I recently attended a well organized panel presentation titled "Hope and Healing: Advancing Depression Treatment and Suicide Prevention Through Research and Innovation", organized by the Harvard Extension School Psychology Student Club.

The very distinguished panel of experts included psychiatrists, psychologists and academicians. My hope was to address a few ongoing questions:

1. Why do some professionals with prescribing authority overlook signs of autism, even when these signs can lead to severe outcomes like suicidal behaviors?
   • Could this be due to a lack of awareness or training? If so, why aren’t medical professionals adequately educated on recognizing and addressing these critical signs, especially given their role in patient care?
2. Why isn’t comprehensive training on recognizing and addressing autism, particularly in  individuals with high language proficiency who don't have intellectual disability, a standard part of medical school curricula?
   • Wouldn’t such education better prepare future doctors to respond appropriately and improve outcomes for autistic individuals, especially considering the significantly higher suicide rates in this population?
3. With the signing of the Autism CARES Act of 2024, how will this legislation be implemented to advance research into how depression and suicidality uniquely affect the neurodivergent community? The bill includes language throughout the text, mandating inclusivity of research and other work by the federal government on autism across the entire spectrum, including those with the greatest needs who have profound autism.The 2024 Act requires that research and the subsequent report to Congress by the Secretary of HHS:

“reflects the entire population of individuals with autism spectrum disorder, including those individuals with co-occurring conditions and the full range of needs for supports and services, including such supports and services to ensure the safety, and promote the well-being, of such individuals.’’]

• What specific steps are being taken to ensure this research translates into actionable improvements for mental health care?

3. How many mental health professionals and researchers are familiar with or have attended the INSAR (International Society for Autism Research)conference?
   • Given the wealth of knowledge shared at this event, how can attendance or engagement with conferences like INSAR be encouraged to foster collaboration and better understanding within the field?
4. How can autism burnout be differentiated from clinical depression?
   • What tools or criteria are used to ensure accurate diagnosis and effective treatment for autistic individuals experiencing burnout [due to the manifestation of their disability]?
5. What steps should be taken to provide effective care for autistic individuals who meet definitive diagnostic criteria?
   • How can care plans be tailored to their unique needs, and what systems are in place to ensure these individuals receive appropriate support?
6. How can better questionnaires be developed to help healthcare providers identify autism in individuals at a younger age, particularly when parents or caregivers are also neurodivergent and may struggle with recognizing and effectively communicating hallmarks of autism?

Regrettably the answer to my first question confirmed what I already suspected that medical schools are woefully behind in keeping up with societal needs...I'm paraphrasing (and poorly) the answer from the distinguished psychiatrist: "autism is primarily a pediatric disorder, I work with adults, pediatrician work with autistic patients" "autistic patients are typically referred to neurologists and psychologists, not psychiatrists!"

A new study examining the deaths of people with Autism Spectrum Disorder (ASD) in health and social care settings highlights systemic failures, insufficient training, and gaps in specialist support that contribute to avoidable outcomes. The study was published in The Journal of Adult Protection. The researchers analyzed the Coroners' inquests of 42 individuals diagnosed with ASD, who died between January 2017 and July 2023, with a specific focus on deaths deemed preventable by Coroners in health and social care settings.

In the reports reviewed, 57% highlighted concerns about insufficient understanding of ASD. The analysis of the Prevention of Future Deaths (PFD) reports revealed that this lack of awareness across agencies created barriers to identifying and addressing individuals’ mental health needs. In some cases, this led to individuals requiring mental health support being rejected or discharged prematurely from care services.

The research also identifies a gap in specialist services tailored to the needs of autistic individuals. Many PFDs cited the absence of appropriate accommodations or resources as a contributing factor to these deaths, which increased the risks faced by this population. 

Our 21 year son died of suicide on May 8th, 2019. At the time of his death he had been seen by 2 psychiatric nurse practitioner, a mental health counselor, neuropsychologist, and was a current patient of two neurologists at Evergreen Hospital who had rejected and refused him any care services. One doctor, Ziad Alsoufi, opined within minutes into his appointment "He is not autistic, those people are retarded, he is not retarded, he's going to college, driving and working full time!" Our son and I were stunned at this doctor's ignorance and callousness. Our oldest son is autistic and has mild intellectual disability(ID). And as Dr. Alsoufi noted, he did not attend college, nor driving, and doesn't work full time, but these are not the merits that negate a confirmed chart diagnosis of autism, which our younger late son had since he was 4 years old.

About 70 percent of autistic adolescents and adults "may have" another mental disorder and 40 percent "may have two or more" such disorders (anxiety, language impairment, catatonia, eating or sleep disorders, oppositional defiant disorder, depression, self-injurious behavior, aggression, schizophrenia, psychosis, obsessive compulsive disorder, tic disorders, and bipolar disorder), according to the fifth edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, or DSM-5.

Insufficient understanding of autism has deadly outcomes, whether it's drowning deaths in children or other preventative deaths in adults. Training on autism ought to be available to medical doctors, including psychiatrists and neurologists.

I’ll be joining us at the Harvard Extension School Psychology Student Club later this year for a podcast to continue raising awareness about this critical issue. Also please mark your calendars for Autism + Co-occurring Mental Disorders on May 8th, 12-1pm with Dr. Arthur Westover UT Southwestern Medical School Adult Psychiatrist specializing in autistic adults and Autistic Burnout vs. Depression on May 22nd, 12-1pm with Dr. James Hammel of Seattle Psych.