988, Crisis Counselors, and Autistic People

In The Politics of Autism, I write about the many challenges facing people on the spectrum.  Among many other things, they are at high risk for suicide. (In July, the United States transitioned from 10-digit National Suicide Prevention Lifeline to 988 – an easy-to-remember three-digit number for 24/7 crisis care. "

Corinne Purtill at LAT:

Free, largely confidential and available 24 hours a day via call, text or online chat, the 988 Lifeline — formerly the National Suicide Prevention Lifeline — is among the most accessible and effective suicide prevention tools in the U.S.

But there are challenges for autistic people, who may process information slowly or misunderstand what the crisis counselor is saying.

“Autistic people are misunderstood and have difficulty conveying what they’re going through in a way that’s productive,” said Lisa Morgan, founder and co-chair of the Autism and Suicide Prevention Workgroup, a research collective dedicated to the issue. “The crisis counselors try to help, but end up kind of just landing wrong.”

...

Morgan, who is herself autistic, and her research partner Brenna Maddox, a clinical psychologist and co-chair of the workgroup, set out to help the 988 system do just that.

In 2023, they published a guide to help crisis workers assess whether the person they are talking to could be on the autism spectrum. It also offered specific conversation strategies that could improve the call: asking if the person has any special interests; asking clear, short, direct questions; allowing ample time for the person to respond; and being open to the caller’s own suggestions for what works for them. The final page of the guide is a single sheet of tips that crisis workers can print out and hang by their desk.

“An autistic individual may say that spinning quarters is a good distraction technique for them,” reads one tip. “Even if that sounds unusual to the crisis center worker, it is still a valid and acceptable answer.”

The following year, they published a detailed guide for autistic adults on what to expect when contacting 988. This includes the likelihood of a wait time (the 988 number connects to a network of more than 200 individual call centers around the U.S. and it can take a few minutes to find an available counselor) and how to sign off on a call or text chat. Earlier this year, the workgroup released a version for autistic youth and their caregivers.

Then last year, they achieved a goal long in the works: direct training for 988 counselors. Morgan and Maddox conducted three one-hour webinars for Vibrant that covered the fundamentals of autism, autism-specific suicide warning signs and support strategies for autistic people in crisis.

 

Suicidality

In The Politics of Autism, I write about the many challenges facing people on the spectrum.  Among many other things, they are at high risk for suicide. (In July, the United States transitioned from 10-digit National Suicide Prevention Lifeline to 988 – an easy-to-remember three-digit number for 24/7 crisis care. "

Nuzum, E., Medeisyte, R., Eshetu, A. et al. Autistic traits and suicidality in midlife and old age: investigating mediating effects of mental health and social connectedness. Nat. Mental Health (2026). https://doi.org/10.1038/s44220-025-00579-0 Abstract:

Suicidality is increased among middle-aged and older autistic adults, but little is known about the underlying factors linking autism with suicidality in midlife and older age. Here we report a cross-sectional observational study of 9,979 adults (76% female) aged 50+ years who completed questionnaires measuring autistic traits, current mental health, social connections and suicidality (suicidal ideation and suicidal self-harm). We use path analysis to explore the relationship between autistic traits and suicidality and the mediating effects of current mental health, social connectedness and male/female sex. Our results find that depression, anxiety, post-traumatic stress disorder (PTSD), loneliness and social isolation all significantly mediate the relationship between autistic traits and suicidal ideation, with small effect sizes. For suicidal self-harm, male sex, depression, PTSD and social isolation were found to be mediators. We conclude that mental health difficulties and social isolation mediate higher rates of suicidality in 50+-year-olds with high autistic traits. Targeted and individually tailored interventions for people on the autism spectrum across the lifespan are important.

Kennedy Cuts

In The Politics of Autism, I analyze the myth that vaccines cause autism. This bogus idea can hurt people by allowing diseases to spread.    Examples include measles, COVID, flu, and polio.

A number of posts discussed Trump's support for the discredited notion.

 Another leading anti-vaxxer is presidential candidate Robert F. Kennedy, Jr.  He has repeatedly compared vaccine mandates to the Holocaust.  Rolling Stone and Salon retracted an RFK article linking vaccines to autism.  He is part of the "Disinformation Dozen." He helped cause a deadly 2019 measles outbreak in Samoa.

He is now Trump's secretary of HHS. 

Eric M. Garcia at The Independent:

Kennedy’s department cut a grant that would have helped reduce suicide among autistic LGBT+ people.

Last year, the National Institutes of Health awarded a grant to Laura Graham Holmes, the professor at Hunter College in New York and a project leader for the ALIVE, which would have looked into interventions for sexual and gender minority autistic people.

Graham Holmes told The Independent she wanted to research this subject because of the fact that a large number of autistic people identify as LGBT+. Numerous studies have shown a significant overlap between autistic and transgender identity. Many autistic people also identify as nonbinary.

“What we know about this this group is that there are higher rates of mental health conditions,” she said. “So I've done some research using electronic medical records and found that, you know, we already know that autistic people have higher rates of depression and anxiety.”

Graham Holmes said that she learned about the grant being terminated last month when her dean told her that it would be canceled.
...
Graham Holmes emphasized how many autistic LGBT+ people have little contact with their families and face high rates of suicide.

Suicide Risk

In The Politics of Autism, I write about the many challenges facing people on the spectrum.  Among many other things, they are at high risk for suicide. (In July, the United States transitioned from 10-digit National Suicide Prevention Lifeline to 988 – an easy-to-remember three-digit number for 24/7 crisis care. "

Brown, C.M., Newell, V., Sahin, E. et al. Updated Systematic Review of Suicide in Autism: 2018–2024. Curr Dev Disord Rep 11, 225–256 (2024). https://doi.org/10.1007/s40474-024-00308-9

Abstract:

The purpose of this review is to provide a comprehensive update of literature published between January 2018 and April 2024, examining suicidal thoughts and behavior (STB) prevalence, risk factors, theoretical models, and interventions in autism.

Recent findings

We identified four recent meta-analyses and two systematic reviews. Pooled prevalence estimates in autism ranged from 34.2% for suicide ideation to 24.3% for suicide attempts. Autistic traits, interpersonal factors, and depressive symptoms were identified as STB risk factors, with elevated risk observed across the lifespan.
Summary

We included 80 studies examining STB in diagnosed autistic people or autistic traits in non-clinical samples. Autistic people were found to have an up to eightfold increased risk of death by suicide compared to non-autistic people, although reported rates varied considerably between studies; co-occurring mental health conditions, social, psychological, and cognitive factors exacerbated risk. Validated STB assessment tools and interventions for autistic people were notably scarce.

Appropriations and Autism

In The Politics of Autism, I write:

For those who remain at larger residential institutions, the horrors of yesteryear have generally ended. In 2012, however, a ten-year-old video surfaced, showing disturbing image of an electric shock device at the Judge Rotenberg Center in Canton Massachusetts. Staffers tied one student to a restraint board and shocked him 31 times over seven hours, ignoring his screamed pleas to stop. The Rotenberg Center is the only one in the nation that admits to using electric shocks on people with developmental disabilities, including autism. Center officials said that they had stopped using restraint boards but insisted that shocks were necessary in extreme cases to prevent officials insist the shock program is a last resort that prevents people with severe disorders from hurting themselves or others.

From the Autism Society:

The House Appropriations Committee passed a bill on July 10 to fund the Departments of Labor, Health and Human Services (L-HHS-ED) for Fiscal Year 2025 FY25. The bill report language can be found here. Two separate summaries were developed. One summary was developed by the majority (Republicans); another summary was developed by the minority (Democrats). The Autism Society is still reviewing the bill. At first glance, we are disappointed to see significant cuts to programs within the CDC that support drowning prevention and suicide prevention. There are also cuts to maternal and child health and Kevin and Avonte programs. We are also analyzing a proposal to consolidate NIH institutes and their impact on funding

From the Autistic Self Advocacy Network

ASAN welcomes the removal of Section 722 from the Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations Act. In June, some members of Congress introduced a rider to the act that would stop the FDA from banning electric shock devices for behavior modification, such as the devices used at the Judge Rotenberg Center. Section 722 said the FDA cannot ban a device that is used by court order. All of the electric shock devices used at the Judge Rotenberg Center are used because of a court order.

If this rider had passed, it would have taken away the FDA’s power to move forward with the proposed rule that ASAN and many grassroots advocates commented to support. Because of your powerful activism, this rider failed to make it into the final bill, and the FDA still has the power to #StopTheShock.

This was only possible thanks to the hard work of our grassroots. You called, emailed, and shared across social media to make your voices heard. Members of our community have fought to end the use of shock devices at the JRC for over a decade, and we will not be ignored. Your calls, along with the hundreds of public comments sent in support of the FDA’s proposed rule, have gotten us that much closer to ending this tortuous practice once and for all.

We also thank the many members of the House Appropriations Committee who supported removing Section 722. At last night’s markup of the bill, Ranking Member Rosa DeLauro and Representatives Chellie Pingree and Debbie Wasserman-Schultz all used their opening remarks to point out the harm this rider would have caused, and the urgent need to remove it. Subcommittee Ranking Member Sanford Bishop spoke in his remarks about our community’s work to educate the Committee members on this issue. We are thrilled that the House Appropriations Committee listened to our community on this urgent issue and acted to protect disabled people from torture.

We are grateful that this rider did not make it into the current version of the bill, but the fight isn’t over yet. The full House of Representatives, and the Senate, still need to vote on this bill. Thanks to your efforts, we have built strong bipartisan opposition to Section 722. We will continue to work with Congress to make sure this rider stays out of the final bill. Meanwhile, the FDA still needs to do their part with the power our community fought for them to keep. ASAN calls upon the FDA to swiftly release the final version of their proposed rule “Banned Devices; Proposal to Ban Electrical Stimulation Devices for Self-Injurious or Aggressive Behavior.”

Euthanasia and Autism

 In The Politics of Autism, I write about the dangers of eugenics and euthanasia. 

\An earlier post described euthanasia in the Netherlands. Some autistic people there have undergone euthanasia because they said they could not lead normal lives.  At NRO, Wesley Smith discusses an AP story on the study:

I never understand why people are surprised by these kinds of horror stories. Once a society decides that killing is an acceptable answer to suffering, what constitutes suffering sufficient to be made dead becomes highly elastic and stretches over time. This can even include loneliness, as I have written about before. The story describes the phenomenon:

Many of the patients cited different combinations of mental problems, physical ailments, diseases or aging-related difficulties as reasons for seeking euthanasia. Thirty included being lonely as one the causes of their unbearable pain. Eight said the only causes of their suffering were factors linked to their intellectual disability or autism — social isolation, a lack of coping strategies or an inability to adjust their thinking.

The unintended cruelty of euthanasia is becoming increasingly clear:

Dr. Bram Sizoo, a Dutch psychiatrist, was disturbed that young people with autism viewed euthanasia as a viable solution.

“Some of them are almost excited at the prospect of death,” Sizoo said. “They think this will be the end of their problems and the end of their family’s problems.” . . .

Tim Stainton, director of the Canadian Institute for Inclusion and Citizenship at the University of British Columbia, wonders if the same thing is happening in Canada, which arguably has the world’s most permissive euthanasia laws and which doesn’t keep the kinds of records that the Netherlands does.

“Helping people with autism and intellectual disabilities to die is essentially eugenics,” Stainton said.

Indeed. Now, add in the prospect of organ harvesting as a benefit to society and the acute danger to the vulnerable who can come — or be made — to think that their deaths will have greater value than their lives comes vividly into focus.

Autism, Self-Harm, and Co-Occurring Psychiatric Diagnoses

In The Politics of Autism, I write about the many challenges facing people on the spectrum.  Among many other things, they are at high risk for suicide. (In July, the United States transitioned from 10-digit National Suicide Prevention Lifeline to 988 – an easy-to-remember three-digit number for 24/7 crisis care. "

Meng-Chuan Lai et al., "Self-Harm Events and Suicide Deaths Among Autistic Individuals in Ontario, Canada," JAMA Netw Open. 2023;6(8):e2327415. doi:10.1001/jamanetworkopen.2023.27415

Key Points

Question What are the sex-stratified rates of self-harm events and suicide death among autistic individuals vs nonautistic individuals and the associated sociodemographic and clinical risk factors?

Findings In this cohort study including 379 630 individuals regarding self-harm findings and 334 690 individuals regarding suicide death findings in Ontario, Canada, autistic females had an 83% increased risk and autistic males had a 47% increased risk of self-harm compared with nonautistic individuals, when accounting for neighborhood income and rurality, intellectual disabilities, and psychiatric diagnoses. The crude hazard ratio showed that autistic females had a 98% increased risk and autistic males had a 34% increased risk of suicide death, but these increases were associated with psychiatric diagnoses.

Meaning This study suggests that psychiatric diagnoses were significantly associated with risks of self-harm and especially suicide among autistic females and males.

Autism and Euthanasia in the Netherlands

 In The Politics of Autism, I write about the dangers of eugenics and euthanasia. 

Irene Tuffrey-Wijne and colleagues have an article at BJPsych Open:Euthanasia and physician-assisted suicide in people with intellectual disabilities and/or autism spectrum disorders: investigation of 39 Dutch case reports (2012–2021)

Abstract

Background

Euthanasia review committees (Regionale Toetsingscommissies Euthanasie, RTE) scrutinise all Dutch cases of euthanasia and physician-assisted suicide (EAS) to review whether six legal ‘due care’ criteria are met, including ‘unbearable suffering without prospect of improvement’. There are significant complexities and ethical dilemmas if EAS requests are made by people with intellectual disabilities or autism spectrum disorders (ASD).

Aims

To describe the characteristics and circumstances of people with intellectual disabilities and/or ASD who were granted their EAS request; investigate the main causes of suffering that led to the EAS request; and examine physicians’ response to the request.

Method

The online RTE database of 927 EAS case reports (2012–2021) was searched for patients with intellectual disabilities and/or ASD (n = 39). Inductive thematic content analysis was performed on these case reports, using the framework method.

Results

Factors directly associated with intellectual disability and/or ASD were the sole cause of suffering described in 21% of cases and a major contributing factor in a further 42% of cases. Reasons for the EAS request included social isolation and loneliness (77%), lack of resilience or coping strategies (56%), lack of flexibility (rigid thinking or difficulty adapting to change) (44%) and oversensitivity to stimuli (26%). In one-third of cases, physicians noted there was ‘no prospect of improvement’ as ASD and intellectual disability are not treatable.

Conclusions

Examination of societal support for suffering associated with lifelong disability, and debates around the acceptability of these factors as reasons for granting EAS, are of international importance.

Suicide and Self-Injuiry

In The Politics of Autism, I write about the many challenges facing people on the spectrum.  Among many other things, they are at high risk for suicide. (In July, the United States transitioned from 10-digit National Suicide Prevention Lifeline to 988 – an easy-to-remember three-digit number for 24/7 crisis care. "

 At Autism, Theodoros V Giannouchos and colleagues have an article titled "Suicide and non-fatal self-injury-related emergency department visits among individuals with autism spectrum disorder."  The lay abstract:

This study used data for 14.4 million individuals with 43.5 million emergency department visits from all hospitals in the state of New York to explore the association between suicide and non-fatal self-injury-related (self-injury) emergency department visits and autism spectrum disorder. Overall, we found that individuals with autism spectrum disorder had more emergency department visits and admissions through the emergency department, more years of emergency department utilization, and higher prevalence of mental health-related comorbidities. Individuals with autism spectrum disorder were also significantly more likely to have at least one self-injury-related emergency department visit compared to those without autism spectrum disorder. These results emphasize the need to raise awareness across both family caregivers and healthcare providers on the increased suicide and self-injury risks that individuals with autism spectrum disorder face and to improve care delivery practices. In addition, effort to promote and increase timely access to mental health care is an urgent priority for individuals with autism spectrum disorder.

From the article:

Combined, our results suggest that while the high and growing suicide, and non-fatal self-injury rate in the United States is a concern for the entire population, it is a particular concern in the ASD community and notably among younger children and adolescents (Healthcare Cost and Utilization Project, 2020). Given existing documented issues for individuals with ASD in accessing needed care in a timely manner, many are forced to seek treatment from EDs that are often overwhelmed and not well equipped to address the specific needs of individuals with ASD (Muskat et al., 2015; Nageswaran et al., 2011; Nicolaidis et al., 2013). Our findings suggest that identifying ways to increase timely access to outpatient care—and mental health care in particular given the observed and increased prevalence of ED visits for mental health conditions among those with ASD which is consistent with previous work—is an urgent priority for individuals with ASD to provide continuous and supportive care and to prevent suicidal and non-fatal self-injurious attempts (Lytle et al., 2018). This is emphasized by previous work that found more than half of individuals who leave the ED after a suicide attempt never attend their first outpatient appointment (Lai et al., 2019). Increasing access to outpatient care will require policy changes to overcome both the shortage of mental health care providers in certain parts of the country as well as the large proportion of mental health care professionals who do not accept health insurance, such as expansion of virtual appointments, higher reimbursement rates, and reduced administrative and contractual complexity (Bishop et al., 2014; Thomas et al., 2009).

Manslaughter and Suspected Suicide

In The Politics of Autism, I write:

People with disabilities are victims of violent crime three times as often as people without disabilities. The Bureau of Justice Statistics does not report separately on autistic victims, but it does note that the victimization rate is especially high among those whose disabilities are cognitive. A small-sample study of Americans and Canadians found that adults with autism face a greater risk of sexual victimization than their peers. Autistic respondents were more than twice as likely to say that had been the victim of rape and over three times as likely to report unwanted sexual contact.

Previous posts have discussed parents who have killed or tried to kill their ASD children.  One victim was named Jude Mirra.  His killer -- his mother -- is now dead, too.

Shweta Sharma at The Independent:

A pharma millionaire who was convicted of manslaughter of her eight-year-old autistic son in 2014 was found dead in her home, hours after the Supreme Court revoked her bail.

Gigi Jordan, 62, was discovered dead around 12.30am on Friday at her apartment in Stuyvesant Heights, Brooklyn. The police are investigating the death as suspected suicide.

Jordan was convicted of manslaughtering her son Jude Mirra in February 2010 in a room of Peninsula Hotel in Manhattan. She gave her autistic son a deadly cocktail of painkillers, speeling pills, and tranquilisers mixed with juice and alcohol before she attempted to take her own life.

Her prosecutors argued that she killed him because he was emotionally disturbed and Jordan testified that he had been traumatised after being sexually abused by his biological father, Emil Tzekov, her second husband.

She was sentenced to 18 years in jail in 2015. However, her conviction for manslaughter charges was overturned in 2020 due to a procedural misstep.

Suicide Prevention

In The Politics of Autism, I write about the many challenges facing people on the spectrum.  Among many other things, they are at high risk for suicide. (In July, the United States transitioned from 10-digit National Suicide Prevention Lifeline to 988 – an easy-to-remember three-digit number for 24/7 crisis care. "

In a book titled Youth Suicide Prevention and Intervention: Best Practices and Policy Implications (eds. John P. Ackerman, Lisa M. Horowitz), Katie Johanning-Gray and colleagues have a chapter titled "Preventing Suicide in Youth with Intellectual and Neurodevelopmental Disorders: Lessons Learned and Policy Recommendations."  The abstract:

Preventing suicide in youth with autism spectrum disorder (ASD) and other intellectual and neurodevelopmental disorders (INDs) is a critical issue. In the USA, the overall number of individuals living with ASD and other developmental disabilities has been increasing in prevalence; in 2014 the prevalence of children ever diagnosed with any developmental disability was 5.76%, and this increased to 6.99% by 2016 (Zablotsky et al., 2017). Concurrent with the rise in IND prevalence is a troubling rise in the rates of suicide, with suicide now being the second leading cause of death among those between the ages of 10 and 24 in the USA (CDC, 2020). Due to gaps in our existing knowledge including a lack of validated assessment tools and suicide-specific treatments for these youth, researchers and clinicians alike grapple with how to prevent suicide in individuals with INDs. This chapter explores the evidence regarding the prevalence of suicidal ideation and behavior in this population and discusses lessons learned during the implementation of suicide prevention policies within programs serving patients with INDs at a large pediatric hospital setting.

988

In The Politics of Autism, I write about the many challenges facing people on the spectrum.  Among many other things, they are at high risk for suicide.

On Saturday, the United States transitioned from 10-digit National Suicide Prevention Lifeline to 988 – an easy-to-remember three-digit number for 24/7 crisis care. 

From HHS:

The lifeline, which also links to the Veterans Crisis Line, follows a three-year joint effort by the U.S. Department of Health and Human Services (HHS), Federal Communications Commission (FCC), and the U.S. Department of Veterans Affairs (VA) to put crisis care more in reach for people in need. This initiative is part of President Biden’s comprehensive strategy to address our nation’s mental health crisis, and is identified by U.S. Health and Human Services Secretary Xavier Becerra as a top priority at HHS. Since January 2021, the Biden-Harris Administration has made unprecedented investments to support the 988 transition, investing $432 million to scale crisis center capacity and ensure all Americans have access to help during mental health crises.

The National Suicide Hotline Designation Act, signed into law after the passage of bipartisan legislation in 2020, authorized 988 as a new three-digit number for suicide and mental health crisis. All telephone service and text providers in the United States and the five major U.S. territories are required by the FCC to activate 988 no later than July 16.

“988 is more than a number, it is a message: we’re there for you. Through this and other actions, we are treating mental health as a priority and putting crisis care in reach for more Americans,” said Secretary Becerra, who has been meeting with states across the country about the transition to 988 as part of HHS’ National Tour to Strengthen Mental Health. “There is still much work to do. But what matters is that we’re launching, 988 will be live. We are looking to every governor and every state in the nation to do their part to make this a long-term success.”

The Biden-Harris Administration increased federal investments in the 988 Suicide & Crisis Lifeline by 18-fold - from $24 million to $432 million -- to scale up crisis centers and back-up center capacity, and to provide special services, including a sub-network for Spanish language speakers.

The $432 million included $105 million in grant funding to states and territories, provided by the American Rescue Plan, to improve response rates, increase capacity to meet future demand, and ensure calls initiated in their states or territories are first routed to local, regional, or state crisis call centers. Prior to this investment, the Lifeline, which has existed since 2005, had been long unfunded and under-resourced.

The 988 Suicide & Crisis Lifeline is a network of more than 200 state and local call centers supported by HHS through the Substance Abuse and Mental Health Services Administration (SAMHSA).

“Recent investments made in the Lifeline have already resulted in more calls, chats, and texts answered even as volume has increased, but we know that too many people are still experiencing suicidal crisis or mental health-related distress without the support they need,” said Miriam E. Delphin-Rittmon, Ph.D., the HHS Assistant Secretary for Mental Health and Substance Use and leader of SAMHSA. “Over time, the vision for 988 is to have additional crisis services available in communities across the country, much the way emergency medical services work. The success of 988 depends on our continued partnership with states, as the federal government cannot do this alone. We urge states and territories to join us and invest further in answering the call to transform our crisis care response nationwide.”

FCC staff first proposed 988 in a report to Congress in August 2019 as the nationwide, easy-to-remember, 3-digit dialing code for individuals in crisis to connect to suicide prevention and mental health crisis counselors with the National Suicide Prevention Lifeline. On July 16, 2020, the FCC adopted rules designating 988 for this purpose. Recognizing the need to better support at-risk communities in crisis, including youth and individuals with disabilities, the FCC adopted additional rules in November 2021 to expand access to this important service by establishing the ability to also text 988.

“All across our country, people are hurting. They need help. The good news is that getting that help just got a lot easier. Starting tomorrow, 988 will be available nationwide for individuals in crisis, and their loved ones, to reach the 988 Suicide & Crisis Lifeline more easily,” said FCC Chairwoman Jessica Rosenworcel. “This cross-government effort has been years in the making and comes at a crucial point to help address the mental health crisis in our country, especially for our young people.”

VA administers the Veterans Crisis Line through the Lifeline’s national network. Because of VA’s partnership with the Lifeline, the Veterans Crisis Line is affected by this transition to a new number. Veterans and their loved ones can now Dial 988 then Press 1 to reach the Veterans Crisis Line.

“988 has been a long time coming and will serve as a critical resource during a crisis when every second counts. The new, shorter number will help ensure Veterans have easier access to the Veterans Crisis Line,” said VA Secretary Denis McDonough. “This launch is a whole-of-government approach in line with the President’s call to prioritize mental health by strengthening access to crisis services, and preventing Veteran suicide, our top clinical priority.”

In 2021, the Lifeline received 3.6 million calls, chats, and texts. That number is expected to at least double within the first full year after the 988 transition.

The United States had one death by suicide every 11 minutes in 2020, according to the Centers for Disease Control and Prevention. Suicide was the second leading cause of death for young people aged 10-14 and 25-34. From April 2020 to 2021, more than 100,000 people died from drug overdoses. Studies have shown that after speaking with a trained crisis counselor, most Lifeline callers are significantly more likely to feel less depressed, less suicidal, less overwhelmed, and more hopeful.

The 10-digit Lifeline number 1-800-273-TALK (8255) will continue to be operational after July 16 and will route calls to 988 indefinitely. Veterans, service members, and their families can also still reach the Veterans Crisis Line with the current phone number 1-800-273-8255 and Press 1, or by chat or text to 838255.

More information on 988 is available at www.samhsa.gov/988 and https://www.samhsa.gov/find-help/988/faqs.

Suicidal Ideation

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

At Autism,  Paige E Cervantes, Derek S Brown, and Sarah M Horwitz have an article titled "Suicidal ideation and intentional self-inflicted injury in autism spectrum disorder and intellectual disability: An examination of trends in youth emergency department visits in the United States from 2006 to 2014."  The lay abstract:

Youth suicide is a major problem in the United States and globally, but little is known about suicide risk in autistic youth and youth with intellectual disability specifically. Using data from the National Emergency Department Sample, which is the largest database of emergency department visits in the United States, we found that emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis were more common in autistic youth and youth with intellectual disability than in youth without these diagnoses (i.e. the comparison group). This was true when examining both suicidal ideation diagnoses and intentional self-inflicted injury diagnoses at emergency department visits. In addition, the number of emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis increased more from 2006 to 2014 in autistic youth and youth with intellectual disability compared with the comparison group. We also found both similarities and differences when examining factors, such as age, sex, and co-occurring mental health conditions, related to emergency department visits with a suicidal ideation or intentional self-inflicted injury diagnosis across groups that may be helpful for understanding suicide risk. It is urgent that we improve our understanding, assessment, and treatment of suicidality and self-harm in these groups through more research and clinical efforts.

An Autistic Student Killed Herself. She was Ten.

In The Politics of Autism, I write:

Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

One recent victim was just ten years old.

Jordan Miller at The Salt Lake Tribune:

The Davis School District “will be bringing in an independent investigation” to look into the bullying of 10-year-old Izzy Tichenor, who died by suicide last weekend, according to a news release.

According to the statement, the investigation will also review the district’s “handling of critical issues,” like bullying, so that it can provide a safe environment for students.

Izzy’s mother, Brittany Tichenor-Cox, said Monday that she reached out to the district several times to discuss Izzy’s treatment from teachers and classmates, but the abuse of her daughter for being Black and autistic was allowed to continue without intervention.

Just a few weeks before Izzy’s death, a report from the U.S. Department of Justice showed the district had intentionally ignored hundreds of reports of racial harassment, including incidents where Black students were called slaves, the N-word, and threatened that they would be lynched.

“The death of Izzy is tragic and devastating,” the district said in a statement. “Our hearts continue to be with the family, friends and community who are grieving this loss. The well-being of our students will always be a priority, and we are committed to preventing this from happening in the future.”

According to Fox 13, Gov. Spencer Cox said he would be meeting with the Davis School District and other districts to discuss bullying.

The district will also be providing resources to community members who are struggling with the loss. Trained and licensed therapists will be available to help children and parents facilitate conversations about feelings of depression, bullying or isolation, according to the statement.

“The tragedy of suicide can be far-reaching, and it’s not uncommon to feel grief for the loss of someone you have never met, especially if there’s a feeling of shared commonality,” the district said in the statement.

Individuals can contact the district’s Student and Family Resource Department at 801-402-5155.

Suicide and Self-Harm

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

A release from  Columbia University Mailman School of Public Health:

People with autism spectrum disorder (ASD) are at substantially increased risk of self-injury and suicide, according to a study by researchers at Columbia University Mailman School of Public Health and Columbia College of Physicians and Surgeons. They found that odds of self-harm in people with autism spectrum disorder were over three times that of people without ASD. Elevated odds of self-harm existed in both children and adults with ASD, though there were slightly higher odds in adults. The findings are published in JAMA Network Open.

It is estimated that 5,437,988 U.S. adults (2 percent) have autism. In children, prevalence estimates have increased over the past several decades due in part to improved awareness, changes in documentation, and the identification of milder cases.

“The findings from our systematic review and meta-analysis underscore the need for targeted interventions to reduce the risk of self-harm in people with autism,” said Ashley Blanchard, MD, MS, assistant professor of emergency medicine at the Vagelos College of Physicians and Surgeons. “Among the myriad of health problems facing people with ASD is the excess risk of injury morbidity and mortality. The emergency department presents a unique clinical setting for interventions to reduce self-harm and other injuries in people with autism.”

The researchers used PubMed, Embase, CINAHL, PsychInfo, Web of Science databases from 1999 through June of 2020 to identify studies on the relationship between ASD and self-injurious behavior and suicide. They identified 31 studies with a wide range of ages and self-harm outcomes. Twenty-nine showed statistically significant positive associations between ASD and self-harm, and that people with ASD were at similarly increased risk of self-injury behavior and suicide.


According to the researchers, several factors may explain the excess risk of self-harm associated with ASD. The prevalence of self-injurious behavior, such as hand-hitting, self-cutting, and hair pulling, is as high as 42 percent in the autism population. Estimates also show that 28 percent of people with ASD have co-occurring attention deficit hyperactivity disorder, 20 percent have co-occurring anxiety disorders, and 11 percent have co-occurring depressive disorders. There is also a known link between self-injury and suicide.

“Our findings are of public health importance in light of the continuing increase in the reported prevalence of autism and the high prevalence of self-injurious behavior in this population—especially relevant during a period of heightened rates of depression, anxiety, and suicide associated with the COVID-19 pandemic,” said study senior author Guohua Li, MD, DrPH, professor of epidemiology at the Columbia Mailman School, professor of anesthesiology at the Vagelos College of Physicians and Surgeons. “Further research should aim to determine the impact of co-occurring diagnoses, develop injury surveillance systems for the autism population, and implement effective prevention strategies to ensure the safety and well-being of people with ASD.”

Co-authors include Stanford Chihuri, Columbia College of Physicians and Surgeons; and Carolyn DiGuiseppi, University of Colorado Anschutz Medical Campus.

The study was supported by the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health (grant HD098522).

The Health of Autistic Senior Citizens

The Politics of Autism discusses health care, and explains that autism services can be complicated, creating difficulties for autistic people and their families. 

Brittany N. Hand and colleagues have an article at Autism titled "Prevalence of Physical and Mental Health Conditions in Medicare-enrolled, Autistic Older Adults."

The abstract:

While there is emerging evidence on the prevalence of physical and mental health conditions among autistic adults, less is known about this population’s needs during older adulthood (aged 65+). We conducted a cross-sectional retrospective cohort study of 2016–2017 Medicare data to compare the prevalence of physical and mental health conditions in a national sample of autistic older adults (N = 4685) to a matched population comparison (N = 46,850) cohort. Autistic older adults had significantly greater odds of nearly all physical health conditions including epilepsy (odds ratio = 18.9; 95% confidence interval = 17.2–20.7), Parkinson’s disease (odds ratio = 6.1; 95% confidence interval = 5.3–7.0), and gastrointestinal conditions (odds ratio = 5.2; 95% confidence interval = 4.9–5.5). Most mental health conditions were more common among autistic older adults, including schizophrenia and psychotic disorders (odds ratio = 25.3; 95% confidence interval = 22.4–28.7), attention deficit disorders (odds ratio = 24.4; 95% confidence interval = 16.2–31.0), personality disorders (odds ratio = 24.1; 95% confidence interval = 17.8–32.5), and suicidality or self-inflicted injury (odds ratio = 11.1; 95% confidence interval = 8.9–13.8). Health conditions commonly associated with advanced age in the general population (e.g. osteoporosis, cognitive disorders, heart disease, cancer, cerebrovascular disease, osteoarthritis) were also significantly more common among autistic older adults. By highlighting the significant physical and mental health needs for which autistic older adults require care, our findings can inform healthcare systems, healthcare providers, and public health initiatives seeking to promote well-being in this growing population.

Death by Suicide

In The Politics of Autism, I write:

Many analyses of autism speak as if it were only a childhood ailment and assume that parents are the main stakeholders. But most children with autism grow up to be adults with autism, and they suffer uniquely high levels of social isolation. Almost 40 percent of youth with an autism spectrum disorder never get together with friends, and 50 percent of never receive phone calls from friends. These figures are higher than for peers with intellectual disability, emotional disturbance, or learning disability. When school ends, many adults with autism have grim prospects. Though evidence is sparse, it seems that most do not find full-time jobs. Compared with other people their age, they have higher rates of depression, anxiety, bipolar disorder, and suicide attempts.

Anne V. Kirby and colleagues have an article at Autism Research titled "A 20‐Year Study of Suicide Death in a Statewide Autism Population."

Scientific Summary
Growing concern about suicide risk among individuals with autism spectrum disorder (ASD) necessitates population‐based research to determine rates in representative samples and to inform appropriate prevention efforts. This study used existing surveillance data in Utah to determine incidence of suicide among individuals with ASD over a 20‐year period, and to characterize those who died. Between 1998 and 2017, 49 individuals with ASD died by suicide. Suicide cumulative incidence rates did not significantly differ between 1998 and 2012 across the ASD and non‐ASD populations. Between 2013 and 2017, the cumulative incidence of suicide in the ASD population was 0.17%, which was significantly higher than in the non‐ASD population (0.11%; P < 0.05). During this period, this difference was driven by suicide among females with ASD; suicide risk in females with ASD was over three times higher than in females without ASD (relative risk (RR): 3.42; P < 0.01). Among the individuals with ASD who died by suicide, average age at death and manner of death did not differ significantly between males and females. Ages at death by suicide ranged from 14 to 70 years (M[SD] = 32.41[15.98]). Individuals with ASD were significantly less likely to use firearms as a method of suicide (adjusted odds ratio: 0.33; P < 0.001). Study results expand understanding of suicide risk in ASD and point to the need for additional population‐based research into suicide attempts and ideation, as well as exploration of additional risk factors. Findings also suggest a need for further study of female suicide risk in ASD. Autism Research 2019. © 2019 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals, Inc.

Lay Summary
This study examined suicide risk among individuals with autism spectrum disorder (ASD) in Utah over a 20‐year period. Risk of suicide death in individuals with ASD was found to have increased over time and to be greater than in individuals without ASD between 2013 and 2017. Females with ASD were over three times as likely to die from suicide as females without ASD. Young people with ASD were at over twice the risk of suicide than young people without ASD. Individuals with ASD were less likely than others to die from firearm‐related suicides.

From the article:

Unemployment is common among individuals with ASD, and has been posited to relate to high rates of suicidal behavior [e.g., Pelton & Cassidy, 2017]. Thus, it is notable that approximately half (49%) of the individuals with ASD who completed suicide in our sample were listed on their death certificate to either have an occupation or be a student (an additional 40% had no data). These results may imply that individuals with ASD who are employed or enrolled in school are not necessarily at lower risk for suicide. Employment is an important priority for adults with ASD, but based on our findings, we note that placement in a job should not be viewed as de facto suicide prevention. Future studies should further examine employment status with more complete data, as well as other key factors such as job satisfaction, overall quality of life, and mental health.