Imagine taking your child to a family gathering, and right when it’s time to sing Happy Birthday, the room’s noise triggers a meltdown and your child begins bawling. Or imagine that Tia you love dearly—the one who insists your child “just needs a little more discipline” while watching you judgmentally from across the table.
In the second installment of our three-part series, Jennifer and Carolina dive deep into the emotional undercurrents of raising children with autism—confronting the heavy weight of parent guilt, the necessity of setting strict family boundaries, and the relentless vigilance required to keep children safe in a world that often misunderstands them. From dealing with unsupportive extended family dynamics to protecting kids from outside trauma and unequipped environments, this conversation sheds light on the fierce love and boundaries it takes to be a true advocate for your child.
Jennifer: So we have talked about parent guilt, relationships, cultural norms, and stigma. I know personally across many cultures, autism and neurological is sometimes a new concept for families, and they think, “Oh, it’s okay, they’re just shy, boys are active, girls are quiet.” What would you say to parents where there’s a denial or a deep misunderstanding of their child’s diagnosis?
Carolina: I’ve had to cut family members out of my life, not because of my children, but because of their negativity. I really shelter my home—that’s my safe space, my children’s safe space.
Now, for family members you don’t want to cut out—like grandparents who don’t honor your children or believe in mental health—what I’ve always done is host holidays at my home. Not because I want the work or the headache, but because I want to make sure my kids have a secure place where they can take a time out and go to their rooms. As a mom, you put so much pressure on yourself to make the holidays perfect, keep the house immaculate, and be the hostess with the best food. But I didn’t do it to host; I did it so my kids felt safe. We used to do every Thanksgiving and Christmas this way. Everyone else thought people just wanted to rotate, and I’d say, “No, you can do any other holiday and we’ll come, but I need those.” Especially Christmas and Thanksgiving, because there’s so much commotion, long visits, and new presents.
Jennifer: I’ve done the exact same thing. Being around a lot of people can be overwhelming, and having parties at our house meant that the kids could go to their rooms if they needed a break from it all—and I could regroup, too. I’ve hosted Christmas at our home every year, though I didn’t fully realize back then that that was the real reason why.
Carolina: Exactly. And if you go to your parents’ house instead, have an escape plan. If you see your child having a meltdown, fake a sudden migraine and make that the reason you’re leaving. Don’t put it on the child. Be aware of cues and escape.
Jennifer: Oh, I love that. It doesn’t put the onus on the child, like, “You’re the reason why we’re leaving.” In addition to already being dysregulated, now they carry the burden of feeling like they’re to blame.
Which brings up a tough dilemma: How do you invite family in without giving them permission to cross the lines you’ve fought so hard to draw? What else can parents do to have their kids around family without sacrificing their boundaries?
Carolina: First, limit your interactions and keep them light. Don’t talk about anything heavy. Parents are very hard to cut out, so if you can limit your interactions or see them without your kids, do that. It’s not fair to put a family member’s problem onto your child. If they can’t accept your child, that’s their consequence.
However, if you have a parent who is really insisting on seeing your child, you have to sit down and have that hard conversation: These are my boundaries. If you cannot honor what you can and cannot say in front of my child, you will not see my child—you will see me. You have to set strong, hard boundaries, give them a complete breakdown of what triggers your child, and make sure you enforce them. If they cross them three times, they’re out. If they’re out of the scene, you do a Zoom or FaceTime and leave it at that.
Another helpful tactic is to point out parallels. If you can find parallels from your parents’ or sister’s lives, point it out to them in a non-confrontational way. If they had a hard time filling out a form or dealt with a jerk back in the day, connect it: That’s probably because of this. Build a parallel so they can see themselves in your child and actually understand what they’re going through.
My parents always instilled in me to be independent and protective of our offspring. My dad used to say, “If you have children, you have to protect them.” That has always stuck with me.