Eileen Lamb, mother to two sons with autism and a younger daughter, offers a powerful, authentic, and much needed perspective on raising and caring for a profoundly autistic child. In a world where the narratives of those with milder support needs often eclipse those with greater need, voices like Eileen’s are essential—especially for parents and caregivers who often feel overlooked, unheard or misunderstood. Whether you’re part of the profound autism community or simply wish to better understand their experiences, Eileen’s reflections deserve your attention. Please also see our recent interview with Eileen.

What I wish people knew about parents of profoundly autistic children…
Written by Eileen Lamb

What I Wish People Knew about Parents of Profoundly Autistic Children

Photograph shared with permission of Eileen Lamb

We’re not just tired. We’re on alert. Always.
We don’t sleep deeply. We don’t rest fully.
Even when our children are safe, our nervous systems don’t get the memo.

We scan rooms for danger before we enter.
We memorize every object that could be swallowed, shattered, or used to self-harm.

We don’t get to relax at dinner. Or at the park. Or even in our own homes.

We are always calculating…where the exits are, how loud the room is, whether the people near us are kind or curious or about to judge.

We lose track of how many times we’ve said “no” in a day.
Not because we want to but because our child’s safety depends on it.

We love fiercely. Unconditionally.
But that love exists alongside grief. Not instead of it.

We grieve the milestones that never come.
The “I love you” we’ve never heard.
The hugs that never happen.
The kind of childhood our other kids miss out on.

We have joy. Absolutely.
We celebrate the things most people take for granted.
A shared glance. A smile. A word approximation. A safe day.

But the truth is…beneath it all, we are carrying so much.
And no one sees it unless they’ve lived it.

We don’t need pity. We don’t need praise.
We just want people to understand that behind every autistic child is someone fighting, quietly, constantly, and often invisibly, to keep them safe, supported, and seen.

Caregivers matter even if they’re not the one living with autism. And often, they do too.

Above blog is reprinted here with permission of Eileen Lamb:

Lamb, E. (2025). Perspectives: What I wish people knew about parents of profoundly autistic children. Science in Autism Treatment, 22(7).

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