Hi – I’ve been sorting through the mounds of paperwork that come hand-in-hand with raising a child with a disability, and this memory came up. Thanks for reading and/or listening!

I guess I looked like someone who could use some advice.

It’s true that I was feeling a bit over my head. I was sitting in the back of the main speaker’s hall, my lap piled with PowerPoint handouts, brochures from the exhibit room, and a thick conference program full of sessions promising to improve my son’s chances in life.

I was a newbie autism parent, facing what I was told was a rapidly closing window of early intervention, with decisions to make about therapies, education, diets, medical tests, and sensory strategies all demanding to be implemented right now.

The woman who sat down in the chair next to me—despite there being plenty of other seats nearby—clearly had something to say.

I don’t remember how the exchange started. She probably commented on my disheveled stack of notes and offered some commiseration on handling all this new information. I’m sure she asked how old my son was, and I probably said something positive about his potential. 

My boy had been completely non-verbal when he received his autism diagnosis a couple months shy of his 3rd birthday. But within six months, following an intense dive into therapies and nutritional interventions, we heard his first consistent word approximations. By the following year, we were overjoyed to hear him singing pre-school songs and finally calling us Mommy and Daddy. 

I could see the growth in him, and I was throwing everything at him to pull out more. I was eager to follow what the experts were saying at every autism conference I could get to.

And I really wished that this woman next to me would stop talking so I could hear them. As the next speaker stepped up to the podium, my seatmate leaned in and whispered in my ear:

“Just love him.”

She said more, I think, in her soft, condescending tone. Something about not driving myself crazy with all this “unnecessary” stuff. Enjoy him. Just. Love him.

I bristled at her implication that I was not loving my child enough, or in the right way. Wasn’t love the whole reason I was sitting through these confusing lectures full of educational acronyms and medical theories?

I dismissed her as crazy and tuned her out.

“Just love him.”

As if love was all there was to it.

As if love would be enough.

That lapful of scribbled conference notes would grow into a mountain of data sheets, logbooks, school communications, assessments, re-assessments, lab results, IEPs, quarterly therapy reports, and team meeting notes—and yes, I’ve kept them all.

I didn’t follow her advice to “just” love him. I poured my heart into interventions that consumed his childhood and clogged my filing cabinets.

Now, as I sift through all this paperwork I’ve hoarded (um, archived?) over the years, I can see how my son might have felt more pressure than love through all the phases of special education, in-home ABA programs, weekly therapies in clinic and “natural environment” training, not to mention doctor’s visits, medication and diet trials, and a parade of teachers, therapists, and aides.

I guess understand a little more that woman’s motivation to pass on her unsolicited advice. She probably saw an earlier version of herself in me, or perhaps saw herself in my child.

Her whispered words have been amplified in recent years—in the autism community today, people take sides over whether autism is a neurological difference to be celebrated or a profound disability with devastating impacts. Some autistic adults who have found their voices argue with young parents over which approaches they should or shouldn’t use, making things even more confusing for new families. 

The spectrum is wide and there is not one autism, but we still fight over how to treat it and even how to talk about treating it.

This recent Today article describes one front in these “autism wars”—the language we use to describe our families in public forums, which may help us find support but can also shape how we (and others) view our autistic kids. (I’m in the Carrie Cariello camp on this one—parents can find ways to speak honestly about our challenges without publicly degrading our kids or over-sharing intimate details.)

For many of us, “acceptance” vs. “action” is not an either/or decision. We can appreciate our kids’ “quirks” and give them space to be themselves, but you can bet we’re also going to do everything we can to alleviate their pain. 

It’s an easier calculus for those of us who witness the more debilitating aspects of this diagnosis—the self-injury, punishing meltdowns, aggression, communication struggles, and inability to live independently. 

Supporting someone through all that takes more than “just love.”

But I know that my son’s experiences in special education shaped his self-esteem in ways that are not all positive. My support probably hasn’t always felt supportive to him. 

Could some of his current anxieties have been sidestepped if we’d done this therapy and not that one? If I’d listened to different experts? If I’d always spoken to him and about him with ease and acceptance? Perhaps. 

Now I hear “just love him” as a reminder to simplify. Not to ignore what needs to be done, or fret over the paths we’ve taken, but to pay more attention to his mental health and my own as we choose goals and strategies and programs.

When I see the questions from new autism parents at conferences and in online forums today, I recognize their fear and urgency. And, I do have the impulse to tell them to take a breath. 

To stress a little less about potential outcomes, and to simply love a bit more.

They would think I was crazy, I know.

(Which reminds me of another story…that I’ll tell you…next time!)

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit itslikethis.substack.com