When Professional Knowledge Meets Personal Reality:

Written by Bethanie Milford, LCSW

Edited by Christina Thompson

A Therapist, a Mother, and the Conversations  Avoided About Autism

There is a version of autism that the public rarely sees, but it is not because families are unwilling to talk about it. More often, it is because many of us have learned that telling the truth about our lives can be mistaken for blaming the people we love most. I know this tension intimately, not only as a therapist who provides therapy and diagnostic evaluations for autistic individuals, but also as the mother of an adult AuDHD daughter with full support needs.

Holding Onto Hope

When my daughter was younger, I kept believing that if I learned enough, loved enough, advocated enough, or found the right support, these moments would become less frequent. That hope carried me through countless sleepless nights. One of those nights still lives vividly in my memory.

One Night That Never Left Me

My memory often drifts back to nights like this. My daughter has very limited scripted language and a moderate intellectual impairment, making it difficult for her to communicate the distress she experiences or what she needs in those moments. I found myself constantly oscillating between comforting her and trying to help her navigate communication, always searching for a way to understand what she was desperately trying to express.

We go to bed with her curled closely against my side. She falls asleep, and I allow myself to think, Now I can finally get some rest. Then I wake to a firm kick in the middle of my back. I brace for the next one. I lie still, trying not to cry or make a sound, hoping that if I remain quiet, maybe she will settle. I feel the familiar vibration of an agitated hum coming from her body, and my mind immediately begins racing. Will it continue? Can I tell anyone that I feel afraid without it being interpreted as me villainizing my daughter? So I say nothing. I carry the fear silently and breathe whenever I have the opportunity.

Morning comes too quickly. Before my feet even touch the floor, my thoughts shift to the day ahead: I have to work today. Will she go to school? Will she resist? How will she handle the transition? I check my wallet and realize I only have a few dollars. She has been perseverating on getting Dunkin’, so I buy what I can because sometimes one small comfort can make all the difference. Three more miles, I tell myself. One more breath. If we can just make it to school, I know she will have support, and for a little while I can breathe knowing she is safe.

Instead, we arrive, and she refuses to get out of the car. Her body becomes dead weight as she slides to the ground. She digs her fingernails into my skin while I try to help her safely through the moment. Eventually, I find myself crying on the pavement beside her while people walk past us. Most continue on without saying a word. Then one person stops, looks at us, and quietly says, “I understand.” It lasted only a few seconds, but in that moment I felt something I had not felt in a long time: that both my daughter and I had been truly seen.

All I have ever wanted is for her to feel safe in her own body, and in those moments there is nothing I can do to take away the distress overwhelming her nervous system.

The Fear of Speaking Honestly

As I write this, I think about the conversations taking place within the autism community and how quickly the phrase "warrior mom" can shut them down before they even begin. When I hear that phrase, my first instinct is to prove that I am not that person. Why do I feel compelled to defend myself before I have even spoken? Because I care deeply about how my daughter is perceived. I never want her hardest moments to define her.

Yet somewhere along the way, it has begun to feel as though speaking honestly about caregiving means risking being placed into a category of parents who are accused of centering themselves instead of their autistic child.

Two Truths at Once

But isn’t everything I do centered on her? Her father and I pour every resource we have into helping her. We have sacrificed sleep, finances, careers, our physical health, and our emotional well-being because we love her more than anything in this world. We often neglect our own needs entirely. This has never been about recognition, sympathy, or “fixing” her. It has always been about making sure she has what she needs to feel as safe, healthy, and supported as possible.

I also find myself wrestling with another message I frequently hear, that autism should never be described as tragic. I understand why that statement exists. Autism is a neurodevelopmental difference, not a moral failing, and autistic people deserve dignity, respect, accommodations, and every opportunity to thrive.

But I also wonder whether we have unintentionally lost the ability to distinguish between autism itself and the suffering that sometimes accompanies it. When I am bitten, scratched, punched, or injured by the person I love most because her nervous system is overwhelmed in ways she cannot control, isn’t the pain itself tragic? When I watch her trapped in distress that she cannot escape, isn’t that tragic? Acknowledging suffering is not the same as defining autism as tragedy.

This is the dialectic I wish we could hold. We can recognize autistic identity as valuable while also acknowledging that some autistic individuals and their families live with extraordinary challenges that require far more support than society currently provides. These truths are not mutually exclusive. In fact, they depend on one another. We cannot advocate effectively for people with full support needs if we are afraid to describe the realities they experience every day.

Too often, families simply stop talking. We keep working. We keep paying bills. We continue coordinating therapies, medical appointments, specialists, medications, school meetings, insurance paperwork, and crisis planning. We beg for five uninterrupted minutes to recover, for one nap, for enough sleep to function safely at work. We continue showing up because love demands it, even when our own bodies and minds are running on empty.

When Telling the Truth Becomes Taboo

As both a therapist and a mother, I have witnessed autistic people flourish when they receive understanding, accommodations, and individualized support. I have also witnessed families living in chronic crisis because those supports either do not exist or arrive years too late. Both realities deserve space in our conversations.

Listening to autistic voices should never require silencing caregivers, just as supporting caregivers should never require diminishing autistic people. We should not have to choose whose pain deserves to be heard. Compassion is not a finite resource.

I often found myself thinking, I just need to make it through the next hour. I love my daughter more than words can express, and more than anything, I want her to be okay. At the same time, I lived with a constant undercurrent of fear. When would the next punch come? The next kick? The next scratch across skin already covered with bruises and wounds that had not yet healed? The physical pain was real. So was the emotional weight that lingered long after the bruises faded and the scratches began to close.

In those moments, the fear was so overwhelming that I found myself wondering, Will my family actually survive this? Then came another evaluation, another intake, another crisis response, another professional. Once again, we would tell our story, hoping someone would finally understand, only to leave feeling blamed, dismissed, or misunderstood.

Loving her and feeling afraid were never contradictions. They existed together, day after day, as I navigated caring for a child who was struggling to communicate distress that neither of us fully understood.

Yet public conversations so often shifts away from that reality. Instead of asking how to keep autistic individuals and their families safe or what supports are needed, the discussion becomes about comparing autistic experiences.

I have shared only two brief snapshots from a single day. Now imagine living those moments over and over again, day after day, month after month, and year after year. For many families, these are not isolated events. They are part of daily life, quietly endured behind closed doors while searching for understanding, support, and hope.

When Silence Isn’t the Answer

I will continue writing about profound autism, co-occurring conditions, chronic dysregulation, communication differences, caregiver well-being, and the realities that many families quietly carry behind closed doors. Not to diminish autistic people. Not to compare one autistic experience to another. And not to ask anyone to choose between acceptance and support.

I write because every autistic person deserves to be understood, and every family deserves to be heard. Families should not have to remain silent out of fear that speaking honestly will be mistaken for rejecting or devaluing their loved one. Likewise, autistic individuals with lower support needs should not have to fight to have their experiences recognized. These conversations do not compete with one another. They strengthen one another by broadening our understanding of autism across the spectrum of support needs.

My hope is that these articles encourage curiosity instead of judgment, dialogue instead of division, and compassion instead of comparison. When we acknowledge the full complexity of autism, we create opportunities for better research, more responsive services, safer crisis systems, and more meaningful support for autistic individuals and the people who love them.

We should not have to choose between hope and honesty. We can acknowledge profound struggle while still holding on to hope, because both truths can exist at the same time.