whether future generations will read them and better understand what families like ours lived through, what our loved ones needed, and where support fell short.
My hope is that telling our story will help those who come after us do better: listen more closely, respond with greater compassion, and build the support we so desperately needed.
Patience: The Gift We Chose to Carry Forward
Parenting our autistic daughter, who needs support in every aspect of daily life, meant constant waiting. Waiting for services, waiting for answers, waiting for something to help. Often, we were left with false hope or no answers at all.
For our family, patience became the gift we chose to carry forward from those experiences. It did not erase the fear, grief, or exhaustion. It taught us to slow down, notice the smallest moments, and remain beside our daughter through uncertainty. It was a gift we never expected to receive through lessons we never would have chosen.
