A Parent's Journey with Autism Spectrum Disorder: Part 3
Sharing the Diagnosis, 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.
In this monthly Q&A series, Casandra discusses the emotional and practical aspects of sharing her sons’ diagnoses with family, friends and her broader support network.
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 also invites readers to reach out with topics you’d like to see covered on this blog series.
With the launch of the Autism Knowledge Gateway (AKG), parents, physicians, researchers and scientists can access a centralized hub consolidating over 40,000 peer-reviewed research articles on autism-related medical care.
Q: Casandra, sharing a child’s autism diagnosis can be a difficult step. What was your experience like when you first shared Gareth’s diagnosis?
A: When Gareth was diagnosed, life was already hectic with three young children. Sharing the diagnosis wasn’t a formal or monumental event—it just felt like one more task to check off the list.
At the time, my parents were living with us, so we had to coordinate childcare for my youngest son while I took Gareth to his appointment. I thought the hardest part of the day would be juggling those logistics. I was completely unprepared for the emotional weight of the diagnosis.
Driving home, I was overwhelmed and in tears. I called a close friend for support, but she was busy. I tried another number and eventually reached a woman I’d only met at the gym a couple of months prior. That call turned out to be life changing. She recognized the term “PDD-NOS” and told me it was a form of autism. She also connected me with a Board-Certified Behavior Analyst (BCBA), who helped me set up Gareth’s first home ABA (Applied Behavior Analysis) program.
Looking back, it was such a “God moment.” This woman, who I barely knew, was exactly who I needed at that time.
Q: How did your family react when you told them about the diagnosis?
A: When I got home, I told my parents first. They had been helping with the kids that day and knew I was concerned about Gareth. My husband wasn’t home yet, so I left the paperwork from the hospital at his seat in the kitchen for him to see.
None of us really understood what the diagnosis meant at the time. We were still processing everything. It was a lot to take in, especially since we had only been living in the area for a few months and didn’t yet have a strong local support network.
Q: You mentioned that you were new to your community. How did that affect your ability to find support?
A: Being new to the area made it harder. I had joined a moms’ club, a church, a Bible study and even started teaching fitness classes at the local gym to build connections, but my friendships were still in their early stages.
When my youngest son, Korlan, regressed and was later diagnosed with autism nine months after Gareth, my mental health took a hit. The stress and desperation I felt strained many of those budding relationships. My circle became much smaller, and my entire focus shifted to getting my boys the help they needed.
Q: How did you cope during this time? Were there any resources or strategies that helped you?
A: Local support groups became my lifeline. I attended as many as I could and leaned heavily on parents who were further along in their journeys. These moms and dads understood what I was going through and offered practical advice, emotional support and hope.
I always tell other parents that their most valuable resource is other moms and dads who have already navigated these waters. They taught me so much—how to advocate for my kids, what therapies to pursue and even little tips for daily life. I’m forever grateful for those groups and the parents who shared their experiences with me.
Q: What advice would you give to parents who are struggling to share a diagnosis or find support?
A: First, know that it’s okay to feel overwhelmed. Sharing a diagnosis is an emotional process, and it’s natural to feel unsure about how to approach it.
Here are a few things that helped me:
Build a Support Network: Even if your circle is small, find people who can provide emotional and practical support. Don’t be afraid to reach out to parents in support groups, churches or community organizations—they understand what you’re going through.
Educate Yourself: Understanding your child’s diagnosis can help you communicate it to others more confidently. Resources like the Autism Knowledge Gateway can be a great starting point.
Take it One Step at a Time: Sharing the diagnosis doesn’t have to be a big event. Start with those closest to you and don’t feel pressured to explain everything at once.
Lean on Other Parents: Connecting with families who’ve been through similar experiences is invaluable. Their advice and understanding can make a world of difference.
Q: Looking back, what would you have done differently when sharing Gareth’s diagnosis?
A: I wish I’d given myself more grace and time to process the diagnosis before trying to explain it to others. At the time, I felt an urgency to share what I was learning, but I didn’t fully understand it myself.
I also wish I had reached out for support sooner. It’s easy to feel like you have to handle everything on your own but leaning on others—whether it’s family, friends or support groups—can lighten the emotional load.