HIDDEN BEHIND CLOSED DOORS BEYOND EITHER/OR: MAKING ROOM FOR THE MOST COMPLEX AUTISM EXPERIENCES
My name is Bethanie Milford. I am a licensed clinical social worker, therapist to neurodivergent individuals, diagnostic evaluator specializing in autism, ADHD, and co-occurring conditions, and the mother of an adult daughter with profound autism. My perspective is shaped by both professional expertise and lived experience.
For the past six years, my work as a solo private practitioner has focused largely on the people who were missed, helping individuals better understand themselves, affirming their identities, and connecting them with the resources and supports they deserve.
Today, I’m turning my attention to another part of the autism spectrum, for lack of a better way to describe it. I’m revisiting a chapter of my life that I still carry in my body.
For years, it didn’t feel safe to tell these stories. I was building my practice while trying to help keep my family afloat financially, emotionally, and physically. We lived through crises that brought us into contact with countless providers, and despite having every service imaginable in place, there were times we were met with judgment or even the implication that CPS could become involved. Some parents truly do everything humanly possible. Sometimes all they’re searching for is a single moment to catch their breath. Sometimes they’re simply hoping that one more appointment, one more therapy, or one more intervention might improve their loved one’s quality of life by even 1%, so they can feel more comfortable in their own body.
I deeply value neurodiversity affirming care while also recognizing that some experiences remain largely absent from public conversations. My goal is not to define autism by hardship, speak for every autistic person, or portray my family as heroic or deserving of pity. It is to give voice to realities that are often hidden and to add one perspective that is too often overlooked.
Many families living with profound autism don’t recognize the version of autism that is most visible in public conversations, the one centered on strengths, exceptional abilities, or extraordinary talents. Their reality is often one of chronic crisis, survival, relentless advocacy, and, at times, trauma. That does not make their loved one any less valuable. It simply means their experience deserves to be part of the conversation too.
The articles I will write and share are not about portraying autism as a tragedy or my daughter and others as a burden. They are not trauma dumping, nor are they an attempt to be a “warrior mom.” They are about creating space for honest, compassionate conversations that acknowledge the complexity of autism while honoring the dignity, humanity, and inherent worth of autistic people. By speaking openly about the realities some individuals and families face, I hope to foster greater understanding, improve support, and encourage more informed and compassionate systems of care.
I believe we can hold more than one truth at a time. We can celebrate autistic identity, embrace neurodiversity affirming care, and acknowledge that some autistic individuals require lifelong, intensive support. We can recognize strengths while also talking honestly about profound disability, chronic dysregulation, communication barriers, caregiver well being, safety concerns and the urgent need for better services. These truths are not in conflict.
Throughout this series, I will explore profound autism, co-occurring conditions, communication differences, chronic dysregulation, crisis response, caregiver health, and the systems families depend on. My hope is that these articles help families feel less alone, support professionals in better understanding complex needs, and encourage thoughtful, evidence informed conversations that lead to safer, more compassionate care.
Purpose of This Series
Increase understanding of profound autism and complex support needs.
Highlight caregiver health, financial, and systemic challenges.
Promote balanced, evidence informed discussions.
Encourage more effective, compassionate supports for autistic individuals and their families.
Improve understanding among healthcare, education, emergency response, and child welfare professionals.
Why These Conversations Matter
Caregiver health: Family caregivers experience higher rates of chronic stress, depression, anxiety, and physical health problems than non caregivers.
Financial impact: Many caregivers reduce work hours, leave employment, or experience significant financial strain due to caregiving responsibilities.
Crisis response: Many emergency, healthcare, education, and child welfare professionals receive limited training in supporting autistic individuals with complex support needs.
Profound autism: Individuals with profound autism often require lifelong, intensive support but remain underrepresented in research, policy, and public discussion.
These articles are not intended to represent every autistic experience. They are an invitation to broaden the conversation to recognize that autistic identity, profound disability, caregiver well being, and meaningful support can all exist within the same narrative. By making room for these conversations, we move closer to systems that are informed, compassionate, and responsive to the needs of every autistic person and every family.
