“We can’t be friends anymore. You’ve become that mom.”
That mom. Those words sting. They’re hard to hear and even harder to swallow—until you stop and really think about what they might mean. Maybe being that mom is being the kind of mom who makes that kid’s life fuller, more meaningful, and rooted in value and acceptance. The kind of mom who helps change a community—or even the world—by challenging how people see that kid. The kind who advocates loudly, who stands on rooftops if she has to, to change harmful perceptions and demand better.
When it first became clear that an autism diagnosis might be part of our family’s story, I started hearing comments from acquaintances.
“Are you sure you want to move forward with testing? That diagnosis will follow you—your child—for the rest of her life.”
“I hope you don’t become that mom.”
“Oh goodness, I’m so sorry. How disappointing.”
None of those statements are helpful. They don’t serve anyone. Do we really want to hide our differences? Do we want to keep living inside a bubble of shame, within an ableist community that prides itself on some imagined version of a “perfect” person? And really—what does a perfect person even look like? How do they act? Who decided that?
I know I don’t want that.
Let’s talk about the word diagnosis. I know—it can be triggering. The word autism carries so much negative baggage in our culture: different, weird, not like us, scary, damaged. But the truth is, it doesn’t mean any of those things.
Yes, an autism diagnosis is lifelong. But here’s the part people seem to miss—autism itself is lifelong, diagnosis or not. Shocking, right? A diagnosis doesn’t create autism; it simply names it. And that name can open doors to accommodations, understanding, and services that make life more accessible.
Can an autistic person survive in an ableist world without a diagnosis? Of course. We wouldn’t exist if we couldn’t. Genetics play a massive role in neurodiversity. But statistics also tell us something deeply concerning: autistic individuals face a significantly higher risk of suicide, higher rates of mental health struggles, and higher unemployment. One study even found that the risk of death by suicide was seven times higher for people with autism than for the general population in Sweden. Bullying plays a role. Lack of support plays a role. Being misunderstood plays a role.
We are also learning that autism is far more common than we once believed. Many adults likely meet the criteria but were never diagnosed, never supported, never told why life felt harder, louder, or more confusing. I know I wasn’t. I genuinely thought everyone experienced the world the way I did. Many undiagnosed autistics never receive the help they deserve—or any help at all.
An autism diagnosis should never be viewed as a tragedy. You don’t grow out of a neurological difference. You don’t grow out of being autistic. So why are people so afraid of the word? Because we were taught to be. Because anything different has been labeled as wrong.
And that brings me here: I’m proud to be that mom.
I’ve never been easily embarrassed. I’m an open book by nature. And because of that, I’ve decided I can embrace being that mom. Maybe I’m even the perfect that mom. I want to help create a world where differences are celebrated instead of hidden. I want my children to grow up in a society that’s more accepting than the one before them.
What people often mean when they say that mom is “autism mom.” And I’ve learned there are many layers and subcultures within the disability community, each with its own language and lived experiences. Many disabled and #ActuallyAutistic adults strongly dislike parents who turn themselves into martyrs—those who publicize their child’s most vulnerable moments, who film meltdowns, who center themselves instead of listening to autistic voices. Often, these parents believe they’re helping, but they don’t stop to consider the harm they may be causing.
I asked autistic individuals what the term autism mom means to them. Here’s what they shared:
“In some circles, it refers to moms who grieve the diagnosis publicly, blog about it, film meltdowns, and make it all about themselves—without considering the long-term impact on their child.”
“Autism mom often describes someone who views themselves as the victim of their child’s neurology. Autistic adults remember the trauma this causes. Autistic is an identity, not something adjacent people can claim. Just as I’m not a Black mom because my child is Black, or a queer mom because my child is queer—if autistic is not your neurology, you shouldn’t hijack it.”
Those words are heavy. They matter. And while I truly believe most parents mean well, intentions don’t erase impact. Some parents were given fear instead of facts at diagnosis—told their child would never succeed without certain therapies or compliance. I understand that fear. I respect informed choice. But listening to autistic voices must be part of that process.
Is it okay to feel sad? To feel anxious? To struggle with letting go of the future you imagined? Of course. That’s human. But grief is something I question—not because it’s wrong to feel, but because it’s rooted in what society has taught us about disability. We’re taught to mourn differences instead of challenging the systems that make life harder.
What child ever follows the exact life plan we create for them anyway? And are we truly sad for our autistic children—or are we sad because of how we know society will treat them?
Maybe that’s why I became that mom. Because when diagnoses entered our lives, I reframed everything. My children are exactly who they’re meant to be. They are on their own paths, and I’m honored to walk beside them. I’m exactly who I’m meant to be, too. It’s okay that I struggle where others don’t. I’m not lazy. I’m not broken. I’m autistic—and now I finally understand myself. And I couldn’t be prouder.
As a mom, I still have hard days. I still feel sad sometimes. But when I really examine why, it’s almost always because of society—because of rigid expectations, careless words, or systems that demand conformity instead of compassion.
Some of the most successful people in this world have disabilities. And that fact? That absolutely rocks my socks.
