My Kid Is Barely On The Spectrum, & I Feel Caught Between Two Worlds

By Ashley Ziegler 

When she was 3 years old, my daughter was diagnosed and evaluated by a developmental pediatrician, who found that she’s on the spectrum — level one, mild autism specifically. Now she’s nearly 5 years old, and we’ve been navigating this world for a while. And one thing has surprised me: I constantly feel lost in the space somewhere between the parents of neurotypical children, and the parents of kids with autism. I don’t seem to belong in either group. It’s incredibly frustrating … not to mention lonely.

This “outsider” feeling started long before my daughter’s diagnosis was official. As a baby she’d consistently hit her milestones within the normal range, but always at the last possible moment. One of my closest friends had a baby girl two weeks before my daughter was born, and as she was celebrating her child pulling up to stand and cruising, I was elated because mine was finally sitting independently. Then, as they reached the toddler stage, she would vent about her daughter needing constant attention, while I wondered if mine would ever want to show me a toy she was excited about, let alone ask me to play with her.

As she got older, my husband and I observed our daughter displaying more symptoms of autism, like walking on her tiptoes, delayed speech development , and intense meltdowns, among others. Everyone seemed to have an opinion and would say her behaviors were normal, that she’d “probably grow out of it.” We got a lot of unsolicited advice from non-experts on her selective eating (“If she’s hungry, she’ll eventually eat what’s on her plate!”) and her social skills (“She’s just an introvert like her mom!”).

It truly doesn’t matter how hungry she is, my daughter absolutely will not eat non-safe foods. And a 3-year-old who can’t tell you the name of any of the kids or teachers in her classroom is not just an introverted personality.

At some point, I stopped trying to confide in these people about my parenting struggles. Not because they were unsupportive, but because they just didn’t understand.  

When my daughter was eventually evaluated and our suspicions were confirmed — she was on the spectrum — we also learned that if she had scored just two points lower in her evaluation, she would not have met the criteria for an autism diagnosis. Basically, she’s barely on the spectrum, so most people who aren’t close to her probably wouldn’t suspect it. But just because her autism isn’t immediately obvious to people who don’t know a lot about autism doesn’t mean it’s not there.

Equipped with this official diagnosis, I quickly hopped on the internet to join all of the ASD (autism spectrum disorder) parenting groups. I was so eager to find a place where I belonged; just the prospect of it made me feel a little lighter. Finally, I’d have access to people who would understand that my sitting on the floor of Target consoling my daughter who’s having a meltdown because she can’t get a Barbie is not me “giving into bad behavior,” it’s just showing compassion and offering her a safe space to cope.

Unfortunately, it wasn’t long before I began to feel like I didn’t fit into these groups, either. As it turns out, when your child is only two points on the spectrum with a level one, mild diagnosis, you don’t get a whole lot of sympathy from parents of kids with more severe diagnoses.

And, honestly, I get it. When another parent in the group is struggling to cope with the reality that their child may need a lifetime of substantial support, who wants to hear me complain about the inconvenience of my daughter’s refusal to walk barefoot on the cold ceramic floor in her bathroom? Just like the parents of neurotypical kids can’t truly relate to me, I can’t pretend to understand the experiences of many other parents of children on the spectrum.

Fortunately, I have a husband who is willing to listen when I need to fall apart and who never judges me on those days when my patience is thin. I also have an incredible therapist who is always quick to validate my feelings and a handful of friends who will let me vent to them, knowing that I’m not looking for advice.

Still, I’d do just about anything to have a mom friend who could tell me at the end of a challenging day, “I know how you feel,” and actually mean it.