Feb 11, 2024

AES Interagency Autism Coordinating Committee (IACC) Public Comment

The American Epilepsy Society (AES) submitted comments to the Interagency Autism Coordinating Committee (IACC), the National Institute of Mental Health (NIMH) Office of National Autism Coordination (ONAC) call for public comments to assist the IACC in identifying priorities related to physical and mental health conditions, and other related conditions, that commonly co-occur with autism. The IACC is a federal advisory committee that provides advice to the Secretary of HHS about autism and related issues. 

What are the most significant challenges caused by co-occurring physical health conditions in autistic people? (Examples of co-occurring physical health conditions: gastrointestinal disorders, sleep disturbances, epilepsy, sensory and motor challenges).
For those with autism and epilepsy, the ability to obtain a history directly from the patient and to perform a physical examination for those with limited communication skills can be difficult. In such cases, the providers rely more heavily on objective testing. For example, EEG to establish epilepsy diagnosis from behavioral outbursts is common. In addition, some patient behavior will limit obtaining standard testing without extreme methods (e.g., sedation for brain MRI or EEG). Another significant challenge is trying to figure out how often they are having seizures. For adults with autism who live in group homes and may not always be observed or interacting with others, subtle seizures can easily be missed. Also, if staff are not diligent about writing down seizures in a log, it’s quite difficult to know the seizure frequency. Group homes can also have trouble distinguishing seizures from various types of behaviors. 

What are the most significant challenges caused by co-occurring mental health conditions in autistic people? (Examples of mental health co-occurring conditions: depression, anxiety, attention-deficit hyperactivity disorder, aggressive or self-injurious behavior, suicidality).
It can be difficult to identify clinicians who are trained to provide care for these conditions in this special population OR who feel comfortable providing care for this special population. There is a delay in starting therapy due to a shortage of healthcare professionals (e.g. neuropsychologists) and developmental-behavioral pediatricians. The current path for board certification in developmental-behavioral pediatrics requires completion of a pediatrics or combined internal medicine-pediatrics residency program followed by a 3-year developmental-behavioral pediatrics fellowship. Upon conclusion of this 6-years of training, the average starting salary for a developmental-behavioral pediatrician is often lower than their general pediatrics colleagues who only complete the 3 years of post-graduate pediatric training. To address the shortage of developmental-behavioral pediatricians required to care for the increasing population of children with autism, reimbursement for developmental-behavioral pediatricians and the duration of training should be reassessed.

What are the most significant challenges caused by other conditions that co-occur with autism, such as learning disabilities, developmental disabilities, intellectual disabilities, and communication disabilities?
Communication disabilities and intellectual disabilities are the most encountered challenges in this patient population. 

What additional research is needed to help address co-occurring conditions for autistic people?
Additional research is needed in the following areas to help address co-occurring conditions for people with autism:

Identifying the EEG markers for diagnosing the onset of autism at the earliest possible age

Identifying biomarkers in evaluating seizures in autism. This could include EEG, MEG, etc. Identifying the presence of epilepsy and instituting strategies to minimize progression could help in minimizing long-term neurocognitive sequelae in patients.

Establishing criteria/ biomarkers for identifying psychiatric conditions in children with autism. Additional research falling under this umbrella includes developing a structured format for identifying autism in youth with intellectual disability, identifying overlap in symptoms in autism and schizophrenia in youth, differentiating tics from stimming behaviors individuals being evaluated for autism, and identifying eating disorders in autism (when symptoms of anorexia and sensory sensitivities (i.e., food textures) overlap).

What could be improved in autism services and support to help address co-occurring conditions for autistic people? (Examples: Equitable access to and accessibility of services, insurance coverage, service systems issues, patient-provider interactions).
The time to diagnosis of autism comes with a waiting list ranging from one to three years, depending on the patient’s financial situation and location. The diagnosis of autism spectrum disorder necessitates genetic testing, which not only benefits the patient but also allows parents to plan further pregnancy. Autism requires a significant allocation of public health funding, and genetic testing should be easily accessible, enabling us to address the issue at a certain level.

Clinical resources and social support could both be improved. A network of resources for affected patients and clinicians would improve care. Patients often want referrals to specific services or practitioners with experience/knowledge. There are limited resources outside of academic centers in many cases and finite resources at academic centers, which exacerbates the problem for patients and clinicians.

An additional void is that once patients graduate from high school and post-high school programs, there may be limited opportunities for them to remain engaged with the community. Some day programs don’t allow patients with epilepsy, and the same is true for some work programs geared toward individuals with autism. Even if the program does admit a person with autism and epilepsy, the staff may be anxious as they are not appropriately trained in epilepsy care and, as a result, restrict the person’s activity within the program, depriving the person of activities that could be of benefit. 

What lasting impact has COVID-19 infection and illness had on co-occurring physical and/or mental health conditions for autistic people?
COVID-19 limited routines and access to programs that were getting these patients outside of their houses. These programs are significant chances for social engagement and support for caregivers.  Some children with autism had regression secondary to discontinuation of therapy in a pandemic.

What lasting positive or negative impacts have societal changes due to the COVID-19 pandemic had on physical or mental health for autistic people? (Examples of societal changes: disruptions in services, increased remote work and school, increased use of telehealth, reduced in-person social interactions and obligations).
One of the lasting impacts of COVID is that many day programs were stopped, which was a big loss for people who attended them. Patients are often in group homes or at their own homes without any structured social or work programs to attend. A lot of patients really enjoyed the social interaction that their day programs offered, and not having this has left a big void in their lives.