A Parent's Journey with Autism Spectrum Disorder: Part 7
A Parent's Journey with Autism Spectrum Disorder:
Navigating Transitions as Challenges and Goals Evolve Over Time
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Casandra Oldham, Director of Autism Programs at the Thought Leadership & Innovation Foundation (TLI), shares her experiences as a mother of two children with autism spectrum disorder (ASD), Gareth, currently 20, and Korlan, currently 18.
In this monthly Q&A series, Casandra reflects on the evolving challenges of raising children with ASD, discussing how her goals and approaches have changed as her sons have grown. She also sheds light on broader societal and systemic obstacles affecting families like hers.
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 submit topics they would like to see covered throughout 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, as your children grow older, what new challenges have arisen?
A: One of the most consistent challenges has been managing transitions and changes. It’s often said that individuals with autism “like” routine. However, in my experience, it’s less about preference and more about fear of the unknown. Imagine being in a foreign country where you don’t speak the language. Over time, you figure out one route from point A to point B. You stick to it because you know it works—not because you insist on routine but because any deviation could leave you lost, unable to ask for help or understand signs.
For my sons, especially as they grew older, that fear of change became harder to navigate. My neurotypical son could ask questions: Where are we going? Why? What’s next? My sons with autism don’t have that ability, so their anxiety often surfaces as behaviors.
What has changed over time isn’t the behaviors themselves but my ability to manage them. When they were younger, I could physically pick them up and power through tough situations. But now, as full-grown men, they’re bigger and stronger than me. They can drop to the ground, refuse to move or act out in ways that I physically can’t control anymore. That limits where we can go and what we can do. Because of this, their world has gradually shrunk.
Instead of making plans to take them out, I find myself planning to arrange care so they can safely stay home. I think this is why you don’t often see individuals like my sons in public. Society may talk about awareness and acceptance, but it’s not built to support people with severe ASD in day-to-day life.
Q: How have your goals and approaches changed over time?
A: When my sons were younger, I had the same goals many parents had: integrating them into the community, helping them develop friendships and creating opportunities for them to thrive alongside their peers.
But over time, I’ve had to adjust those goals to match reality. My boys didn’t have friends until they were in environments with other children who also had severe autism. Neurotypical children weren’t interested in forming friendships with them. It wasn’t until they were among peers who shared similar challenges that they experienced social connection.
Another area where I’ve had to shift my approach is around long-term living options. There’s a law—the Olmstead Act—that requires individuals with disabilities to live in integrated community settings. It was designed to prevent the institutional abuse that happened in the past, which is critically important. However, it doesn’t account for individuals like my sons, who can't fully integrate and may actually benefit from living environments tailored to their needs.
I often think about senior living communities—places where residents with similar needs live together, where staff can support each other and where services are centralized. Families like mine don’t have access to that option because the law doesn't allow it. Instead, we’re left isolated, trying to cobble together care and support in a world not designed for our situation.
I don’t expect that to change anytime soon, so our focus has shifted. Now, it’s about keeping my sons safe, supported and as engaged as possible, even if that means more time at home and fewer trips into public spaces.
Q: What advice would you offer other parents facing similar transitions as their children grow?
A: First, recognize that goals and expectations will evolve. What works when your child is small might not be sustainable as they grow into adulthood and that’s not a failure—it’s reality.
Second, don’t underestimate the impact of communication challenges. The inability to ask questions, express fears or understand changes often lies at the root of behavioral issues. Visual supports, trusted caregivers and predictable routines help but sometimes, despite best efforts, the world still becomes too overwhelming.
Finally, know that you’re not alone in feeling isolated. Society isn’t fully prepared to support families dealing with severe autism and systemic barriers that limit living arrangements and care options. Connecting with others in similar situations can provide perspective and solidarity, even if public visibility remains limited.
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Casandra's experience is the primary driver behind the Autism Knowledge Gateway, a project designed to ensure peer-reviewed medical interventions reach autistic people and those who care for them. Learn more about how to get involved with AKG.