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.
People have contacted the service roughly 25 million times since July 2022, when the previous 10-digit telephone number officially converted to the shorter and more memorable 988. An overwhelming majority of system users in a study commissioned by the agency that oversees the lifeline said they found it helpful and potentially lifesaving.
Yet for one particularly vulnerable population, the decision to reach out can be especially complicated.
Many autistic people require additional time to process verbal information, particularly in stressful or overwhelming situations. If a question is long or laden with metaphoric speech — “feeling blue,” “get it off your chest” — the time required only expands. Some have reported being hung up on when a 988 counselor misinterpreted their silence to mean they’d walked away.
Others have struggled to make their needs understood, or found that the encounter unfolded in a way that unintentionally caused further harm.
Some years ago, before the launch of the national lifeline’s text service, Rae Waters Haight contacted a text crisis line during a challenging period. The counselor asked a routine question to assess his safety: Was there anything in his house right now that he could use to hurt himself?
Like many autistic people, Haight’s mind interprets language in its most literal sense. Mentally he scanned the rooms of his Carlsbad home, envisioning various objects and the ways they might cause harm. He had no intention of using any of these items, but that wasn’t the question he had been asked.
Yes, he replied.
Haight ended the conversation and headed to bed, telling himself he’d feel better after a night’s sleep. To his alarm, police lights soon flashed through his bedroom window. They were officers dispatched by a concerned counselor who misinterpreted his factually accurate answer as a statement of intent.
Haight is now part of a growing network of researchers and advocates working to ensure that crisis counselors have the tools they need to help autistic callers, and that autistic people and those who care for them understand what to expect from 988 and similar crisis intervention services before they need to dial.
“Misunderstandings happen frequently between autistic and non-autistic individuals, and this can be difficult at the best of times,” he said. “But during a crisis, the stakes are high.”
Autism spectrum disorder is a neurodevelopmental condition that manifests differently in nearly every person who has it. While the spectrum encompasses a wildly diverse range of behaviors, skills and communication styles, its core traits center on differences in social communication and sensory processing.
For a variety of reasons, autistic people of all ages are significantly more likely than neurotypical peers to experience suicidal thoughts and attempt suicide. In the compressed world of a 988 call, in which both counselor and caller are strangers with little information to go on besides the words they exchange, the potential for miscommunication is high.
“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.”
An autistic person’s tone of voice or emotional affect may sound to a non-autistic person as if it doesn’t match the situation’s gravity. Some are mentally soothed by repeating specific words or phrases, a phenomenon known as echolalia, which can be misinterpreted by someone unfamiliar with the trait as mocking or uncooperative.
Many autistic people also have alexithymia, a trait that makes it exceptionally difficult to identify and describe emotions, and have been stymied by questions intended to assess their internal state.
Such misunderstandings can leave the caller feeling frustrated and alone. They can also inadvertently escalate a situation.
According to 988’s confidentiality policy, counselors may share a caller’s information with people outside of the lifeline system if they believe the caller or someone else is at immediate risk of harm, and discussing an alternative safety plan directly with the caller isn’t possible.
Emergency services are contacted in fewer than 2% of calls, according to Vibrant Emotional Health, the nonprofit organization that administers 988, and most of these dispatches are made with the caller’s consent.
For many autistic people, even a slim prospect of an unwanted encounter with law enforcement or an emergency room is frightening.
“I’ve called 988, I’ve texted 988 before, and my experience was I don’t want to do it anymore. You know why? Because the police will come. And they’ll take me to the hospital,” said Kayla Rodriguez, 29, an autistic woman who lives in the Greater Atlanta area.
Although an emergency room can keep someone safe, many autistic people find its bright lights, incessant noise and unfamiliarity to be more distressing than helpful. A hospitalization during one suicidal period triggered for Rodriguez a yearlong episode of autistic burnout, a form of exhaustion in which the ability to function or tolerate stimuli plummets.
An encounter with police carries its own risks. Rodriguez was particularly unsettled by the March 1 death of Alex LaMorie, a 25-year-old autistic man who called 911 (not 988) during a suicidal crisis and was shot by responding officers after allegedly failing to drop a knife at their command.
“I wish there were more options to deal with suicidality than just the police and the hospital,” Rodriguez said. “But also, I just wish people would calm down … try to talk to us, try to engage with us and help de-escalate the situation, instead of making it worse.”
Autistic people who have called the crisis line say they don’t expect counselors to be mind readers. But they would like them to be open to adjusting their approach.
“Adapt to the person [calling]. Don’t make the person adapt,” said Andrea Bleifuss, 43, of Portland, Ore., who has worked in mental health care facilities and called the crisis line herself.
The counselors who made her feel truly understood “don’t even have to understand what I’m going through, but they do understand how to relate to someone, how to adapt whatever training they’ve had.”
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.
The sessions were voluntary, and their recordings were placed in the online library of continuing education materials available to all 988 counselors. More than 1,200 people have already viewed the training live or watched the webinars, according to Vibrant.
No single approach works for every 988 caller, autistic or not. The goal is to expand the skills and ideas a counselor can draw from when trying to form a connection.
“Across multiple trainings, we have had attendees say or put in the chat, ‘These recommendations would be helpful for anyone,’” Maddox said. “If anyone is in crisis, do they want you spewing a lot of words at them [and] having this really long, wordy conversation? Or do they want you to be concise, to the point?”
Haight is now pursuing a doctorate in autism studies at Towson University in Maryland, and hosts meetings for autistic peer support groups. His long-term goal is to create a crisis hotline specifically for people on the spectrum, staffed by counselors who are either autistic themselves or have been trained by autistic people.
Right now, 988 offers callers direct access to counselors with specialized training in supporting veterans, another population with higher suicide rates than the national average. (A dedicated option for LGBTQ+ youth disappeared last year after the Trump administration terminated its funding.) Haight believes autistic people should have something similar.
“I was convinced that a unique crisis support for autistic people must exist, given our high rate of suicidality and unique needs, so I searched for one, but I found none. What I did find was a wealth of evidence that a dedicated support should exist,” he said. “Autistic people have unique communication needs, yet crisis supports were not created with autistic needs in mind.”
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