Telling Your Child about an Autism Diagnosis

June 17th, 2020

By Courtney Chavis, ASNC Triage Specialist

I was seated on my daughter’s bed. A few minutes before, she had asked me a question that gripped my heart. “Do I have autism?”

Since her diagnosis near her third birthday, I had imagined all the ways this discussion would go. Now in middle school, she was into theater, movies, and rewriting screenplays. Being a drama queen myself, I was imagining a Vivian Leigh/Scarlet O’Hara/Gone with the Wind display of feelings once I said, “Yes.”

Parents, despite studying your lines and preparing for the moment, you may be concerned about 1,000 things going wrong, too. Let’s ease some anxiety by addressing potential misconceptions about sharing Autism Spectrum Disorder with a child who does not know they are diagnosed on the spectrum.

Misconception: It is on me.

New way of thinking: It is not all on me.

When she asked, “Do I have autism?” I froze momentarily on the eggshells of uncharted territory like her oral surgery or starting a new school. I wanted her to be OK. I wanted it to go so well that I would win an Oscar for Best Delivery of Life-Changing Information by a Parent to a Child. I was prepping for a monologue and that was my misconception.

I never wanted to say the wrong thing or cause a meltdown. I had unrealistic expectations of myself and needed to share this journey with others. You may think, “If I tell her, she will be OK.” Remember Vivian Leigh? Well, she had Academy Award-winning, Best Supporting Actress, Hattie McDaniel. You are not alone, my dear Scarlet. Share opportunities for supporting and shrugging shoulders as everyone figures it out together.

Tip: It is OK to be nervous. Make a list of supportive people to discuss autism with your newly diagnosed or newly aware child. You may have to take the lead or delegate. Who else is part of the cast and crew? Remember, clinicians can share outcomes with the family and the individual during post evaluation/ follow-up.

Misconception: Our conversation about autism must be perfect. This is “the” talk.

New way of thinking: I am doing my best.

When she asked “the question,” it put me in mind of having “The Talk.” Now, an imperfect, awkward sex talk I could reattempt, but I believed if I botched this one, it would scar her for life. That was my misconception.

Maybe we can relax expectations of ourselves, our kids, and others. Everyone is doing their best and nobody is expecting perfect, Oscar-winning performances.

Tip: Concern for your child’s well-being is the most essential aspect and can temper any detail you share. Here is some language you can reference. Let’s also study principles of good communication. Here are some basic expectations in healthy communication.

We all can relate to negative associations with that sex talk both from the giver and the receiver’s perspectives. So, let’s use what it taught us as we approach talking about autism with our children.

The Birds and the Bees taught us to keep it simple. To convey complex concepts, speak your child’s language. Make real references to characteristics of autism. For example, discuss how autism impacts listening to music and sensory processing, etc. Examples drawn from their life may increase their understanding. Don’t feel you need to be proficient in ASD clinical jargon. You may desire to go into detail about neurology, biology, and research. If that information will be useful to your audience, OK. Remember your audience. If drama, documentary, or comedy is your normal delivery, OK.
Share the facts. Don’t gross them out. And, what exactly is autism? As its name implies, ASD is a spectrum disorder that affects individuals differently and with varying degrees of severity; no two people with ASD are the same. People on the spectrum benefit from varying degrees of support. Needing support is not gross. Differences help us rethink self-worth. Different is not less. Finding ways to define ourselves and our children with non-traditional values is a journey.
Don’t rush to get through. There may be some uneasiness. Surprise, just like we needed more than one talk about sexuality, this is a conversation you continue over a lifetime. They may or may not get The same questions may come up repeatedly. Details of a conversation you can never forget may be forgotten by her/him/them. Maybe you are not comfortable disclosing some details about ASD. Some of this discomfort may be culturally relevant and more specific support may be useful. Learn more.
It is what you say AND how you say it. You are not delivering bad news. News of autism is not light and fluffy like a gender reveal. Nor is autism the end of the world. Verbal and nonverbal cues matter. Saying “I love you” can sound reassuring or belittling. Be aware of the tone and body language of a “sit down” conversation. Aim for a “we are moving” tone, not a “I have bad news” tone.

Next steps

Consult an ARS or Chapter Parent
Attend “After the Diagnosis: Get Answers Get Help Get Going”
Consult your supporting cast/team
Read books and articles. Below are a few I recommend.
Set personal acceptance, awareness, and advocacy goals

My daughter and I are in roles neither of us auditioned for, but we got them, and in my opinion, we are winning! Looking back to our first talk many years ago, I can say that hindsight is 20/20. We have had many other unplanned discussions about autism since. As she lives her life, just being there for her through laughs, tears, and everything autism – and not autism – is my honor.