The National Institute of Mental Health (NIMH) Office of National Autism Coordination (ONAC) is seeking public comments to assist the IACC in identifying research, services, and policy priorities related to physical and mental health conditions, and other related conditions that commonly co-occur with autism. You can submit comments here. Deadline: February 14, 2024.
You are invited to submit comments, with a maximum of 1500 characters for each of these topic areas. We have included NCSA’s own comments as well, below.
1. 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)
NCSA: Many in our severe/profound autism population suffer physical pathologies that can severely compromise well-being, to the point of being fatal. These include catatonia, epilepsy and seizures, gastrointestinal distress, insomnia and sleeplessness, and sensory overload. These pathologies can be ruinous to quality of life for the individual and family. They cause suffering and often, premature death.
2. 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, aggressive or self-injurious behavior, suicidality)
NCSA: In our severe/profound autism population, behavioral pathologies are pervasive and can severely compromise well-being, to the point of being fatal. These include aggression, self-injury, property destruction, pica, and elopement. Aside from death, common consequences include bruises, lacerations, scarring, broken bones, ripping out of hair, and skin infections to both the afflicted individuals and their caregivers. Repeated self-injury can cause detached retinas, cauliflower ears, and traumatic brain injury. Pica can cause our children to ingest lightbulbs, rocks, toys, soap and countless other inedible objects. These are more than "challenges," they are lethal or traumatic injuries that often require emergency medical treatments, surgeries and complicated, costly hospital stays.
Not only are these behaviors traumatic for the individual, the family, educators and caregivers, they often result in the need for emergency medical treatment, crisis and inpatient care, and residential placement. This imposes enormous costs on families and care systems. Reducing the frequency and intensity of these pathologies should be a preeminent goal for autism treatment and research, as they can result in death or further serious disability.
3. 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?
NCSA: In our severe/profound autism population, autism is in part *defined* by severe functional and communication impairment, so it is unclear why the NIMH considers these to be "co-occurring" conditions. Our population's functionality and independence is severely compromised by pervasive communication impairments, typically involving no or minimal language, and cognitive impairments so severe that they prevent any chance for independent living or meaningful employment.
4. What additional research is needed to help address co-occurring conditions for autistic people?
NCSA: A top research priority for our severe/profound autism population is the alleviation of distressing and too-often fatal behaviors of aggression, self-injury, property destruction, pica, and elopement. There is a desperate need for more efficacious medical and behavioral treatments, and of course more understanding of routes for prevention.
We need more research on: psychiatric medications; electro-convulsive therapy; other brain-activity modifying therapeutics such as TMS; and behavioral/sensory approaches. Much more emphasis must be placed on the needs of adults who often lack access to appropriate care and whose dangerous behaviors cause enormous burdens to families and care providers.
5. What could be improved in autism services and supports 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)
NCSA: Insurance, both private and public, should cover both outpatient and inpatient care for behaviors associated with Profound Autism. A new insurance code should be created to correspond with these clinical impairments (eg, aggression, self-injury, pica, elopement, property destruction), and treatments must be recognized as medically necessary under mental health parity. With urgency we must foster a much larger and more robust network of care providers in all states to address the care needs of this rapidly growing population.
In addition, many suffering with severe and profound autism require a therapeutic model of long-term residential living with onsite or collaborative psychiatric and medical care. Medicaid and other funding should directly and realistically address the needs of those suffering with the most severe forms of autism.
6. What lasting impact has COVID–19 infection and illness had on co-occurring physical and/or mental health conditions for autistic people?
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7. 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)
NCSA: The Covid shutdowns have had a lasting devastating impact on programs serving individuals with severe and profound autism. Many programs, particularly those serving high-needs adults, have shuttered, leaving many adults almost completely isolated with no access to day habilitation or community engagement.
We also believe that the federal government should take action to facilitate the use of tele-health across state lines. At this time, many regions are not served by autism specialists and their only hope for reasonable treatment access is through tele-health.
You can submit comments here.