A Parent's Journey with Autism Spectrum Disorder: Part 5
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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 navigating communication with healthcare providers and managing complex medical needs for her sons.
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 they would 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, what strategies have you developed to communicate effectively with your children’s healthcare team?
A: The strategies I use today were developed through trial and error—and a lot of mistakes along the way.
Early on, I tried keeping notes in a notebook to track my boys’ medical needs. This was challenging without today’s smartphone apps and note-keeping tools. With multiple doctors prescribing medications and two pharmacies—one for regular prescriptions and one for compounded medications—it became clear that I needed a more organized system.
One critical change came after my youngest son suffered a drug reaction that left him in a coma for five days. It was terrifying. But it taught me the importance of consolidating care. Now, I insist that all medications are managed by one doctor and filled through a single pharmacy.
I also ensure that all specialists can communicate with each other by signing a release of information. Additionally, I collect detailed notes from my boys’ ABA therapists and the school support team to share with their doctors. Since my boys communicate primarily through behaviors, these observations provide critical insights into what might need to change in their treatment plans.
I have caregivers record details about restroom visits, as bowel and urinary health are strong indicators of overall well-being. We use a Bristol Stool Chart to track the frequency, color and consistency of bowel movements, which helps guide dietary, supplement or medication adjustments.
Q: Have you faced challenges in finding supportive doctors?
A: Definitely. When my boys were first diagnosed, I searched for a new pediatrician closer to home because our original doctor insisted on vaccinating them while they were sick. I wanted to wait until they were healthier to avoid overloading their immune systems, especially given their mitochondrial disease, which is caused by stress on the immune system.
Instead of understanding my concerns, I faced judgment. Some doctors accused me of making up their mitochondrial condition, while others suggested I was just a desperate mom looking for answers. One doctor even accused me of abuse when I presented results from a urine test and another claimed I was harming my boys by giving them a magnesium supplement to help with their bowels.
I’ll never forget a time when I tried to find a neurologist closer to home. I provided all the necessary information to the receptionist when scheduling the appointment but when we arrived, staff members began observing my boys from the waiting room. Forty minutes after our appointment time, the receptionist informed me that my insurance was denied and the doctor couldn’t see my boys. I knew it wasn’t true—they just didn’t want to treat children like mine.
Rather than getting angry, I’ve learned to recognize when a doctor isn’t a good fit and move on. These experiences have taught me to spot supportive doctors quickly and appreciate the ones who genuinely want to help.
Q: What advice would you give to parents just starting this journey?
A: First, understand that the average pediatrician may only be able to refer you to a specialist. Your child’s needs are likely beyond their expertise, so don’t expect them to manage complex medical conditions.
Instead, connect with other parents who can recommend specialists and resources. Online forums and Facebook groups are excellent tools—you don’t have to wait for in-person support group meetings anymore. These communities can also help you identify which doctors are flexible and willing to adapt their care to your child’s needs.
Most importantly, trust your instincts. If something feels off, don’t hesitate to ask questions or seek a second opinion. Persistence is key to ensuring your child receives the care they need.
Q: How do you think the Autism Knowledge Gateway (AKG) can support parents and doctors?
A: The AKG has the potential to bridge a significant gap. One of the biggest challenges I’ve faced is presenting new treatment ideas to doctors who want peer-reviewed evidence. The AKG consolidates over 40,000 peer-reviewed studies on autism-related care, giving parents the resources to advocate for their children with confidence.
It also provides a platform for doctors to collaborate. They can share case studies, discuss effective treatments and learn from one another’s experiences. This kind of collaboration, supported by science, will make a world of difference for families navigating complex care.
Q: What has been the most rewarding part of this journey?
A: Despite the challenges, seeing my boys’ progress has been incredibly rewarding. Their health and quality of life have improved, and knowing that my advocacy played a role in that progress makes every struggle worthwhile.
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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.