That’s “Autistic” with a capital “A,” thank-you-very-much: 5 Things I Wish I Would’ve Known When We Got Our First Diagnosis

By Brittany Noble Charek

A decade ago, my son was diagnosed with Autism Spectrum Disorder. I was a young, single mother going through an ugly custody battle, trying to start a new career and a better life. 

People close to us told me what a “normal” kid H was and encouraged me to get a second opinion. In retrospect, going through the process all over again just delayed my own acceptance of the inevitable, but that’s the thing about acceptance: it’s a process, and everyone has their own hurdles along the way.

Since then, I’ve gotten married, had another child and processed another diagnosis, which has been a journey completely different than the first. Echoing Rod Stewart, there’s so much I know now that I didn’t then, but if I had to narrow it down, here are some things that would have brought some comfort to my former self:

  1. Autism is a spectrum

Autism is known as a “spectrum” disorder because there is a wide range in the type and severity of symptoms people experience. What we now know as ASD according to the DSM-5 was categorized as five different types of autism before 2013: autistic disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS), Asperger syndrome, Childhood Disintegrative Disorder and Rett Syndrome. Experts moved toward a single diagnosis for this huge range of symptoms because research showed that these categories were not reliably diagnosed.

Some people have severe deficits in verbal and nonverbal social communication skills and require substantial support from caregivers throughout their entire life. Many are able to live independent, successful lives with some extra support for social and emotional goals. As Stephen Shore, a doctor of education and clinical assistant professor at Adelphi University’s College of Education and Health Sciences in New York puts it: “When you’ve met one person on the autism spectrum, you’ve met one person on the autism spectrum.” 

  1. Your disability is not your identity, but it can be if you want it to be.

Another special needs parent sold me on the idea of “Person First Language”: this idea that a person “has Autism” rather than “is Autistic” and how the language used to describe them should reflect them as a whole person rather than identify them by their disability. This trend was really popular among parents, educators and advocates at the time and I could see its good intentions. 

But here’s the thing: Autism isn’t something to be ashamed of — it’s something that needs normalized, especially considering how much more often it is being diagnosed than in previous generations. According to the Centers for Disease Control & Prevention (CDC), Autism affects an estimated 1 in 54 children in the United States today.

Insisting on language such as “person with ASD” over “Autistic person” denies the child the right to include Autism as part of their identity. On the other hand, insisting on identity-first language assumes the disability is part of their identity. The crux of the problem is that we’re talking about children. They are the ones who will ultimately decide on their identity, but that takes time. 

One thing is for sure: the split about this in the Autistic community (see what I did there?) demonstrates that parents prefer person-first language, and self-advocates prefer to identify as Autistic.  Just like with pronouns or other identifying markers (LGBTQ+, Black, Deaf, Latinx, etc.) it’s always best to ask a person their preference, including capitalizing that A.

  1. Remember the power of positive parenting

Family life can be so hectic that it’s easy to forget that on top of caring for your children, you’re also supposed to be parenting them and setting an example. My husband and I were fortunate to be able to go through the Triple-P program through Akron Children’s Hospital when H was a frustrated preschooler throwing temper tantrums. We sat with a therapist every other week and discussed “parenting traps” that were so easy to fall into. We learned how to implement time outs, and we reminded ourselves to tell H what he should be doing instead of yelling at him to stop. We gave specific and genuine praise for good behaviors, and we learned what negative behaviors to ignore. It was tough, but it created mindful habits that have benefited not just my home life but have had a positive effect on basically every aspect of my life. 

  1. Doctors are not infallible, but they give really good advice that is based on research.

The first developmental pediatrician we were referred to told me: “Don’t let anyone tell you he has Autism. He’s got great eye contact!” I took this as Gospel truth, and it wasn’t until a third opinion confirming a second opinion did I begin my journey to acceptance, understanding and pride.

Looking back, I’m embarrassed about my denial of H’s diagnosis all those years ago. It’s silly that I was embarrassed about my kid not being “normal” or having “special needs.” Most of the things I love about him most are directly tied to his Autism: his creativity, his sincerity, his honesty. 

  1. H is doing just fine.

Being sent home from the Cleveland Clinic with a mountain of paperwork and treatment recommendations that I’d never be able to afford made me feel like I already failed my child. If I could’ve time-traveled to meet the sweet, intelligent thoughtful big brother that he’s turned out to be today, all that anxiety would have washed away. 

Sure, there are struggles, but parenting is always hard whether your children are neurotypical or not. I was pretty sure that he was never going to learn how to read (the English teacher’s son — illiterate!! — how embarrassing!), but one day it just clicked. Because of his IEP, he was exempted from the State’s Third Grade Reading Assessment, but he had the confidence to take it anyway — and he passed. He’s grown in so many ways beyond academics. To be completely honest, he’s handling this whole pandemic thing better than anyone else in our family!

You can only do what you can. You only know what you know. Just like our children, we as parents have the ability and responsibility to continue to grow.

Brittany Noble Charek is a writer, educator, and mama bear with a lot of feelings. She no longer gets embarrassed when caught talking (or singing!) to her dogs and/or houseplants.