When people hear the word “autism,” they often picture a single, extreme narrative. But for Jennifer and fellow mother and advocate Carolina [pseudonym], the reality of Autism Spectrum Disorder is as vast, varied (and beautiful) as life itself. In this candid, deeply moving conversation, the two women sit down to discuss raising children on the spectrum, navigating the hidden grief (and relief) of diagnoses, and how the unique worldview of their kids has fundamentally reshaped their own patience, empathy, and perspective—for the better.
(Welcome to Part 1 of our three-part series exploring the realities of Autism Spectrum Disorder through the lived experiences of two moms proudly walking the path with their children.)
Jennifer: Even though there’s a greater awareness of Autism Spectrum Disorder, and that it’s a developmental disability that affects both children and adults, there are still so many misconceptions as to what it truly is.
Carolina: It affects so many people. And I feel like every time the DSM-5 updates, the term gets broader and broader, which is both good and bad. There are different levels, as you’re aware.
Jennifer: Yes. How old were your kids when they were diagnosed?
Carolina: My son was diagnosed at two and a half. My daughter was never diagnosed back then; she was diagnosed with a speech delay. She was shy, clingy, and masked her symptoms. It wasn’t until my son got his diagnosis that she felt comfortable unmasking, and she got her ASD diagnosis around seven and a half.
She missed early intervention because she didn’t have a clear diagnosis yet. As she got older, that gap grew. When my son came around, I had a heads-up and got him into early intervention immediately. Seeing the attention he got made her let her guard down too. It’s unfortunate you need all these diagnoses before getting proper help.
Jennifer: It’s reported that boys are four times more likely to have autism than girls, according to the Centers for Disease Control and Prevention.
Carolina: That’s what they say. I think women tend to mask more. We’re brought up to try to fit in, be polite, and not be blunt. When someone on the spectrum is blunt, a man is fine, but a woman gets a bad rep. Our expectations are different—we’re supposed to be smiling and friendly. I’m guilty of—
Jennifer: Absolutely. When I started on the journey with my son, it was explained to me that ASD is a huge spectrum and every single person in the world falls on it. Some might be here, others there, but it’s not just specific to a certain population. It is everybody. Everything is a spectrum, and we are all on all of them at some point.
Carolina: I agree. As your children get diagnosed and therapies start, you join them, learn more, and you look at yourself and think, “Hmm.” You see they inherited this from me. The degree might be the same or different, but you get that perspective and it helps you understand yourself a little better as well.
Jennifer: In understanding more about my son, I saw parallels between him and my dad. And as he has gone through his journey, I became much more self-aware without even realizing it. I thought, “Oh yeah, I have a problem getting out of the house too,” or “I struggle with anxiety with new situations, too,” and “It takes me longer to process things, too.” In a way, it was comforting because things started to make more sense.
Carolina: That empathy really opens up once you realize they have similar struggles—again, not to the same degree. You approach your child and try to give them your perspective and pointers to help get over that little hurdle. They take it or they don’t, but at least you offer it. Hopefully, they learn for themselves and say, “Oh yeah, Mom had a point.” That’s the goal: you hope one day they’ll ask, “What would you do in this scenario?”
Of course, my daughter is like, “What does Mom know?” She’s still in that stage of: “She’s too old, she doesn’t understand it.”
Jennifer: [laughs] Yes. With my son, it’s been much more of a bonding experience because I can relate on a level that maybe others can’t. I can help him, and he helps me. I’m sure you’re on the same page with this innate knowing that people with autism are just magical. The way they think and see the world opens up our minds, and how they see things unlike how everyone else does. And that’s a good thing.
Carolina: Oh yeah, they have a unique perspective. Sometimes I find myself losing sight of certain things and taking them for granted. You see the world through their eyes, and it’s a nice thing not to lose. I’m quick to run around and do things and miss beautiful moments, but because of them, I have to slow down to their level and routine. That gives me a moment to appreciate things more.
Jennifer: Self-care is so important for any parent, but when you have a neurodivergent child, the need for it increases exponentially. What do you do to recharge, and how often are you able to?
Carolina: It is 100% important. A lot of parents like us have a hard time finding it because they don’t have a support system. I have a very limited amount of people I trust with my kids, mostly because if anything goes wrong, it could be traumatic for them.
For me personally, self-care can happen after the kids go to school—washing my hair or binging whatever I want. I try to find little moments throughout the day. If my daughter takes 15 minutes to go upstairs and play with her dolls, I’ll binge something on my phone. I stream so much stuff on my cell phone! Watching reality TV like Housewives is an escape from reality.
Or if I get lucky and can go weed my garden beds or water plants in the evening and get fresh air, those are the moments I recharge. Simple things like going to the store to buy a pair of shoes—though my daughter is the exact opposite of a shopper!
The other thing I do is take a nice convertible drive. If I’m by myself, I do a little more spirited driving. That takes me back to a simpler time and helps me relive my youth. My kids notice it right away and say, “Mom, you’re happy!” They notice your energy.
But I’m very blessed. My husband takes the kids or one of them to give me a moment. And my kids are routine-oriented—they go to bed early. Once lights are off and doors are closed, that’s our time. We’ll watch a movie or do stuff at home.
Jennifer: I love that restorative time for you is made in the moments. I think that if parents try to schedule a block of time—let’s say 2 hours at night—that can put pressure on them to relax, and that’s the opposite of self-care!
Carolina: Even in the evenings, I shower at night and take a little longer. My husband thinks I’m nuts, but I’m just washing away the day—all that negativity and self-doubt. Whatever went wrong, tomorrow’s a new day. I take a shower, it’s all gone and I keep looking forward.
Jennifer: It’s your hard reset. And it’s important for your kids to see parents practicing self-care. It makes you a better parent and models for them that they need downtime too.
Carolina: They need to know that we all need downtime. As a parent of two special needs kids who depend on me, it’s challenging. I’m very blessed they go to sleep early.
Jennifer: What have you learned about yourself specifically raising a child with autism?
Carolina: I see some of my son’s OCD tendencies in myself—things have to be symmetrical, I can’t function with clutter. I also see ADD/ADHD traits because I juggle a million things and never complete them.
And through them, I’ve definitely become more patient, moving at their pace. I’m not a routine-oriented person; I used to be the type to say, “Give me work, put me in the corner, and don’t bother me.” You can’t do that anymore; you have to drop things at a moment’s notice.
I’ve had to learn to give constant positive reinforcement. I physically have to hold my son’s hands more, and with my daughter, hold her hands through words and constant reassurance. I’ve had to control my facial expressions because I don’t have a poker face, and if I’m concentrating or take off my glasses, they assume I’m angry.
Jennifer: For as much as people with autism tend to struggle socially, I have found that they are more aware of people’s feelings and emotions than experts might have you think. My son is 25 and struggles with the social aspect, but he is acutely aware of human nature—he has this wonderful ability to analyze situations and nail human nature with very few words. They are keenly observant.
Carolina: Extremely observant. I’ve had to start noticing things because of that. When my husband comes home stressed, I have to pull him aside and say, “Lighten up, it’s affecting the children,” because they think you’re talking about them. We’ve had to tone down conversations and political debates because it drives up their anxiety.
Jennifer: Absolutely. And for all the chaos, that unique lens is ultimately a gift.
Carolina: You see the world through their eyes, and it’s a nice thing not to lose. I’m quick to run around and do things and miss beautiful moments, but because of them, I have to slow down, and in that way, it gives me a moment to appreciate everything so much more.
In a world that constantly demands we move faster, these two mothers are finding grace in the pause—learning that sometimes, the greatest discovery on the spectrum is simply learning how to stop, look, and see the magic right in front of us.
(Stay tuned for Part 2 of The Spectrum Within, where Jennifer and Carolina dive deeper into navigating school systems, building advocacy, and fostering independence.)