Profound Autism Parenting: The Conversations We’re Not Having (But Should)
- {sb}
- Sep 15
- 8 min read
Updated: Sep 23
Not long ago, I enrolled in a class that promised to, "Empower Caregivers".
It sounded exactly like what I needed, a space to learn, connect with "new" state & local resources, and walk away feeling stronger and more supported.
But instead, I left feeling discouraged, more isolated, and less hopeful than when I started. It wasn’t just the lack of practical tools, or the blatant discrimination of attendees, or the horribly designed presentation slides, it was the unspoken assumption that all caregivers live the same life, have the same needs, and can be “lifted up” with dismissive and insulting cookie-cutter advice.
Telling a Caregiver Parent to "take a bubble bath” is gaslighting, not empowerment.
The truth is, when you’re raising a profoundly autistic child, the reality is different and most people don’t want to hear how different it really is. No parent is prepared to have a child who requires 24/7 care and assistance for life, never toilet trains, and whose needs create a fully home-bound, isolated lifestyle because nowhere are they safe, accepted, or welcomed. These are the conversations polite society avoids, but they are exactly why parents like us need a space to speak openly and without judgment.
Empowerment in this life isn’t about pep talks. It’s about radical acceptance, boundaries, and a community {no matter how small} built on truth.
The Empowerment Class we profound caregiver parents need should cover the real topics. The ones that make people uncomfortable, the ones we actually live every single day.
Here’s where I’d start.
The Double Standard of “Self-Care”
What you’re told: “Take care of yourself.”
What happens next: The moment you show up with your hair done, a fresh outfit, or even a little bit of energy, people shame you for “looking too put together.” The implication is that you ( OR YOUR CHILD) can’t possibly be struggling if you look like that.
The truth: Caregiver parents live under a microscope. If we look run down, we’re judged as neglectful. If we look polished, we’re judged as ungrateful. Either way, we can’t win.
How to reframe (with power):
Self-care isn’t vanity—it’s survival. A shower, a haircut, or clean clothes are not luxuries. They’re basic human dignity.
Stop explaining. You don’t owe anyone a breakdown of how hard your life is just to justify why you “deserve” to look nice.
Remember who you’re doing it for. Taking care of yourself is for you and for your child who needs a caregiver who still feels human.
When People Compare Your Life to Someone Else’s
What happens: When people find out you’re raising a profoundly autistic child, they often feel the need to tell you a story. Usually it’s about another mom they "knew" but it’s never even the same disability or diagnosis.
You hear about the mom of a child with Down Syndrome who went on to start a business, launch a nonprofit, or create some advocacy program. The message underneath? If she can do it, so can you.
Why it hurts:
It dismisses your daily reality.
It assumes all disabilities are the same (they’re not).
It tells you, loud and clear, that what you are doing is not enough.
It forces you to carry not only your child’s care but the weight of proving your worth.
How to cope (with power + strategy):
Name it privately for what it is: passive-aggressive and dismissive.
Choose not to educate every time. You don’t owe a full lecture on why autism ≠ Down Syndrome.
Protect your energy. Cut the story short with: “That’s wonderful for them, but our life is very different.”
Remember this truth: You don’t need to build an empire to prove your love. Keeping your child safe, alive, and loved is already everything.
Your Loneliness & Emotional Burnout Are Real & Valid
What you’re experiencing:
You try to explain your life, boundaries, or exhaustion to others and you’re met with dismissive comments, awkward silence, or toxic positivity. Some people even refuse to understand because it would require them to change how they see you.
How to respond (with power + strategy):
Stop explaining to the unwilling. Save your truth for those who will hold space without judgment.
Name the loneliness. Saying it out loud! To yourself or to a safe person. Breaks its silent grip.
Build micro-communities. Even one “I get it” from someone living a similar life can be a lifeline.
Validate yourself first. Check your own self-talk using language from the Validation & Support column—not the Toxic Positivity column.
You Have Permission to Redefine Holidays & Milestones
What you’re experiencing:
Holidays, birthdays, and milestones often need to be completely reimagined or skipped altogether to protect your child’s regulation and your family’s peace. Outsiders may see this as “sad” or “unfair,” but they’re not living your reality.
How to respond (with power + strategy):
Write yourself a Holiday Permission Slip. Give yourself written permission to celebrate (or not) however you wish.
Ditch comparison. Mute social media accounts that trigger guilt or “shoulds.”
Create micro-traditions. Build small, sensory-friendly rituals that work for your household.
Honor private joy. Your memories don’t require an audience.
It’s Okay If You’ve Forgotten What Fun Feels Like
What you’re experiencing:
When your identity becomes so intertwined with caregiving, you lose touch with what makes you happy. You can’t remember the last time you laughed for yourself or the last hobby that was yours alone.
How to respond (with power + strategy):
Start micro. Try one new thing a month with no pressure to excel.
Notice joy in real time. When something makes you smile, pause and say, “I want more of this.”
Schedule “you-only” time. Even 10 minutes counts. Protect it like a medical appointment.
Reconnect with your past self. Revisit what you loved before caregiving and reintroduce it in small ways.
The System Knows Exactly What It’s Doing
What you’re experiencing:
You know, the case managers, school reps, or healthcare workers who consistently “forget,” lose paperwork, misunderstand basic instructions, or play dumb to delay or avoid accountability.
This is a tactic, not a lack of knowledge.
It’s often used to:
Shift the labor back onto the caregiver
Delay necessary care or approvals
Avoid following through on legal obligations
Wear you down until you give up
How to respond (with power + strategy):
Put it in writing. Follow up verbal conversations with recap emails: “As discussed…”
Name it without emotion. Use calm, clear language: “Please confirm your understanding below so there’s no further confusion.”
Use their chain of command. Escalate early when you see a pattern.
Don’t teach them their job. Link to the policy or law instead of explaining it yourself.
Conserve energy for your child, not the system. Setting limits on how much bureaucracy you engage with isn’t “difficult”,
it’s smart advocacy.
Your Relationship Deserves More Than Logistics
What you’re experiencing:
When you and your partner are co-caregivers, it’s easy for the relationship to slip into business-mode or worse, two ships passing in the night.
Without fun and intimacy, Parents Love Connections erode. With no child care or respite of any kind available for our families. Date night is anything but typical.
How to respond (with power + strategy):
Create an ongoing inside joke. Keep a shared language that’s just for you.
Inject playful intimacy. Even silly online content can keep sexual energy alive.
Celebrate your “blessings” ironically. Humor can turn a stress spiral into a bonding moment.
Give each other a pass. Not every moment has to be romantic—sometimes, it’s enough to laugh together.
You Are Allowed to Set Boundaries Without Guilt
What you’re experiencing:
Caregivers are conditioned to measure their worth by how much they give and fix. When you start setting limits, guilt can feel overwhelming.
How to respond (with power + strategy):
Reframe guilt as growth. Guilt often means you’re breaking unhealthy conditioning.
Detach with compassion. Step back from situations you can’t (and shouldn’t) fix.
Release relationships that require self-abandonment. You are allowed to choose peace over chaos.
Use mantras for strength. Example: “I am protecting my peace, even when others prefer my chaos.”
Living with the Fear of the Next Head Bang
For many of us raising profoundly autistic children, few things are more gutting than watching your child hurt themselves and being powerless to stop it.
Days like yesterday remind me how fragile the calm can be. After a month and a half without an episode, my teenage son banged his head so hard it split the skin open. We live every day knowing that another moment like that could come at any time. We live with the fear that one of those moments could be the last.
It’s the most helpless feeling a parent can have. The heartbreak is constant. It makes living really difficult some days, because part of you is always bracing for impact.
How to respond (with power + strategy):
Have a crisis plan. Keep the necessary medical supplies and contact info close at hand.
Know your calming tools. Whether it’s sensory input, movement, or a safe space, act quickly to reduce triggers where you can.
Protect your own body and mind. Step out of the room if you need to breathe and ground yourself—your safety matters too.
Talk about it. Share with people who understand, so you’re not carrying the weight in silence.
Release the shame. Your child’s self-injurious behavior is not your fault.
No Help Is Coming. And That’s the Hardest Truth
You are the only person who will care for your child. Even when you’re sick. Even when you’re exhausted. Even when you’re gone.
That reality keeps many of us up at night—not because we lack love or dedication, but because the weight is too heavy for one human to carry forever.
Every parent I’ve ever met raising a profoundly disabled child has one conversation that comes up again and again: the family plan if we all have to go together. We talk about it quietly, sometimes in code, sometimes with a grim sort of humor but we all know what it means. We imagine the one scenario that would take us away with our child so we wouldn’t have to leave them behind or place that unbearable burden on someone else.
Mine? Armageddon.
But here’s the part that most people will never hear us say out loud: what we’re really talking about is dying with our child. It’s something no parent should ever have to think about—and yet for many of us, it’s the thought that lives just under the surface every single day.
Right now, there is no unconditional, trustworthy, reliable support system in place. Parents like us are left to hope that leaders—such as RFK and the Department of Health and Human Services—will do the right thing and create long-term, lifetime care solutions for our profoundly disabled children. We need a system that allows parents to die in peace, knowing their children will be safe, supported, and cared for with dignity.
Today, that safety net doesn’t exist.
Where have you found help you can trust?
This is just the beginning. There are so many conversations we need to have without sugarcoating, without judgment, and without someone telling us to “just be positive.”
Are you a caregiving parent of a profoundly autistic human? I'd love to hear from you!
What would help you feel more empowered as a caregiver parent?
Hi. I’m {sb}. Brand Identity Designer and owner of {sb}Cre8tive, where I've help brands grow, adapt, and thrive for the last 20 years.
Away from my desk, along with my handsome Other Half, I’m a full-time co-caregiver and advocate for my profoundly autistic teenage son. This lived experience shapes not only how I work, but how I see the world through a lens of resilience, resourcefulness, and real connection.
I believe in building relationships that fuel growth, cre8ting work that matters, and telling the truth about what it takes to balance ambition with life’s hardest roles.
If you’re a fellow caregiver, cre8tive professional, or both, I hope my words remind you: you are not alone, and your story matters.
Press & Media Inquiries: sb@sbcre8tive.com
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