The Medical Marijuana Journey

Written by Bethanie Milford, LCSW

Edited by Christina Thompson

Our experience isn’t evidence that cannabis will or will not help another autistic person. Autism is extraordinarily heterogeneous, cannabis products and formulations vary, and teenagers deserve particularly careful medical consideration.

This is our family’s story, not a treatment recommendation.

One More Path Toward Hope

One of the many paths we explored came after I stumbled across a Facebook group focused on medical marijuana and autism called the Whole Plant Access for Autism Support Group.

By that point, we had tried so many other options, always hoping to help our daughter find some semblance of consistent self-regulation and relief from the extreme dysregulation that could result in harm to herself or others.

Like so many parents searching for answers, I read the stories.

I saw the successes.

Families described calmer days, fewer crises, better sleep, less aggression, and children who suddenly seemed more available to the world around them. Some of the stories sounded almost impossible.

When you are living in survival mode, those stories don’t just sound promising.

They can feel like a lifeline.

In retrospect, I have learned to look at these spaces differently. Many support groups understandably highlight the success stories, the transformations, and the breakthroughs that desperate families can only dream about. What is much harder to find are the stories about what happened six months later, a year later, or when the treatment stopped working altogether.

Sometimes what looks like hope from the outside turns out to be smoke and mirrors.

That doesn’t mean the families sharing those successes weren’t telling the truth. I believe many of them were. We would eventually have our own period when medical marijuana seemed almost miraculous.

But I have learned that an initial response and a sustainable solution are two very different things.

When you are desperately searching for something that will help your child, it can be almost impossible to see that distinction until you have lived it yourself.

We Wanted to Do Everything the “Right” Way

We decided to explore medical marijuana, but we wanted to do everything legally and with medical oversight.

We weren’t buying marijuana off the street or experimenting on our own. We pursued a New York medical marijuana card and obtained cannabis through a licensed medical dispensary. We wanted physicians involved. We wanted dosing guidance. We wanted to know what our daughter was receiving.

We followed the system exactly as families are so often told to do.

Then we encountered a problem.

Autism Wasn’t Enough

Approximately five years ago, New York’s medical marijuana program was considerably more restrictive than it is today.

At the time, patients generally needed to have one of New York’s specifically designated qualifying medical conditions. PTSD had been added as a qualifying condition in 2017.

Autism, however, was not one of those qualifying conditions.

That created an uncomfortable contradiction.

We weren’t seeking marijuana because we believed our daughter needed treatment for being autistic. We were looking for another possible way to reduce the extreme dysregulation and dangerous behaviors that were affecting her quality of life and safety.

Yet those needs did not fit neatly into the system.

We learned that to legally access medical marijuana, she would need to qualify through another recognized condition, such as PTSD.

There was something deeply unsettling about that.

We spend so much time telling families to trust medical professionals, follow the system, obtain the appropriate diagnoses, and pursue treatments responsibly.

We did exactly that.

But what happens when doing everything “right” still requires fitting your child into a diagnostic box that doesn’t accurately describe why you’re seeking the treatment?

Then Something Changed

When my daughter began medical cannabis, something happened that is still difficult to describe.

There were moments when she seemed calmer.

More accessible.

More regulated.

It wasn’t about making her “less autistic.” That was never the goal.

It was about seeing some of the distress quiet down.

If you have spent long periods watching your child struggle with severe dysregulation, you understand how enormous something seemingly small can feel.

A calmer transition.

Less agitation.

A reduction in behaviors that could hurt her or someone else.

A moment when her body seemed able to simply be at peace.

And with that came hope.

Maybe this was it.

Maybe we had finally found something that could help.

And Then It Was Gone

The effects didn’t last. They faded from what we had initially experienced.

It felt as though we had been allowed to glimpse something, only to have it taken away.

Had cannabis simply done nothing from the beginning, perhaps the disappointment would have been easier to process. We could have said, “We tried it. It didn’t work,” and moved on to the next possibility.

Instead, we had experienced hope.

That made losing it different.

It felt cruel.

That is the part that still hurts.

What I Understand Differently Now

Our medical marijuana journey taught me something much larger about what happens when families become desperate for answers.

Families raising autistic children with significant support needs are constantly told to seek professional help. Follow medical recommendations. Use evidence-based treatments. Don’t experiment on your own. Go through the appropriate channels.

Safeguards matter.

But families also encounter situations where the available system simply has no category for the problem sitting directly in front of them.

That is when families begin searching.

We search Facebook groups. We search research studies. We search other parents’ stories. We search for doctors, specialists, medications, therapies, diets, supplements, schools, programs, anything that might give our child some relief.

And when conventional systems have repeatedly failed your child, promises of something different become incredibly powerful.

That is something I understand differently now.

I can look back at the parent I was then with everything I know today and wonder how I got there.

The Shame I Still Carry

And even now, I carry shame when I think about this part of our journey.

Did I go too far as a parent?

It is a question I have asked myself more times than I can count.

Was I so desperate to help my daughter find some semblance of regulation that I became willing to consider almost anything that was legal, ethical, and offered some possibility of hope? Did I believe too deeply in the stories I was reading? Did desperation make it harder to distinguish between something that might truly help and something I simply needed to believe would help?

Those are difficult questions to admit out loud.

Because I wasn’t searching for a cure for autism.

I wasn’t trying to change who my daughter was.

I was watching my child struggle to exist comfortably in her own body. I was watching dysregulation become so significant that she could hurt herself or others.

I wanted her to have some peace.

And I wanted our family to survive.

So we kept searching.

What Desperation Looks Like From the Inside

That is the part I think we sometimes miss when we talk about desperate parents and the choices they make. It is easy to evaluate those decisions from the outside, removed from the sleepless nights, emergency rooms, injuries, phone calls, medications that didn’t work, and the constant fear of what the next crisis might bring.

It is much harder when you are the parent standing in the middle of it.

Eventually, New York changed its medical cannabis program. Beginning in January 2022, practitioners were given much broader discretion to certify patients when they believed medical cannabis could be clinically appropriate.

But we went through this before that expansion.

We followed the rules that existed at the time.

And for a brief moment, we thought we had found something.

For a brief moment, I saw a calmness in my daughter that I had desperately wanted her to experience.

Then we watched it disappear.

That is why, when I think about our medical marijuana journey, I think about the movie Awakenings.

The movie tells the story of patients who had spent decades in profoundly unresponsive states. A medication temporarily brought dramatic improvements, giving them and the people who loved them a glimpse of connection, possibility, and a life they thought might have been lost. Then the medication gradually stopped working, and those gains began to disappear.

That comparison has stayed with me because, in our own very different circumstances, I understood the devastation of being given a glimpse of something you desperately wanted for someone you love and then watching it slip away.

How Far Is Too Far?

Perhaps that is also why the shame has been so difficult to put down.

I can still ask myself whether I went too far.

But I can also ask a different question now:

How desperate does a family have to become before something they once never imagined considering begins to feel like hope?

Sometimes the hardest treatment isn’t the one that never works.

Sometimes it’s the one that lets you see what might be possible before taking that possibility away.