When You Have to Insist That Something is Wrong

Welcome to the July series on Positive Adoption: Autism. This month, we’re blogging about Autism, Asperger’s, SPD, and a whole host of related disorders or diagnoses. This post was written by Audrey Simmons. Audrey has two sons in the process of being evaluated and is the older sibling of some boys on the spectrum, as well as hanging out there a little bit herself. This post is half-encouragement, half-processing on the road to diagnosis.

“We’re thinking about having the boys evaluated…” has been a lead-in for conversations about autism at least a dozen times in the past few years for me.

“What? No, they’re fine,” is the answer I get most of the time. Or, just a shocked, “Why?”

I’ve noticed that the older the boys get, the less I get this response, but when I do get it, it’s hard to defend my reasoning without sounding whiny. I think the most important thing to remember is that people want you to feel okay. I need to remember that the root of the response is a desire to reassure, to ease a burden. (Sometimes, there is actual denial or resistance– this seems particularly common among fathers and grandparents, but I’ve not dealt with either case yet.)

So, I know the reaction is often one that doesn’t necessarily encompass my child’s behavior as much as it is an attempt to shield or shelter me from worry, the way one parent might console another who is panicking about a fever or a Web MD “common cold or cancer” symptom-checker scare. I want to insist, but maybe not in a casual conversation, that it is hard. It’s hard to deal with the tantrums, the meltdowns, the screaming, the stimming, the fixations, without diminishing the genuinely hard work other parents do.

But if you’re in this position, you know your kids. I got in the habit of accepting the response and replying simply, “Oh, it’s okay. The idea of autism doesn’t scare me.”

Maybe it still scares you, and that’s okay– you can admit that. But for me it was true. I was more scared of not getting help or direction and that became my answer. A lot of times, just acknowledging that autism wasn’t a scary diagnosis for me seemed to put others at ease.

If you’re on the receiving end, you might find yourself saying the same stuff on autopilot to reassure a friend, especially if her kids seem fine around you. If you hear, “I’m worried he’s autistic,” or “I think we’re having her evaluated for autism,” here are some proposed replies:

“What kind of behavior makes you worried?”
“What things are really hard for you right now?””How do you feel about that?”

If you want to support a friend expressing concerns, this is a great opportunity to actually just let them tell you what worries them. If you are sharing a concern but getting the, “No! He’s fine!” reply, but the person seems genuinely interested or invested in you, go ahead and answer these questions as if they were asked. I just tell people, “I’m worried because…” and share with them (details fluctuate depending on how intimate the friendship is).

A lot of times, parents with young high-functioning autistic kids may seem like they have “normal” children at some brief or shorter meetings or in prepared environments, but also be shielding their kids from a lot or shielding others a lot from their kids, until something unexpected comes up and that shield fails. For me, one moment was when I was still dressing my four-year-old from head to toe because he lacked the motor skills to even dress himself in loose clothing– he showed up at Sunday school and library story time dressed and prepared for those environments. He gets quiet when overwhelmed until he’s really in a meltdown, so he just mostly seemed polite and reserved– until one story time trip when his Sunday school teacher happened to be at the library and tried to say hi to him. The intersection was too much, and he fell on the floor and loudly moaned for several minutes. It was one of the first times people at the library or his Sunday school teacher had noticed, even though the behavior was pretty routine/normal for him.

Sometimes, maybe, we shield our younger kids too much and cut ourselves off from support in an effort to either protect them or protect ourselves. We risk passersby making judgments about our parenting skills or how bright and treasured our kids are. But meltdowns will happen, and eventually they will happen in front of people– with high-functioning kids who are often diagnosed later, they might go for a long time before other people notice. So open yourself up to possible criticism from strangers so you can have the support of friends and family. And then when you’re ready to talk, don’t feel bad insisting that you know something is off. If you need help or moral or emotional support, don’t be afraid to seek it or ask for it– some people might not understand, but you might find allies in surprising places.

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