Autism and Suicide: Reducing the Risk Autism suicide statistics by Lisa Morgan

Autism and Suicide: Reducing the Risk

Autism suicide statistics

by Lisa Morgan, M.Ed., CAS

(Editor’s Note: This article is part of our Suicide Prevention Month series, in collaboration with the American Association of Suicidology.)

     Autism is a lifelong complex neurodevelopmental challenge in the areas of social communication, repetitive behaviors, sensory sensitivities, perseveration, and intense specific interests. Many autism diagnoses come with co-morbid mental health disorders, such as anxiety, depression, and post traumatic stress disorder (PTSD); especially for those diagnosed late in life. 

     Autistic people are at a high risk of suicidal ideation and/or dying by suicide. Research has found a 66% lifetime experience of suicidal ideation and a 35% lifetime experience of planned or attempted suicide, supporting the assertion that these occurrences are common in people with autism (Cassidy et. al., 2014). Dr. Cassidy also said, “This is a shocking wake-up call for society, when a significant section of the population feel that they don’t belong in the world. As a society, we urgently must do more to value neurodiversity. This could ultimately save lives.”

     Some of the reasons why there’s such a high risk of suicide in the autism community are the defining aspects of autism. Social communication difficulties make it extremely difficult to build a support system, and many times, there is a history of bullying, rejection from peers, isolation, and abuse in place of a support system. The perseveration that comes from being autistic leads to a repetitive loop of negative experiences. It is difficult to break out of this and shift thoughts in a positive direction. Social isolation, lack of social skills, poor communication, anxiety, depression, and PTSD are all factors contributing to suicide in the autism community.

     Asking for help is a social skill, so reaching out can be difficult for those on the autism spectrum. If an autistic person does ask for help, describing how they feel using words for emotions may not happen in the traditional sense. Many autistic people with alexithymia, the inability to identify and understand emotions, are restricted in asking for help because of their lack of emotional awareness. An autistic person may express feeling depressed by describing sad experiences, such as “the feeling of walking through the grounds of a closed, run-down carnival with rusty, broken rides, dull, peeling paint, and trash being blown around by the wind.”

     Steps can be taken to help autistic people who are struggling with suicidal ideation or are suicidal. One way to help is to listen to what they are saying when, if, they do reach out for help. Understanding the differences in communication, literal thinking, varying processing speeds, and verbalizing how they are feeling will help autistic people to feel safe enough socially to share their struggles.

     Many autistic people think they do not belong to this world, and a lot of their social interactions sadly validate those thoughts. Valuing them as people who matter, whether they are verbal, nonverbal, introverted, misunderstood, socially skilled, or socially struggling, will go a long way in ensuring them they do indeed belong to this world as much as anyone else.  Autistic people have a lot to give to the world by way of creativity, intelligence, kindness, friendship, and work ethic, to name just a few strengths.

     The American Association of Suicidology (AAS), in partnership with Nationwide Children’s Hospital and TAPS (Tragedy Assistance Program for Survivors), is working toward developing autism-friendly resources to help autistic people in crisis. The resources are going to be utilized in crisis centers first, with a one-page tool available to all crisis center workers. This tool is full of pertinent information about communicating with an autistic person in crisis.

     The one-page tool is being introduced at a webinar on 9/19/18 at 12 p.m., presented by Amelia Lehto and Lisa Morgan, moderated by Carla Stumpf Patton. The tool will be made available to crisis centers for crisis center workers to use when autistic adults call or text in for help.

     Working together, we can start changing the statistics on suicide in the autism community.

Lisa Morgan M.Ed., CAS, is the author of Living Through Suicide Loss with an Autism Spectrum Disorder (ASD), written after her husband of 29.8 years died by suicide. An autistic adult, Lisa is co-lead for the AAS committee, Suicide in the Autism Community, a feature writer for Spectrum Women online magazine, and a community council member of AASET (Autistic Adults and other Stakeholders Engaged Together).

Poor Hospital Compliance With Patient Record Requests

Poor Hospital Compliance With Patient Record Requests

Diana Swift

October 05, 2018


US hospitals continue to place cost and processing obstacles in the way of patients requesting their personal medical records, according to a study published online October 5 in JAMA Network Open.

The study highlights the need for tougher enforcement of state and federal policies on the accessibility of protected health information to ensure a smooth, timely, and affordable process for patients, write Carolyn T. Lye, BA, a medical student at Yale School of Medicine, New Haven, Connecticut, and colleagues.

In its survey of 83 top hospitals across 29 states, the study reports that many facilities do not comply with the Privacy Rule of the Health Insurance Portability and Accountability Act (HIPAA) of 1996. This federal law guarantees that patients have access to their protected health information within 30 days in their preferred format and at a reasonable charge.

The investigators evaluated adherence to HIPPA guidelines through prescripted telephone interviews conducted with one person at each of the hospitals’ medical records departments from August 1 to December 7, 2017. The elite hospitals were ranked as the top 20 for each of the 16 adult specialties in the 2016-2017 US News & World Report’s Best Hospitals National Ranking.

The survey found contradictory information about records entitlement, varying release times, and higher-than-recommended fees.

“There were overwhelming inconsistencies in information relayed to patients regarding the personal health information they are allowed to request, as well as the formats and costs of release, both within institutions and across institutions,” Lye said in a JAMA news release. “We also found considerable noncompliance with state and federal regulations and recommendations with respect to the costs and processing times associated with providing access to medical records.”

In 2017, a report from the US Department Health and Human Services’ Office of the National Coordinator for Health Information Technology revealed barriers to patients’ obtaining their medical records.

Although all 83 facilities in the study communicated by telephone that they could release a patient’s entire medical record, only 53% explicitly stated this on their paper authorization forms, and only 11% stated on forms that they could release physicians’ orders.

Discrepancies about available formats emerged in telephone statements vs statements on forms, pointing to noncompliance with federal regulations that require release in a patient’s preferred format. There was a phone-vs-form discordance of 83% vs 48% on the option of picking up the records in person and of 24% vs 17% for transmission by fax. For other release options, the phone-form discrepancies were 47% vs 33% for email, 66% vs 42% for CDs, and 25% vs 40% for online patient portals. There was no discrepancy for release by regular mail (100% both).

As for fees, 43% of hospitals provided no fee schedule on the authorization form or on the webpage for downloading the form. Whereas some hospitals charged no processing fees, 48 (59%) charged costs higher than the Office for Civil Rights recommendation of a flat fee of $6.50 for electronically maintained records — in one case charging $541.50 for a 200-page record.

In the telephone interviews, 82 hospitals disclosed costs for a paper release, and one was unable to comment because costs were calculated by an external party. Of the 29 hospitals that disclosed fees on authorization forms, nine (31%) charged the same fees as those disclosed by telephone, 10 (34%) charged less, three (10%) charged more, and seven (24%) charged nothing.

On the issue of timing, 71 hospitals provided mean times of release for paper records in telephone interviews, with the time ranging from same day to 60 days. Of the hospitals that responded with processing times, seven centers were not compliant with government requirements.

Ten institutions gave a maximum time of release, whereas two could not specify either a mean or maximum. Of those supplying processing time information, 17 (21%) reported mean times of fewer than 7 days, 21 (25%) of 7 to 10 days, 26 (31%) of 11 to 20 days, four (5%) in 21 to 30 days, and three (4%) of more than 30 days. Almost 15% were “unable to say.” Release times were generally shorter for electronic records than for paper records.

“As legislation, including the recent 21st Century Cures Act and government-wide initiatives such as MyHealthEData continue to stipulate improvements in patient access to medical records, attention to the most obvious barriers should be paramount,” the authors write.

“We are also in an era in which patients are participants in their own health care. Inhibiting access for patients to their own medical records with complicated, lengthy, and costly request processes prevents patients from obtaining information that they may need to better understand their medical conditions and communicate with their physicians,” Lye added in the news release.

The authors’ relevant financial relationships are listed in the original article.

JAMA Network Open. Published online October 5, 2018. Full text