Personal Story

How My Son’s Autism Diagnosis Led to Uncovering My Own Undiagnosed Autism

adult autism diagnosis"
adult autism diagnosis
Source: Canva
Source: Canva

When my eldest son was just 2 years old, I started to notice some typical symptoms of autism. He repeated certain words and phrases, lined up toys just so, and had some trouble with social skills in a way his peers did not. In order to get our son the services and support he needed, my husband and I knew it would be essential to get an official autism diagnosis so we could sign up for programs and aides. It took us almost a year to receive the official label from a therapist, after going up against many doctors and specialists. Even family members thought that because he was intelligent he couldn’t possibly be autistic. But in that year—and leaning on my previous work with autistic adults—I learned so much about autism spectrum disorder. I also realized that looking at my son was like looking in a mirror.

Autism spectrum disorder is underdiagnosed in women. For every four males diagnosed with autism, only one female is, and experts hypothesize that it may be because autistic traits appear differently in females. For example, research suggests clinician bias could be part of the story because autistic girls tend to have special interests that align with “typical” female hobbies (like books, animals, or pop culture). To date, the vast majority of research done on autism focused on young males.

I began considering the possibility that an adult autism diagnosis might be a possibility for me and these were the signs why.

Four Signs of Autism I Noticed in My Child and Myself

1. Sensory Processing Difficulties and Sensory Overload

Like many moms, in the early toddler stage, I signed us up for a weekly mom and me music class. Little did I know it was going to feel like slow torture as kid’s music blared in the background, banging on drums, and running all over the place with little organization. A few minutes into the class I could see that my son was uncomfortable and that his behaviors didn’t line up with peers his age. I started picking up how we both had sensitivity to sound, light, and chaos like in a child’s music class.

Seeing noise affect my son reminded me of the times I hid in my basement because it was the quietest and darkest space in my home. Not having space to self-regulate can lead to meltdowns.

I also was super particular about clothes—and still am. The lightbulb moment for me was when my husband and I were dressing our eldest, he would refuse to wear anything with a fleece texture, no sweatshirts over T-shirts because inevitably it caused meltdowns. And my husband would ask what was wrong or think that he was exaggerating how upset he felt for attention like some kids do. I explained to him my hatred for jeans until high school, how I couldn’t wear flip-flops as the feeling of them between my toes was painful, and how it took hours to fall asleep because I couldn’t feel comfortable in my bed. It even got to the point where I needed to use a small vacuum to make sure my sheets felt okay between washes. 

2. Social Communication

We live in a society where nuance is everything, but many autistic people like myself, can find that we really struggle with the social aspect of life. In school, I had difficulty making and keeping friends, and would often be teased because I took everything so literally. When I noticed similar situations play out with my son on the playground with other kids, as well as concerns from his teachers I started to realize that what is normal for us, wasn’t for others. And while we love our son unconditionally and don’t want to change him, this concern pushed me to find more answers.

I was raised in a proud immigrant American family who taught me how to act, and it was difficult for me to adapt my behavior to fit in with kids in the public school. While my parents taught me to be respectful and follow rules, I took that concern very literally and lost many friendships because of my struggles with understanding how to adapt in various social settings.

adult autism diagnosis
Source: Canva

3. Eye Contact

Lack of eye contact is another autism sign. Looking back, I realized it took me at least five years to learn that my father-in-law had blue eyes because I refuse to look most people in the eye. But when I noticed my son not making eye contact it reminded me of all the times I got in trouble in my family for not being respectful because of it. 

4. Special Interests

Many people with autism tend to have a special interest, which is kind of like a hobby that you are obsessed with. My son’s love of his special interest helped me see my own and recognize them for what they are. 

I noted my own tendency to obsessively read up on topics that I’m passionate about—for me, adoption issues are my special interest. In my free time I read research papers, I started talking about adoption in multiple videos a day on social media, I created a podcast, and wrote several books and essays about the subject because I find it so engrossing. Many more autistic people are learning how to utilize their special interests to excel at jobs where we can utilize our knowledge and expertise.

While some people love and enjoy certain subjects, it’s important to remember that special interests tend to be obsessive and engrossing, and can cause anxiety if we are redirected or cannot engage in our special interest for extended periods of time. There used to be a lot of stigma around special interests because they were seen as a hindrance, but more professionals are incorporating them as leverage when teaching at school or learning new skills in therapy. 

What to Do After Noticing Symptoms of Autism in Yourself

Editor’s Note: Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical or mental health condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this article.

After noticing these few different symptoms of autism myself, I began the journey to fight against ableism and the idea that something was wrong with me. I was worried that people would think I was weird if I tried to get an adult autism diagnosis for myself, so it took me a few years to work up the courage to ask about a diagnosis. Without my son’s experience, I probably never would have realized.

I knew I needed to at least try to find someone to evaluate me. So a few months ago I reached out to my therapist and brought up my concerns. I was then scheduled for an array of tests like the Adult Diagnostic Observation, second addition (ADOS-2), and the Adaptive Behavior Assessment System, third addition known as the ABAS-3.

The testing takes a few hours and it’s important to see a provider you are comfortable with who is familiar with diagnosing adults with autism, particularly females. While testing and services to help autistic people have been progressing, it is still very time-consuming and often expensive, which is why many people have been self-diagnosing. I personally self-diagnosed but did not feel comfortable sharing my adult autism diagnosis publicly until I had my team of medical providers confirm my suspicions.

A diagnosis may seem silly to some so late in life, but it’s important for those with any disability to be able to access care and be able to advocate for themselves better. A diagnosis gives insights into how we act and view the world. Having my adult autism diagnosis was the validation I needed to walk in the world with more awareness and be able to better advocate for my son and myself.

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