Becoming an Autism Expert Because No One Had the Answers: A Journey Through Autism and High Support Needs

Written by Bethanie Milford, LCSW

Edited by Christina Thompson

My autism journey began long before I became the parent of an autistic daughter.

In 1995, as I was graduating from college with my bachelor’s degree, I attended a job fair and learned about a preschool that worked with autistic children. At the time, I knew virtually nothing about autism. I began volunteering at the school and eventually became a paraprofessional working with autistic children.

When Personal Experience Becomes “Expertise”

Fast forward about 15 years. My daughter was three years old and diagnosed autistic.

At the time, I worked in Child Protective Services. My coworkers knew I had an autistic daughter, and whenever a case involved an autistic child, I was often approached for information, resources, or guidance.

I remember wondering: Was I suddenly the autism specialist simply because I had an autistic daughter?

Looking back over the 16 years since her diagnosis, I can identify many similar moments. At different jobs, I was assigned autistic cases or approached when someone needed information about autism.

Now it is 2026, and what strikes me most is how often this still happens.

Who Is Actually the Consultant?

When an autistic person has complex or high support needs, who is actually the consultant?

Where does the pediatrician turn? Who does the therapist consult? Who helps the school when its interventions aren’t working? Who helps the hospital when severe dysregulation doesn’t fit neatly into a psychiatric model? And who does the caregiver call when they have already tried everything they were told to try?

When Everything Is Happening at Once

The complications can become increasingly frightening.

At home, you may simultaneously be trying to manage ongoing GI concerns, severe constipation, sleep problems, medications, and dysregulation that oscillates between repetitive verbal obsessions and physical aggression. Meanwhile, you are coordinating therapies, scheduling medical specialists, monitoring medication changes, communicating with the school, completing paperwork, advocating with insurance companies and agencies, and trying to determine which problem needs attention first.

And then there is something that can easily get lost in conversations about caregiving:

You still have to do everything an average household has to do.

Someone still has to work.
The mortgage or rent still has to be paid.
Groceries still have to be bought.
Laundry still piles up.
Meals still have to be made.
Appointments still have to be scheduled.
Relationships still require attention.
Other children may still need you.
And somehow, everyone is supposed to sleep and begin again tomorrow.

There isn’t a separate life where you manage autism and then return to your regular responsibilities. It is all happening at the same time.

When Caregivers Are Asking How They’ll Make It Through Another Day

You can still open Facebook today and find caregivers desperately asking strangers for help. Some aren’t asking which therapy is best. They’re asking how they’re going to make it through another day.

I remember reaching one of those points myself.

I am not a religious person, but I distinctly remember saying to God:

“I thought you would never give me more than I could handle.”

My daughter could become locked into repetitive verbal cycles, repeating the same demand, phrase, or thought in the same tone over and over, seemingly unable to disengage. Sometimes this continued for one or two hours.

As one cycle began to slow, there would be the briefest moment when you thought you could finally breathe.

Maybe it was ending.

Sometimes it did.

Other times, another demand immediately took its place, and the cycle began again.

When Another Resource List Isn’t the Answer

Those are the moments when families don’t need another generic resource list. They need someone who understands the complexity, can look at the entire picture, and can say:

“I understand what is happening. Here is what we can try next, and here is who can help.”

Sixteen years later, one of the most difficult realizations has been that sometimes the person a family needs simply doesn’t exist—or, if they do, the families has no realistic way to find them.

So, Who Knows What Comes Next?

We talk a great deal about autism awareness, acceptance, services, and resources. But perhaps we also need to ask a harder question:

When an autistic person and their family have exhausted the usual recommendations, who is actually responsible for knowing what comes next?