What Parenting Severe Autism Really Looks Like
In a recent article published by The Greenwich Sentinel, Aron Boxer discussed the emotional and practical realities families face when raising children with profound autism.
At Diversified Education Services, this perspective is not theoretical. It comes from years of work in special education, executive functioning support, and firsthand family experience with autism, ADHD, learning differences, and the daily realities families often manage behind closed doors.
The Fear No One Wants to Admit
What is the number one fear of any expecting parent?
It’s not the sleepless nights or the cost of raising a child. It’s the unknown—the possibility of a child with a disability like Autism.
Why does that fear exist? And is it justified?
I’ll let you decide.
This Isn’t a Diagnosis—It’s Daily Life
There can be no pictures on the wall, shades, or blinds; otherwise, they’ll be ripped off in a fit of sensory stimulation. There’s no right to peaceful enjoyment. There’s only the constant sound of children’s toys at max volume or scripting—repeating nonsensical words—which can drive you to the point of madness.
When you’re making sure your teenage child wears a pull-up to bed… When you’re trying to stop him from compulsively picking at his skin until it bleeds—leaving him scarred from head to toe… That’s reality—not theory. That’s not a diagnosis on paper. That’s daily life.
What People Don’t See at Home
Dylan’s a handsome kid. You’d see that immediately. But the physical scars from skin-picking tell another story. The deeper wounds aren’t even visible, but they belong to the parent who watches, day after day, knowing that progress will be incremental at best.
And I used to wonder: What is it like at home for these kids and their families?
Most teachers see their students for only six and a half hours a day. That’s it.
What Teachers See vs. Reality
I’ll be honest—sometimes teachers judge. It’s human, but the reality doesn’t start and stop in the classroom.
Putting aside my background as a special education teacher, I’m speaking from the perspective of a step-parent to a 15-year-old with Level-Three Autism, and a 13-year-old with ADHD and learning disabilities.
What Autism Actually Is
Understanding autism is one thing—building support systems that actually help families is another.
As April is Autism Acceptance Month, it’s worth noting that most people can’t clearly define Autism or ASD. Autism is a neurodevelopmental disorder that affects social communication, behavior, and sensory processing.
It exists on a spectrum, meaning that the three diagnosed levels describe a wide range of presentations—from individuals who live independently to those who require constant care.
And that distinction matters.
When It Becomes Obvious
When I met my wife, her son Dylan was seven years old. She didn’t tell me everything up front, but I knew. There was something more going on beyond ADHD. I had worked in special education; I recognized the presentation. His brother had an IEP but presented as typical. Dylan did not.
That’s the thing about profound disabilities versus more common ones: presentation drives perception.
The Difference Between ADHD and Severe Autism
ADHD? It’s everywhere. Here in Greenwich and the New York City metro area, it’s almost normalized. You can’t always tell who has it and who doesn’t. Adults included.
Autism, especially severe Autism, is different. It’s visible. It’s raw. It can’t hide.
We’ve Improved—But Not Enough
Go to a grocery store, YMCA, or the beach. You’ll see it. As a society, we’ve gotten better at inclusion, but we still don’t fully see these families. Years ago, individuals with profound disabilities were hidden away in institutions. Although we’ve evolved, there is still room for improvement.
The Most Challenging Cases
I have worked with the full spectrum: nonverbal students, semi-verbal students, and high-functioning individuals. Some of the toughest cases involved students who could not be left unsupervised—sometimes violent, incontinent, prone to elopement, and often unpredictable.
I’m part-time in Dylan’s life. I see him once or twice during the week and then on weekends. His biological father does his part—every other weekend, dinners, financial support, and consistency where he can.
But the weight—the real, unrelenting responsibility—falls on one person: his mother. My wife.
And that’s where everything changes.
There’s no room for denial; there’s no time for self-pity.
No Denial. No Breaks. No “Normal” Milestones
This is where consistent, individualized support and structure can make a real difference.
The reality is that there will be no traditional milestones or semblance of a “typical” life.
No friendships.
No prom or graduations.
No marriage or kids.
No independent life—only complete dependence.
And that’s where Autism Acceptance becomes more than a slogan.
Acceptance Is Survival
Acceptance isn’t passive. It’s the difference between losing yourself and persevering.
Even if you don’t have a child with Autism, you know someone who does. And your level of understanding—your willingness to accept reality without turning away—matters more than you think.
Because there is no cure coming. That’s not pessimism—it’s reality. Living in denial doesn’t help anyone.
So what can you do?
What You Can Actually Do
Show up. Volunteer. Support organizations that actually help families. Autism Speaks is a national organization, and Abilis is based in Greenwich, where they have provided assistance to local families for 75 years.
Even something as simple as empathy, real empathy, for the parent at the grocery store who looks exhausted… it goes a long way.
We’ve come a long way as a society in understanding Autism, but we still have a long way to go.
The Misconceptions We Still Carry
I grew up thinking Rain Man was Autism—a socially awkward savant counting toothpicks and Blackjack cards. That image stuck for a generation. But that’s not the reality for most families.
Autism is not a mental illness. It’s a disorder of communication and processing. Everything comes in, but very little comes out.
And no matter the presentation, the principle should be simple: treat people fairly.
Not equally. Not equitably. Not abstractly. Fairly.
Because fairness recognizes that some people require more—more support, more resources, more understanding.
Where We’re Failing Families
We talk a lot about problems in this country. But one of the most overlooked is how we prioritize families with disabilities. Real support isn’t just a charity event or annual fundraiser. It’s a sustained, meaningful investment, both financially and socially.
I’ve seen what happens when resources are available; I’ve also seen what happens when they’re not.
The Reality No One Talks About
At the end of the day, children like Dylan will always depend on the people who love them.
And not every family has the means to carry that weight alone.
That’s the part we don’t talk about enough.
And that’s the part that should matter most.
If you’re a parent navigating this reality and need support, you’re not alone.