A Parent's Journey with Autism Spectrum Disorder: Part 4
Concurrent Medical Issues, Finding the Right Specialists and Navigating Complex Care
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 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, have your children experienced concurrent medical issues and how did you navigate those challenges?
A: Both of my boys were born healthy, meeting all their milestones until they experienced developmental regressions, which coincided with a series of illnesses.
Gareth began to regress after he turned two. I noticed that while younger children in our playgroup were beginning to talk more, his progress had slowed. Around this time, he started experiencing frequent ear infections, sleep disruptions, abnormal stools, rashes and fevers. Our pediatrician dismissed my concerns about his development, attributing the changes to the arrival of his baby brother, Korlan, who was born the day before Gareth’s second birthday.
By the new year, Gareth had continued to regress, and we began consulting specialists. Nine months later, when Korlan also began to regress, we pursued a deeper investigation. A doctor at Johns Hopkins, Dr. Richard Kelley, diagnosed Korlan with regressive autism caused by acquired mitochondrial disease, which stemmed from environmental toxins. This led us to have Gareth tested as well, and he received the same diagnosis.
Note: Mitochondria are cell organelles enclosed by membranes that serve as the primary source of chemical energy for cellular processes. They store this energy in the form of a molecule called adenosine triphosphate (ATP), the body’s energy currency and when the body cannot adequately produce it, then bodily systems cannot function properly.
Acquired mitochondrial disease refers to a collection of conditions caused by malfunctioning mitochondria within cells. As the organelles responsible for producing cellular energy, dysfunctional mitochondria can lead to impaired functioning of the body's systems.
Q: What steps did you take after these diagnoses?
A: Determined to find effective treatment, I began searching for doctors who specialized in both autism and mitochondrial disease. That search eventually led me to Dr. Dan Rossignol in Florida, after exhausting all options closer to home.
During our first visit, I scheduled a double new-patient appointment for both boys, which gave Dr. Rossignol three hours to observe and assess them. I’ll never forget when he asked, “What are you doing for seizures?” I had no idea they were having seizures.
What I thought were “stimming” behaviors—like Gareth rolling his eyes back or stiffening his arms—turned out to be seizures. During that appointment, Dr. Rossignol observed multiple seizures in both boys. He also conducted comprehensive blood, urine and stool tests, which revealed additional underlying issues like gastrointestinal conditions, PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and food and environmental allergies.
Q: How did these findings change your approach to their care?
A: It was a game-changer. Until then, I hadn’t realized just how sick my boys were. Dr. Rossignol’s insights, combined with the foundational diagnosis from Johns Hopkins, set us on a path toward targeted treatments.
We made immediate changes to their diet, added medications, introduced supplements and pursued therapies that addressed both their autism and co-occurring medical conditions. However, the process wasn’t overnight—it took time to see results and there were plenty of challenges along the way.
Q: What was the hardest part of implementing these changes?
A: Adjusting their diet was the most overwhelming aspect at first. They couldn’t eat many of their usual foods and I initially struggled to find alternatives. Then I shifted my mindset: instead of focusing on what they couldn’t eat, I started exploring what they could eat.
I discovered a website called PecanBread.com, which offered recipes that fit the Specific Carbohydrate Diet (SCD) and I found child-friendly cookbooks that made meal prep less daunting. I also learned to adapt their medications, crushing pills and mixing them into liquids to mask the taste and giving organic pineapple juice as chasers.
Q: Were there other specialists who played a significant role in your children’s care?
A: Absolutely. While Dr. Rossignol and other MAPS (Medical Academy of Pediatric Special Needs) doctors were instrumental, Dr. Deepa Menon, an associate professor in the Neurology and Neurodevelopmental Medicine Program at Kennedy Krieger Institute (KKI) , has also been a key figure in my boys’ treatment. We also worked with an allergist and gastroenterologist to improve the boys’ digestive issues related to autism.
Without Dr. Kelley at Johns Hopkins identifying mitochondrial disease, I don’t think I would have felt desperate enough to fly to Florida for a specialist. The collaboration between these experts has been incredible. They’ve worked together to address both the autism and the underlying medical issues, ensuring a comprehensive approach to my boys’ care.[1] [2]
Q: What advice would you give to other parents navigating co-occurring medical issues in their children?
A: Here’s what I’ve learned:
Trust Your Instincts: If something doesn’t feel right, keep asking questions and seeking answers. Early intervention is critical, and persistence can make all the difference.
Find the Right Specialists: Look for doctors who understand the complexities of autism and co-occurring medical issues. MAPS doctors can be a great resource.
Be Open to Change: Adjusting diet, treatments and daily routines can be overwhelming, but focusing on what’s possible rather than what’s restricted can make the process more manageable.
Educate Yourself: Learn as much as you can about your child’s condition. Resources like the Autism Knowledge Gateway and parent-led forums can provide valuable insights.
Seek Support: Connecting with other parents can help you feel less alone and provide practical advice for navigating challenges.
Q: Looking back, what has been the most rewarding aspect of addressing these medical issues?
A: Seeing my boys improve has been worth every challenge. Their health and quality of life have significantly improved and I’m forever grateful for the doctors who took the time to understand and treat their unique needs.