Dedicated to our memory of Christopher Finnes and Nicholas D’Amora who inspired so many in their short but extraordinary lives
Empowering Voices: A Community-Directed Panel Discussion on Epilepsy in Autism
As an organization committed to serving individuals with autism, we understand the unique challenges and uncertainties that come with a diagnosis of epilepsy.
This online panel discussion that took place on June 2, 2023 aimed to bridge the gap between the autism community and epilepsy researchers, neurologists and epileptologists, ensuring that our voices are heard and our experiences shape the research agenda. We believe that collaboration and shared insights are crucial in driving meaningful advancements in epilepsy research and treatments for individuals with ASD.
During this interactive online panel discussion, parents, caregivers, and individuals with lived experiences shared their case stories, challenges, and perspectives directly with leading epilepsy researchers and physicians. Together, they discussed current treatments, explored unanswered questions, and identified research priorities that truly reflect our community’s needs.
As part of this event we also gathered input from members of our community – individuals with autism who suffer epilepsy and their parents and clinicians – on key research areas in need.
Summary of the Key Topics for Further Investigation
Etiology / triggers / warning signs
- Understand the mechanisms of the late onset of seizures in some individuals with ASD during adolescence, needed diagnostics and treatment to potentially prevent epilepsy.
- Gain better understanding and guidance on how to recognize seizures and early warning signs.
- Investigate what can be deduced when seizures occur with a specific pattern, e.g., after waking up.
- Research possible triggers such as exacerbations of comorbidities (autoimmune disorders, allergies, mast cell activation, etc), and other environmental factors like toxins, foods, infections, etc.
- Study the prevalence and impact of subclinical seizure activity in the autism population: When does it start? Does addressing it help with clinical features/developmental delays? What triggers it? What is the impact of it on a developing brain?
- Investigate the links between diabetes, glucose handling and seizures in ASD.
- Research TANC2 and other possible genetic variants with ‘unknown significance’.
- Issue guidance on how to evaluate benefits and side-effects from antiepileptic medications – for example are there any specific factors that would make someone more susceptible to side effects.
- Study differences in response to anti-epileptic medications between those with autism and epilepsy vs those with epilepsy alone, and elaborate specific factors that would make someone more susceptible to side effects.
- Investigate if individuals with autism experience more adverse reactions/side effects to antiepileptic medications than patients without autism, as indicated by some reports/personal observations. If this is found the be the case, investigate the reasons.
- Research vagus nerve stimulation (VNS) – its mechanisms of action, likely responders etc, and other non-invasive options such as breathing exercise/oxygen masking to increase delivery of oxygen to the brain.
- Research medical marijuana and cannabinoid medicine.
- Investigate the presence of channelopathies that may impact occurrence or treatment of seizures.
- Study the use of off-label medicines (ponstan, bumetanide etc) to control seizures.
- Compare stimulant-based medication vs depressive medications for treatment of seizures.
Awareness / general
- Raise awareness and spread information amongst healthcare professionals, including internationally – information on various tests that can be done, treatments other than antiepileptic medications, sharing case studies etc.
- Update and publish a consensus article to establish autism as a risk factor in epilepsy, and hence the need for a more aggressive and proactive approach to diagnosis and treatment.
- Carry out retrospective and/or prospective studies further to investigate the need for changes in standard of care.
Shaping the Future – Expected Outcomes
This panel discussion built on the work that we had previously started at our research roundtable on seizures at Synchrony 2022. It has served as a springboard to develop a research grant proposal for funding by the BRAIN Foundation. The research updates and publications will be shared back with the community.
“Empowering Voices” was not just an event; it was a platform for collective empowerment, advocacy, and community-driven research. Our community members participation and input will play a pivotal role in shaping the future of epilepsy research in the context of autism.
Tributes and Thank You
As an organization founded by parents of children with autism, this event was also our tribute to Christopher Finnes and Nicholas D’Amora, two bright lives who were taken away prematurely due to seizures. We want to acknowledge the immense courage and strength demonstrated by the panelists for sharing their deeply personal journeys with us. Their bravery in reliving their pain and struggles candidly, all in the hopes of driving meaningful change and improving the lives of others, is so inspiring.
(1998 – 2023)
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