How to advocate without being an @sshole

Yes, it IS possible

Photo by Jakayla Toney on Unsplash

I used to run a mile to avoid confrontation. Literally. I once crossed the road, stepping directly into traffic, to avoid a certain person! I have swallowed resentments and people-pleased my way from childhood through early adulthood.

But when I had a child of my own, I couldn’t afford to do that anymore. There came a time early on when I needed to step up to bat for Carson. My first attempts at advocating felt extremely uncomfortable, to say the least. At times I felt like a bitch, a pariah. Moms, and women in general, are judged harshly for asserting themselves. Even in the year 2025. But when you have a vulnerable or disabled child, you have no choice. They are counting on you to be their voice.

To advocate is defined as “to publicly support or suggest an idea, development, or way of doing something.” So, not so ugly and confrontational, after all.

As a parent to a teen who was diagnosed as a preschooler, I feel like an old hand when it comes to advocating. As a newly diagnosed adult, however, I sometimes struggle knowing when and how to speak up for myself. I still worry what people will say. Who does she think she is? Why should she get special treatment?

No one wants to be that guy. Over the years I’ve learned that advocating is an art form, and that it is possible to advocate without being an asshole. But like any art form, it takes practice to get better at it.

The main thing: when we don’t speak up, everyone loses. Our kid’s needs aren’t met. Our own needs aren’t met. This is how bitterness brews and festers. We need to advocate if we want others to learn and do better.

When Carson was first diagnosed, it was a different era. Every report and evaluation I received dwelled on “deficits.” The medical model of autism is designed to address challenges, I get that. But as a parent, that negative bias was crushing. At intake meetings, I longed to redress the balance. I longed to create a picture of my child as a whole person, and made a point of accentuating his positive traits and unique personality. And I welcomed suggestions from professionals on how to leverage those strengths.

Having to constantly educate everyone you come into contact with is exhausting. I wonder if all this advocating contributes to so much of autistic burnout... Still, the work is necessary. No one knows you or your child. It helps to start with the assumption that everyone—teachers, principals, doctors, therapists—has your best interest (or your child’s) at heart.

Even though I’ve met my share of ignorant and incompetent folks along the way, I’ve tried to maintain a calm and professional front. But there’s always someone who doesn’t get it. A worker at Carson’s school comes to mind. From the get go, he rubbed me the wrong way. He made certain cracks about my child’s character that I did not appreciate, let’s say. I tried to remind myself that not everyone comes to the table with the same information.

Publicly, I carefully corrected this worker, who I began secretly referring to as “Douche.” Privately, I let loose and ranted to my husband and therapist because I had to—but never within earshot of my kid. The last thing I wanted was for Carson to call the man “Douche” to his face! It’s important for kids to show some basic respect to adults, I feel, even though those seemingly don’t deserve it. In public, I kept things civil because, as much as it pained me, I had to continue dealing with “Douche” for the foreseeable. And who knows, he probably had a less-than-delightful nickname for me, too.

Once things turn adversarial, there is no coming back, and your child is the one who suffers.

As obvious and corny as it sounds, I sometimes pretend that everyone in my kid’s life (yes, even Douche) is on the same sports team. Now, I hate sports, but bear with me here... We don’t have to like all of our teammates—and they may not like us—but if we want to win, we have to remember that we’re on the same side.

When communicating in writing, I get someone impartial to check my tone. I write for a living, but my direct autistic communication style can be misread as hostile even when it’s neutral. I make a point of thanking everyone for their support and acknowledging that it’s not always easy. Because it isn’t. Then I invite others to share ideas so we can brainstorm solutions together. It feels a bit laboured at times, yet I’ve had some major wins with this approach. Yay, team!

The reality is, a lot of people (even those who aren’t “douches”) will naturally opt for the path of least resistance. They are tired. Or they frankly don’t care enough to do the right thing by you or your child. That’s why it’s important to document everything, cc-ing anyone relevant, be specific with timelines and follow up on any points that need following up on. May your paper trail be long…

Above all, know your rights. Involve your child in the process. Model how and when to speak up and how to do it tactfully. A lot of people assume you have to be pushy to get what you want, but I think that is so far off the mark.

Recently, my 16-year-old has been doing more advocating for himself, and I couldn’t be prouder. He has met independently with the principal and with teachers to come up with a plan together. Obviously as head coach I’m still involved in more major decisions, yet where possible I am letting my teen step up to the plate. Douche is still on the team, regretfully, but he no longer plays a key position. (Sorry—that’s the last of the baseball analogy, I swear!)

Whether they use mouth words or AAC devices, it’s so important to teach kids how to communicate when they need a break, can’t do something, or feel uncomfortable, etc. And when they do, as parents and practitioners we need to listen and respect what they’re saying, even when it doesn’t suit us.

We want kids who can assert their needs, not ignore them or push through the way many of us did. That kind of compliance is dangerous and opens our kids up to abuse…the way it did for many of us growing up.

Advocacy may never come naturally. Some part of me will probably always feel slightly sickened by confrontation. But I am getting better at it. God knows I’ve had a lot of practice. And Carson will, too. He will have to. I won’t be around forever. Knowing he can advocate for himself in some capacity helps soothe this mamma’s anxious heart.

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What do you find hardest about advocating? Any success stories? Please share—we can all learn from each other.

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