The Contribution of Invalidation on Suicidality as Reported by Autistic Adults: A Qualitative Content Analysis

Abstract

Background:

Autistic people experience a higher rate of suicidal thoughts and behaviors (STBs) than the general population and the autism community has identified suicide prevention research, including risk factors, as a priority. One risk factor may be experiencing invalidation (i.e., dismissal or minimization of one’s thoughts, feelings, behaviors, or experiences). However, no studies have asked autistic people about the perceived impact of invalidation on their suicidality. As autistic people report widespread invalidation, including of their diagnosis and characteristics, the relationship between invalidation and STBs in this population deserves exploration.

Methods:

106 autistic adults (M_age = 38.8, SD_age = 11.1) with a history of suicidality completed an online survey that asked if experiencing invalidation had contributed to STBs and, if yes, to describe the invalidation. Qualitative content analysis was used to summarize open-ended responses.

Results:

92% of respondents reported invalidation as a contributor to STBs. A range of sources were reported, most frequently parents or other family members (50%), health care providers (32%), and friends or peers (24%). The most common content was invalidation of mental health challenges (43%) and autistic traits (20%). For example, participants reported experiences of being told they were “mak[ing] things up for attention,” not believed or taken seriously, and having their sensory needs and communication differences dismissed. Some respondents reflected on historical invalidation (i.e., experienced years ago; 12%) and others shared that it was overwhelming to summarize due to the extent or frequency (11%).

Conclusion:

Most autistic adult respondents endorsed that invalidation contributed to STBs. The invalidation reported was pervasive, spanning many sources and relating to deeply personal experiences across the lifespan. These findings support the need for more research on this relationship in addition to a shift toward neuro-affirming conceptualizations of autism and mental health in community and health care settings to prevent invalidation.

Community Brief

Why is this an important issue?

Suicide prevention has been ranked as a top research priority by the autism community because autistic people are more likely to experience suicidal thoughts and behaviors (STBs) and to die by suicide. Invalidation, or having your feelings, thoughts, or experiences not believed or dismissed, is a common experience for autistic people. Some research with non-autistic people suggests that invalidation may contribute to STBs, but this has not been explored for autistic people.

What was the purpose of this study?

We wanted to learn whether autistic adults believe that experiences of invalidation contributed to STBs and, if so, more information about the invalidation.

What did the researchers do?

Our study co-lead author, an autistic woman, identified invalidation as critical to ask about in our anonymous online survey on autistic adults’ experiences with STBs. We asked 106 autistic adults if experiencing invalidation had contributed to STBs and, if yes, what was said and by whom. We used qualitative data analysis techniques to summarize responses.

What were the results and conclusions of the study?

Overall, 92% of participants responded that invalidation contributed to STBs. Participants described a range of sources and invalidation related to a variety of personal experiences. The sources mentioned most were parents or other family, health care providers, and friends or peers. Other sources included people in work, school, and community settings. The most common content was invalidation of mental health challenges and autistic traits. For example, not being believed when reporting distress, being accused of attention-seeking, having their sensory needs dismissed, and having their communication differences misunderstood. Some participants shared that responding was overwhelming because of the extent or frequency of invalidation, and some wrote about invalidation that occurred years ago.

What is new or controversial about these findings?

This is the first study that asks autistic adults whether experiences of invalidation contribute to STBs. These results tell us that invalidation is common, that it comes from multiple sources, and often relates to deeply personal experiences such as mental health challenges and autistic traits.

What are potential weaknesses in the study?

The way the questions were worded may have led participants to the answers our team was interested in. We also could not ask participants to clarify because it was anonymous. In addition, our participants do not represent the entire autism community because they had to access the internet and be able to write in English, and most were White, female, late-diagnosed, and highly educated. Since many participants found the study through the research team members’ social media, they may already have been engaged in research and advocacy.

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

We hope our findings integrate autism community knowledge into scientific evidence and affirm the invalidation experienced by autistic people as real and deeply impactful. Our results reinforce the idea that efforts to increase acceptance and understanding of autistic people must center their perspectives and lived experiences to decrease invalidation. These efforts are needed for both community members and professionals.