A Parent's Journey with Autism Spectrum Disorder: Early Signs of ASD, Finding Help and Support and Getting Answers

Casandra Oldham, Director, Autism Programs, Thought Leadership & Innovation Foundation (TLI), shares her experiences as a mother of two children with autism spectrum disorder (ASD), Gareth currently age 20 and Korlan currently age 18.

This is the first Blog in a new series of monthly Q&As where Casandra relates her real-world perspectives and the highs and the lows of her autism parenting journey. She also shares stories of overcoming barriers to accessing healthcare services and advocating for her autistic children.

Casandra is open to receiving questions and concerns of parents who are struggling with similar issues, especially as youngsters with autism age into adulthood. TLI invites readers to connect with the Autism Knowledge Gateway (AKG), a centralized hub consolidating over 40,000 peer-reviewed research articles on autism-related medical care, and reach out with topics you’d like to see on blog.

Q: Casandra, can you tell the readers some of the early signs that made you concerned about your child’s development? How did you navigate your feelings and decide to seek help?

A: When my son Gareth was 20 months old, we moved to a new neighborhood and I quickly joined a moms’ club to get him into a playgroup. There were two other children around his age that lived nearby—a girl one month younger and another child the same age.

At first, everything seemed fine, but over time, I noticed subtle changes. Gareth wasn’t engaging with these children the way he once did and his development seemed to plateau.

After about a month when new skills failed to emerge, I noticed something more concerning: Gareth wasn’t communicating with others. It wasn’t just a quiet day here or there—his language seemed to be regressing. I brought it up to my mother, but she brushed off my concerns.

Around this time, Gareth was enrolled in a preschool readiness program. In December, his teacher called me to discuss some of her concerns. She mentioned that Gareth wasn’t following directions as he once did and suggested we get his hearing checked. She also recommended that I pause his enrollment and re-enroll him in September. This conversation confirmed my gut feeling that something wasn’t right.

Q: Was there a particular moment you realized it was time to seek help? What did you do to take the first step?

A: Hearing the teacher’s observations gave me the push I needed to take action. I scheduled an appointment with the pediatrician to discuss Gareth’s regression, failure to follow directions and decreased speech. During the appointment, the doctor recommended we take him for an evaluation at the Kennedy Krieger Institute (KKI) in Baltimore. He suggested it might be a speech issue but made a point to say, “It’s not autism.”

That statement stuck with me. At the time, I didn’t think much of it, but in hindsight, it’s clear that Gareth’s regression hadn’t fully progressed to the level it would a few months later. We couldn’t get an appointment at KKI until May, but by then, it was obvious—Gareth was easily diagnosed with autism.

Seven months later, I started noticing a similar shift in my younger son, Korlan. His attention seemed to wane and his developmental progress plateaued. I mentioned my concerns to Gareth’s therapists and teachers, but they dismissed me, saying I was being overly cautious. Unfortunately, my instincts were right.

Over the next two months, Korlan lost all his words, stopped clapping, avoided eye contact and no longer pointed. By the time he was diagnosed, it was clear he had regressive autism, caused by acquired mitochondrial disease linked to environmental toxins.

Q: Can you reflect on the start of your journey and provide advice for readers who may now be in this stage of parenting?

It’s heartbreaking to think that this might have been preventable if Gareth’s doctors or teachers had known more at the time. The guilt of not recognizing the signs sooner or understanding their implications weighs heavily on me. However, this journey has taught me the importance of trusting my instincts and advocating fiercely for my children, even when others don’t see the urgency.

For other parents facing similar concerns, my advice is this: don’t ignore your gut feelings. Seek help early and persist until you get answers. Early intervention can make a world of difference.