When your child heads off to school each day, you hope that they get a good grade on their tests, race around with their friends at recess—and maybe, just maybe, bring home their math folder for once. But for parents of children with autism, sending your child to school often means stepping into an entirely different realm of high-stakes advocacy and navigating a system where one size rarely fits all.
In the final installment of our three-part series, Jennifer and Carolina (two moms who fiercely advocate for their children who have autism) tackle the heavy realities of the school system, the importance of fighting for your child’s proper placement, and the broader societal concerns facing the autism community today. From the hidden challenges within classrooms and the necessity of boots-on-the-ground advocacy to the anxieties of a changing political and environmental landscape, this conversation offers a powerful look at what it takes to protect, prepare, and advocate for children on the spectrum as they journey toward adulthood.
Jennifer: For any parent, it’s important to have extra eyes and ears in the school, being in touch with parents and kids, and getting the real story—because information isn’t always shared. And if your child has autism, the stakes are even higher because they may not share if something happened, regardless of what it might be.
Carolina: Exactly. And I feel that’s really important because you need to understand all the different perspectives, since you may not get the full story. But also, sometimes a child is acting up or having difficulties in the classroom because it’s just not a good fit.
I know a lot of parents don’t want to recognize that, especially if their child is having self-regulation issues and being destructive. Typical school districts aren’t equipped to deal with that all day long; they’re there for education and life skills. If a child constantly needs specialized attention, it’s not fair to your child because they’re not getting what they need, and it’s not fair to the other children either. A lot of parents don’t like the idea of sending their child to a more specialized out-of-district school because they feel, “What do you mean, my child?”
Jennifer: That mindset is understandable, but it can also be detrimental for your child.
Carolina: Yes, as a parent, having that mentality sets your child up for failure. If they act out in school later in life, they can get expelled or arrested. You want them to be able to assimilate in a world that isn’t designed for them, unfortunately, and control their reactions as best they can. The goal is to keep them out of jail, keep them out of the hospital, and make sure they are not physical aggressors, because people will take legal action against them when they’re adults.
The sooner you can address those issues, the better off your child will be. If the school isn’t equipped, it’s very important to recognize that and get them into the proper setting. I’ve seen parents have to fight school districts for this because schools are expensive, and sometimes teachers aren’t allowed to tell you the whole context because administration doesn’t want to pay for an out-of-district placement. The more information you have as a parent, the better you can advocate for your child.
Jennifer: What I saw from my experience working in education—and this isn’t representative of all schools—is that some districts may favor the parents over the staff. If a parent doesn’t want to recognize that their child needs specialized attention, administration just wants to push the child through to the next grade. That puts a lot of unfair pressure on teachers and support staff, who are torn between sharing the information with the child’s parents, but then potentially face consequences from the administration.
Carolina: And that’s sad, because if no one tells the parents, the parents remain oblivious and won’t know what to do when it escalates into serious charges in their teen years. That’s why having eyes on the ground is so critical.
We want to instill our kids with everything they need, but society doesn’t want to put money toward it, putting support staff and teachers in a hard place. In affluent school districts, they tend to favor the parents because they don’t want to upset them. In less affluent areas, they might just push kids along because they don’t want to pay to put a child elsewhere. Parents need to be aware of these socioeconomic nuances.
Jennifer: As you know, it’s a challenge to get parents on board. Some parents don’t want to acknowledge there’s an issue, and schools are hesitant to ruffle feathers. But feathers need to be ruffled for the best interest of the child. When a child’s behavior isn’t addressed, it impacts the whole classroom and sets the stage for further escalation.
Carolina: I agree. A lot of parents are in denial because they don’t want the stigma of their kid going to a different school, especially among neighbors or their social group. Everyone talks about their kids’ sports teams and colleges, and when your kids are on a different path, it’s hard.
Everybody wants the least restrictive educational environment, but if a child has behavioral issues that need to be addressed, ignoring them helps nobody. I’ve seen kids go out-of-district for a couple of years, work on self-regulation, come back, and completely flourish. One girl I’m thinking of was very explosive at one point, but her mom nipped it in the bud. She came back, graduated with a Regents diploma, and is winning gold medals in the Special Olympics!
Jennifer: That’s incredible.
Carolina: It’s a group effort. They say it takes a village—for us, it takes a whole state or country! You have to throw your initial picture of what your child’s life would look like out the window, look at their actual strengths and weaknesses, and reframe that picture. You have to be deeply collaborative with educators. You cannot come in on high alert trying to sabotage; you have to work together to find solutions because your child deserves that.
Jennifer: Everyone has a specific role—mom, dad, teacher, therapist—but I think the most important role to honor is your child’s role and how they want to proceed. It has to come from them. If the drive doesn’t come from the child, it’s going to fall flat.
Which brings up another heavy topic for parents today: the broader societal and political landscape. For instance, statements suggesting autism is a preventable “pandemic,” paired with proposals to pull medical information to look for patterns, feel petrifying to parents. As a mom, I can’t even fathom what that scrutiny and targeting might look like in the future.
Carolina: I agree, it’s very scary. It feels like they view our children as expendable when services are defunded and supports are stripped away.
While I do believe there are environmental factors—like pesticides and food dyes—that trigger genetic predispositions, I certainly don’t believe vaccines are the problem. But at the same time, they focus on banning food dyes while deregulating chemicals in our water supply, baby formula, and everyday products. It feels like a smoke screen. I’m really scared for when the dust settles, because our kids are going to be targeted.
Jennifer: The idea of losing hard-won services, coupled with wanting all this data on our kids, feels heartless. And when they blame autism on various factors to claim it’s “preventable,” they ignore the reality that autism has existed forever; we just finally have names and labels for it.
Carolina: Exactly. It’s always been here. I don’t believe they are truly trying to fix the root issues; it’s a guise for something else. They deregulate water, chemicals, and pesticides, yet they claim they want people to have more children. Why would anyone want to bring a child into an increasingly toxic environment prone to cancer and other diseases? We need thoughtful, planned improvements to our food supply, air quality, and water safety that benefit everyone, rather than creating unnecessary chaos.
It would be wonderful if society and leadership moved with a little more thoughtfulness, reducing toxins and supporting families rather than stirring up chaos. But until then, parents remain the frontline shield for these amazing kids.
Jennifer: Thank you so much, Carolina, for sharing your heart, your wisdom, and your journey with us.
Carolina: Thank you. It has truly been a pleasure.