Understanding Autism: my family’s journey

Let me tell you about my daughter.

She’s 12, she loves dogs and the color purple. She participates in dance, 2 kinds of choir, and band, and her favorite treats are Nerds Gummy Clusters and apple juice. She’s bright, fierce, and independent. She also has Autism & ADHD.

We’ve known her whole life that there was something “different” about her – I can recall her being 2 years old and us talking with her pediatrician about some things we had noticed, but the pediatrician laughed it off as toddler behavior. I don’t blame her – even 10 years ago, it was uncommon for girls to be diagnosed with ADHD and/or Autism – at the time, most folks seemed to think it was more of a “boy thing”.

I can recall the day I realized it was ADHD and the relief I felt at having a better understanding of what she was experiencing. I don’t have ADHD, but my husband does, and so does my brother, so I have lived with ADHD in my home my entire life. I’m grateful for the partnership we have with her doctor in getting diagnosed and treated.

About 6 months later, we were on a big family trip, and I had been able to tell for a few days that something was not right. There we stood, on Main Street USA at Disney World, and my kid was having a full meltdown. Screaming, crying, refusing to leave…. It was not a magical experience, but just a few hours before, she was more than happy to sit on the grass, playing with her Rubik’s Cube near Cinderella’s Castle. A few days later, we were on the beach, hunting for shells, and she was as happy as I had ever seen her. We traveled for 10 days on that trip, and I got to see very closely the small pieces that were putting together the puzzle. We realized that taking her out of her regular routine was triggering her, and that being in a loud, crowded area at Disney World had made it worse. I started calling around for a referral to get an Autism Evaluation the day after we got home.

Between the time of the call and her evaluation, I dove into researching autism in girls. I learned so much – I was shocked. Autism & ADHD in girls looks very different from what it does in boys, coupled with the way girls tend to be skilled at masking their symptoms. (“Masking” is a term that means covering up to seem more neurotypical.). This means that if/when a girl gets diagnosed, it’s typically much later in life. In fact, up to 80% of women are undiagnosed or misdiagnosed by the age of 18. I personally know more than a couple of women who were not diagnosed until they were in their 30s and 40s. I have also started following a few Autistic creators on social media to see their perspective on a variety of topics.

My kiddo has Level 1 Autism, which used to be called Asperger's Syndrome. This means that she is considered to have the mildest form of autism. She does not need an IEP for school, but we have to talk a lot about picking up on cues and social interaction, and she has a hard time deviating from her routine. I have also spent countless hours in the last year identifying triggers and working with her on what I would call “nuanced situations”, where she has to pay closer attention to things like tone and inflection to understand what’s happening around her.

I was never disappointed or upset by her diagnoses – I was relieved. I finally had a clearer understanding of what my kiddo was experiencing. Thanks to the many books and other resources available, I spend a lot of time learning more about them, so we can navigate them as a family.

I’ve chosen to share a glimpse into our story now, since April is Autism Awareness Month. I think a lot of folks still have a lot of pre-conceived notions about what Autism is and is not. There’s so much that has been learned about it, even within the last decade. I appreciate you taking a few moments to learn about our experience with it.