If These Old Scars Could Speak

Written by Bethanie Milford, LCSW

Edited by Christina Thompson

Kintsugi & Honoring the Past: Rather than hiding past fractures, the art of kintsugi acknowledges that every scar has a story. In love, this means accepting past betrayals or difficult times as a shared history that builds resilience.

When Every Door Leads Nowhere

That morning, we woke with a plan: to bring our daughter to the children’s psychiatric unit at a Brooklyn emergency room.

We already knew it wasn’t designed for autistic children with complex support needs, but we had exhausted every other option. We needed someone, anyone to witness what was happening and help us find a path forward.

After all, shouldn’t New York City, one of the most resource-rich and medically advanced cities in the world, have answers? Or at the very least, some direction, some guidance, or a system equipped to support families like ours?

We weren’t expecting a miracle. We weren’t expecting someone to “fix” our daughter. We were simply hoping that somewhere within one of the largest cities in the world, there would be professionals who understood the complexity of autism with profound support needs and could help us navigate a crisis that no family should have to face alone.

The Drive No One Saw

Before we could even get there, we had to survive the drive. Every transition carried the risk of escalating into overwhelming dysregulation. Simply getting dressed, walking to the car, fastening a seatbelt, and pulling out of the driveway required careful planning, constant vigilance, and hope that we could make it through, one step at a time.

As we drove, my mind raced. Would she try to open the car door? Would frustration build until she began kicking the back of the seat or grabbing handfuls of our hair, pulling with a force that words cannot adequately describe? We tried to project calm, but inside we were terrified of what the next few minutes may bring.

Despite everything, we still had to walk through the hospital doors appearing composed. We feared that if we looked too overwhelmed, people would see us as failing parents instead of parents desperately trying to keep our daughter safe. What we longed for was someone who could see beyond the behavior, recognize the desperation beneath it, and simply say, “We understand. Let us help.”

Another Evaluation

Another emergency room visit. Another psychiatric evaluation. This time, at a children’s psychiatric hospital.

I already knew this unit wasn’t designed for her. But we needed one more professional to acknowledge it. We needed something we could bring back to the other systems that kept telling us to “try another service.”

We sat in the waiting room while the clinician called me back. Her father stayed with our daughter in the lobby. Once again, I told our story. I described the fear of watching our daughter repeatedly punch herself in the face, bite us, scratch us until we bled, and attempt to run from our home without any awareness of danger.

By this point, we were emotionally exhausted. Physically exhausted. She was getting bigger, stronger, and harder to keep safe. We were also beginning to realize that we were the only ones willing to say aloud what everyone else seemed to know but no one was willing to acknowledge.

“This Isn’t the Right Setting”

At the end of our meeting, the clinician said exactly what I expected.

“This isn’t the right setting for your daughter.”

I asked if she could include those words in a letter. She told me she would.

When I received the letter, those words were nowhere to be found.

I remember questioning her, confused. Today, I understand that moment differently.

The Referral Loop

The system rarely says, “We don’t have the services your daughter needs.” Instead, it hands families another referral, another phone number, another waiting list, another evaluation, and another program that was never designed to meet the needs of someone with profound autism and severe co-occurring conditions.

Eventually, you arrive exactly where you started.

When There Are No Services Left

The truth is that, for some families, there simply are no appropriate community-based services left. Yet very few professionals are willing to say that aloud. Instead, parents spend years on a heartbreaking scavenger hunt, pursuing supports that do not exist while their loved one continues to deteriorate and the family falls deeper into crisis.

Isn’t it the responsibility of our systems to recognize when every available community support has been exhausted? Isn’t it the ethical responsibility of clinicians to sit down with families and compassionately acknowledge when a higher level of care may be necessary? Sometimes the most supportive thing a provider can do is help a family accept a reality they have been desperately trying to avoid.

The Clinician Who Told Us the Truth

Keeping in mind that our daughter was surrounded by numerous dedicated professionals throughout her life, including physicians, therapists, educators, behavioral providers, and crisis teams, it was our primary care physician who recognized the full weight of what our family was carrying. During the height of our crisis, she called us, sometimes daily, to check on our daughter’s safety, our well-being, and to support us as we fought for a higher level of care.

She was also the only person who had the courage to tell us, “Your situation is not sustainable.”

Those words changed everything.

Rather than taking away hope, they gave us permission to grieve the reality we had been fighting so hard to avoid. They helped us understand that pursuing a higher level of care was not a failure of love or parenting. It was an acknowledgment of the severity of our daughter’s needs and the limits of what even the most devoted family could safely provide at home.

Looking back, I remain deeply grateful for her honesty, compassion, and willingness to say what so many others could not. In the midst of countless professionals involved in our daughter’s care, she was the one who gave us permission to stop blaming ourselves, begin grieving, and move forward toward the care our daughter truly needed.

Five Years Later

Five years have passed since we made the heartbreaking decision to change our daughter’s IEP to a residential educational placement. Even today, I struggle to find clinicians willing to have honest conversations about when residential care may be the safest and most appropriate option for some autistic individuals with the highest support needs.

I still wonder whether our family, and more importantly our daughter, was betrayed by the very systems meant to help us. Schools, hospitals, psychiatric services, and crisis systems often left us feeling unheard while other agencies questioned our parenting instead of recognizing the severity of her disability. Our experience is not unique. It mirrors the stories of countless families who spend years begging for meaningful support before finally reaching a breaking point.

Sometimes the most compassionate thing a provider can say is not, “Have you tried one more service?”

Sometimes it is, “You’ve tried everything that exists. It’s time to discuss a higher level of care.”

Those words are painful to hear.

But they are far less painful than years spent searching for answers that were never there.

Beyond Simplified Narratives

On the other side of this experience, I find myself advocating not with anger, but with awareness. Living in chronic crisis does not mean you love the person you care for any less. Speaking honestly about trauma, exhaustion, fear, or the need for more support is not a rejection of autism, nor is it incompatible with neurodiversity-affirming care. It is the reality of living through repeated crises.

Today, I see the scars on my arms not as symbols of tragedy, but as reminders that my family survived a fractured system that, in many ways, remains fractured today. Caregivers should not have to choose between loving their autistic family member and acknowledging the impact that complex co-occurring conditions and chronic crisis can have on an entire family. Those truths can exist together.

When we silence these conversations or reduce them to accusations of ableism, we unintentionally isolate the very families who are often doing everything they can to keep their loved one safe. If we truly want an autism community that is inclusive, then it must make room for every lived experience, including those shaped by profound disability, chronic crisis, and the difficult decisions that sometimes become necessary to preserve safety, dignity, and quality of life.