October is starting to feel a lot like April—Autism Awareness Month. Between headlines about Tylenol causing autism and new buzz around Leucovorin as a miracle treatment, the noise feels endless. Add to that the constant battle over “levels” of autism, and honestly—it’s exhausting.
After nearly three decades in this world, the rhetoric gets old. My son, Jacob, is 27. He’s considered profoundly autistic, depending on which system you ask. Truthfully, there’s no accurate test that captures his abilities. His functioning changes day by day, influenced by support, environment, and maybe even the atmospheric pressure.
What doesn’t change is this: Jacob has no concept of safety. He needs help with daily living skills. He will need 24/7 care for the rest of his life.
The Early Years: Searching for Answers
I still remember those early days—Jacob spitting up constantly, chronic ear infections, endless attempts at potty training. He had some speech at first, but then it disappeared. By age four, sleep became a nightmare. My mother insisted he shouldn’t still be in a crib, but it was the only place he felt secure. Once the crib was gone, so was sleep. We couldn’t clip his toenails, couldn’t bathe him—he hated water. The fear and desperation to help this sweet little boy were unlike anything I’d ever experienced.
Back then, the talk was all about vaccines. Mercury was supposedly the cause. “Treatments” ranged from chelation therapy to hyperbaric chambers, elimination diets, and every “miracle cure” you could imagine. Add in TEACCH, ABA, OT, PT, speech therapy, augmentative communication, music therapy—you name it. We had choices, yes. But they came with no clear direction, no evidence, and no guarantees. It was “pick your poison” parenting.
The Blame Game
Like so many other parents, I wanted—needed—an explanation. Maybe it was the vaccines. Or the one time I ate tuna. We had the yard sprayed for bees once. Could it have been that? I scoured medical records, piecing together clues that were never really there. Eventually, I realized the signs of autism were visible from day one.
For years, I carried that guilt. I questioned everything I did, every decision I made. I blamed myself for things I couldn’t control. The self-doubt was relentless—fueled by well-meaning professionals and the more-than-occasional judgmental comment.
I wasn’t the “refrigerator mom” from Psych 101. I’ve always been warm-hearted and loving (polar opposite of the fridge mom theory). Yet somehow, I was made to feel like I had failed.
I Don’t Love Autism—but I Love My Son
I know it’s not popular to say this, but I’ve never been one of those parents who “loves autism.” I love my son more than words can ever describe. But autism? No. I see it as a prison sentence for him—trapped in a body and mind that don’t always connect.
And yet, I’ve made peace with knowing none of it was my fault. Not anything I did or didn’t do. Autism is just there. It’s part of our lives, part of our family’s DNA now.
We live with autism—together.
The Search for a Cure—and What It Taught Me
For a long time, I believed there had to be a cure. At one point, we spent $10,000 (for visit #1) on an integrative medicine specialist—one of the top “autism doctors” at the time. I was desperate. I would have sold a kidney if it meant helping our son.
The day before the first appointment, with this autism dr., something incredible happened. Jacob, who hated water for years, suddenly immersed himself in the sink. He couldn’t get enough of it. I turned on the shower—and he stayed there until the hot water ran out.
The next day, we went to see the Autism Dr. He gave him a B12 shot. The “miracle cure” was supposed to help. Instead, Jacob screamed for nearly 24 hours. The doctor said, “Sometimes that happens.” I realized then how easy it would have been to mistake coincidence for a cure.
Through it all, we found a few things that did help. Cutting dairy stopped his ear infections. Craniosacral therapy seemed to calm him. Watching Between the Lions and keeping the TV closed-captioned helped him learn to read. Maybe those things made a difference—or perhaps time did. There’s no way to know for sure.
The New Wave of Theories
Now it’s Tylenol. Now it’s Leucovorin. The cycle repeats—something to blame, something to sell, something to hope for.
But what worries me most is the impact on parents. Once again, mothers will blame themselves. Once again, families will chase treatments that may help some and harm others. And when it doesn’t work—when it makes no difference—the heartbreak cuts deeper.
I believe in trying things to help. But one thing at a time. And always with support, caution, and keeping data.
A Call for Unity, Not Division
The hardest part isn’t the therapies or the uncertainty. It’s the division—the infighting within the autism community itself: the levels, the labels, the endless debates about identity versus disability.
Autism is complex. It exists on a spectrum, yes—but it also coexists with countless other challenges: epilepsy, anxiety, sensory disorders, and medical issues. No two people are the same.
If there’s one thing I know after 27 years, it’s this: we need more evidence-based research, more funding for supports, and less judgment.
It’s time to stop the blaming and the shaming.
It’s time to stand together.
Because autism isn’t a war between parents, or doctors, or philosophies.
It’s a war we fight every day—for the ones we love most.
