Autistic US Adolescents and Young Adults’ Opinions About the 988 Suicide & Crisis Lifeline: A Qualitative Analysis of an Open-Ended Survey Question

Abstract

Background:

The 988 Suicide & Crisis Lifeline (“988”) in the United States provides people experiencing suicidal ideation or distress with free access to trained counselors via text messaging, phone calls, or online chats. The present qualitative study investigated the following research questions: (1) What opinions are held by U.S.-based autistic adolescents and young adults ages 13–22 years old about 988; and (2) What have autistic adolescents and young adults experienced when they contacted 988 for help?

Methods:

Self-report online survey data were collected from English-speaking individuals ages 13–22 years old in the United States between June 2022 and October 2023 as part of a larger, parent study called Project Lift Up. Of the 295 participants who reported that they were autistic, 188 (64%) submitted a write-in response to a question about why they would or would not use 988. We used a content analysis approach to identify themes related to why they would or would not want to use 988.

Results:

Autistic individuals reported mixed opinions about the U.S. 988 Suicide & Crisis Lifeline. While some liked the idea of talking to a stranger or trained counselor when in crisis, others expressed anxiety about the idea that emergency services could be dispatched and questioned the preparedness of counselors to support their complex and unique needs as autistic people. Among those with direct experience with 988, some reported problems included long wait times, feeling like the counselor was using a script or interacting in a robotic way instead of authentically, and that the counselor was not able to communicate with the autistic user in a manner that felt supportive to them.

Conclusions:

Upgrades to 988 that will result in better crisis support for autistic people are needed, feasible, and should be evaluated.

Community Brief

Why is this an important issue?

The U.S. 988 Suicide & Crisis Lifeline (also called “988”) is supposed to help people who are feeling suicidal or very upset. We do not know if autistic people are likely to call, text, or chat 988. Some autistic people may have heard things about 988 that stop them from using it. Meanwhile, there are autistic people who have used 988. We want to know what those autistic individuals experienced when they contacted 988.

What was the purpose of this study?

This study was designed to find out the opinions of U.S.-based autistic adolescents and young adults about 988. It was also designed to find out about what autistic adolescents and young adults have experienced when they contacted 988.

What did the researchers do?

The researchers advertised a survey to the youth in the United States who were 13–22 years old as part of a research project about suicide called Project Lift Up. The researchers included questions about 988 on the survey, and they included a question about autism status. This research study focused only on the people who said they were autistic and that they had heard of 988. The researchers looked at what the individuals (N = 188) wrote when they were asked if they would use 988 or not. The researchers used qualitative data analysis methods to code the written-in answers, study the patterns, and group the patterns into themes.

What were the results and conclusions of the study?

The autistic people in this study had some positive expectations about 988, and among those with direct experience using 988, some had found it helpful. For example, some autistic people said it helped them when they wanted to hurt themselves, and some autistic people who had never used 988 said they thought it would be a good resource in case they were feeling distressed. However, many more autistic people felt unlikely to use 988, either based on things that they had heard or thought might be true about 988 or based on direct experience that they had with 988. Autistic people who had not used 988 wrote that they were scared that emergency services would be dispatched if they used 988. They also wrote that they were concerned that 988 would not know how to meet their specific needs, and some wrote that they would not use 988 because they dislike making phone calls (and they did not realize that 988 also has text and chat options). Among the autistic people who had used 988, reasons that they might not use it again included the long wait times and feeling like the counselors were unable to say or do things that helped them.

What is new or controversial about these findings?

988 offers an important service that many people find very helpful. However, it may still need to be improved to meet the needs of some autistic people.

What are potential weaknesses in the study?

People could self-select to participate in the research survey, and the people who chose to fill out the survey might represent a special subset of all autistic people rather than a representative subset. It is also possible that some autistic people who reported that they had used 988 were remembering a different hotline, so their criticisms might not be specific to 988.

How will these findings help autistic adults now or in the future?

These findings will help autistic adults advocate for improved crisis line services in the United States and elsewhere to benefit autistic people in crisis. The findings also help explain why some autistic people may not have their needs met by 988 and document that some autistic people think favorably about the possibility of using 988.