Free, strictly confidential and available 24 hours a day via call, text or online chat 988 lifeline – Formerly the National Suicide Prevention Lifeline – one of the most accessible and effective suicide prevention tools in the US
People have contacted the service approximately 25 million times since July 2022, when the previous 10-digit telephone number was officially changed to the shorter and more memorable 988. overwhelming majority In a study conducted by the agency that oversees Lifeline, system users said they found it helpful and potentially lifesaving.
Yet for a particularly vulnerable population, the decision about whether to reach out can be especially complex.
Many autistic people need extra time to process verbal information, especially in stressful or overwhelming situations. If a question is long or filled with metaphorical speech—”feeling blue,” “get it off your chest”—the time required only increases. Some people have reported that they were hung up when 988 counselors misinterpreted their silence to mean that they had left.
Others have struggled to explain their needs, or found that the encounter occurred in a way that inadvertently caused more harm.
A few years ago, before the launch of the National Lifeline text service, Rae Waters Haight contacted the text crisis line during a challenging period. The counselor asked a routine question to assess his safety: Was there anything in his home right now that he could use to hurt himself?
Like many autistic people, Haight’s brain interprets language in the most literal sense. Mentally she scanned the rooms of her Carlsbad home, imagining various objects and ways they could cause harm. He had no intention of using any of these items, but he was not asked that question.
YesHe replied.
Haight ended the conversation and went to bed, telling himself that he would feel better after a night’s sleep. To her alarm, police lights soon began shining through her bedroom window. They were officers sent by a concerned consultant who misinterpreted his factually accurate reply as a statement of intent.
Hite 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 their caregivers understand what to expect from 988 and similar crisis intervention services before they dial.
“There is often misunderstanding between autistic and non-autistic individuals, and this can be difficult at the best of times,” he said. “But during a crisis, the risks are much greater.”
Autism spectrum disorder is a neurodevelopmental condition that manifests differently in almost every person. While the spectrum includes an extremely diverse range of behaviors, skills, and communication styles, its core symptoms center on differences in social communication and sensory processing.
For different reasons, people of all ages become autistic much more likely Experiencing suicidal thoughts and attempting suicide compared to neurotypical peers. In the narrow world of 988 calls, in which the counselor and the caller are both strangers with little information other than the exchange of words, the potential for miscommunication is high.
“Crisis counselors try to help, but end up wrong.”
“Autistic people are misunderstood and have a hard time communicating what they’re going through,” said Lisa Morgan, founder and co-president of . Autism and Suicide Prevention WorkgroupA research group dedicated to this issue. “Crisis counselors try to help, but end up wrong.”
The tone of voice or emotional impact of an autistic person may seem to a non-autistic person as if it does not match the seriousness of the situation. Some people self-soothe by repeating specific words or phrases, a phenomenon known as echolalia, which can be misinterpreted as derision or non-cooperation by an unfamiliar person.
Many autistic people also have alexithymia, a trait that makes it exceptionally difficult to recognize and describe emotions, and they become uncomfortable with questions aimed at assessing their internal state.
Such misunderstandings can make the caller feel frustrated and isolated. They may even unintentionally escalate a situation.
According to 988 Privacy PolicyIf counselors believe the caller or another person is in immediate danger of harm, they may share the caller’s information with people outside the Lifeline system, and it is not possible to discuss an alternative safety plan directly with the caller.
Emergency services are contacted in less than 2% of callsaccording to vibrant emotional health, The non-profit organization that manages 988, and most of these dispatches are made with the consent of the caller.
For many autistic people, even the slightest possibility of an unwanted encounter with law enforcement or the emergency room is frightening.
“I’ve called 988, I’ve texted 988 before, and my experience is that I don’t want to do that anymore.”
“I’ve called 988, I’ve texted 988 before, and my experience is I don’t want to do that anymore. You know why? Because the police will come. And they’ll take me to the hospital,” said Kayla Rodriguez, a 29-year-old autistic woman who lives in the Greater Atlanta area.
Although an emergency room can keep someone safe, many autistic people find its bright lights, constant noise, and unfamiliarity more disturbing than helpful. Rodriguez suffered a year-long episode, being hospitalized during a suicidal episode. autistic burnoutA form of fatigue in which the ability to perform tasks or tolerate stimuli is reduced.
encounter with police takes his own risks. Rodriguez was particularly upset Alex Lamorie died on March 1.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 on their orders.
“I wish there were more options to deal with suicide than just police and hospitals,” Rodriguez said. “But at the same time, I just want people to calm down… try to talk to us, try to connect with us and help defuse 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 adapt to the person,” said Andrea Bleifus, 43, of Portland, Oregon, who has worked in mental health care facilities and called a crisis line herself.
The counselors who really made her feel understood, “They don’t need to understand what I’m going through, but they understand how to connect with someone, how to apply whatever training they’ve received.”
Morgan, who is autistic herself, 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, he published a guide To help crisis workers assess whether the person they are talking to may 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, concise, direct questions; giving the person enough time to respond; And being open to the caller’s own suggestions about what works for them. The last page of the guide is a single sheet of tips that crisis workers can print and hang over their desks.
One tip reads, “An autistic person might say that spinning quarters is a good distraction technique for them.” “Even though this seems unusual to the crisis center worker, it is a valid and acceptable response.”
The following year, he published a A comprehensive guide for autistic adults What to expect when contacting 988. This includes the possibility of wait times (the 988 number connects to a network of over 200 individual call centers across the US and it may take a few minutes to find an available counselor) and how to sign off on a call or text chat. Earlier this year, the working group released a version for Autistic youth and their caregivers.
Then last year, they achieved a longtime goal: direct training for 988 counselors. Morgan and Maddox conducted three one-hour webinars for Vibrant, covering the basics 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 an online library of continuing education materials available to all 988 counselors. According to Vibrant, more than 1,200 people have already watched the training live or watched the webinar.
No single approach works for every 988 caller, whether autistic or not. The goal is to expand the skills and ideas that a mentor can acquire when attempting to build relationships.
“At many trainings, we’ve said to attendees or in chat, ‘These recommendations will be helpful to anyone,'” Maddox said. “If someone is in crisis, do they want you to throw a lot of words at them (and) have this really long, wordy conversation? Or do they want you to be concise, to the point?”
Hite is now pursuing a doctorate in autism studies at Towson University in Maryland, and organizes meetings for autistic peer support groups. Their 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 gives callers direct access to counselors with special training in supporting veterans, another population with a suicide rate higher than the national average. (A dedicated option for LGBTQ+ youth disappeared after the Trump administration ended its funding last year.) Hite believes autistic people should have something similar.
“I was convinced that given our high suicide rates and unique needs, a unique crisis support should exist for autistic people, so I searched for one, but I couldn’t find one. What I found was a wealth of evidence that a dedicated support should exist,” he said. “Autistic people have unique communication needs, yet crisis support was not designed with autistic needs in mind.”
