A new study provides insight into the lives of over 1,400 autistic women and nonbinary adults, highlighting both strengths and challenges across education, employment, and mental health. While many participants had completed higher education and were employed or in relationships, the study found that those diagnosed in adulthood reported more psychiatric conditions, higher rates of suicidal thoughts and self-harm, and fewer self-perceived strengths. The findings, published in Autism Research, point to a need for more research and tailored support for this often-overlooked population.
Autism is a developmental condition characterized by differences in social communication and restricted or repetitive behaviors. While research and diagnosis have traditionally centered on boys, more recent efforts have drawn attention to the ways autism may present differently in women and nonbinary people. Females are less likely to be diagnosed in early childhood, in part due to more subtle behavioral signs and greater likelihood of “masking,” or consciously imitating neurotypical social behaviors.
Women and gender-diverse individuals have also been underrepresented in clinical studies due to narrow inclusion criteria, diagnostic biases, and the tendency of researchers to exclude people with co-occurring intellectual disabilities, who are disproportionately female. As a result, there has been limited understanding of what life looks like for autistic women and nonbinary individuals beyond childhood—especially those who are diagnosed in adulthood.
The researchers behind the new study set out to better characterize this population by assessing a wide range of factors, including education, employment, relationships, psychiatric history, and self-perceived mental health. A second goal was to explore how outcomes differ between those diagnosed in childhood versus adulthood, with the aim of understanding how timing of diagnosis may shape long-term experiences and needs.
“My research focuses on diverse experiences of autism, including adult populations and autistic females,” said study author Maire Claire Diemer, a clinical psychology postdoctoral fellow at the Medical University of South Carolina. “It’s important to me to fill this gap in the literature and represent what I can as accurately as I can about broader experiences of autistic presentations. Research has often excluded adults, women, and people with co-occurring intellectual disabilities which means that the literature does not always reflect their experiences. This can have clinical implications for care as well.”
The study used data from SPARK, a large national research cohort in the United States that includes over 100,000 autistic individuals and family members. The sample for this study included 1,424 participants who identified as women or were assigned female at birth and identified as nonbinary. All participants were age 18 or older and had received a professional diagnosis of autism either in childhood or adulthood.
To be included in the analysis, participants had to provide independent consent and complete several self-report forms about their demographic background, medical and psychiatric history, and psychological functioning. Individuals under guardianship or with uncertain autism diagnoses were excluded to ensure reliability of the data.
Participants completed a standardized psychological questionnaire known as the Adult Self Report, which assesses areas such as internalizing symptoms (like anxiety and depression), externalizing symptoms (like aggression and rule-breaking), substance use, adaptive functioning, and personal strengths. The researchers also collected information about participants’ education, employment, income, romantic relationships, and sexual orientation.
The researchers then compared the responses of those who had been diagnosed before age 18 with those who had received a diagnosis in adulthood. They used statistical methods to control for age at enrollment, since those diagnosed as children were, on average, younger at the time of the study.
The average age of diagnosis among the full sample was 24 years, but there was wide variability. Those diagnosed in childhood were typically diagnosed around age 9, while those diagnosed as adults received their diagnosis at an average age of 32. Nearly two-thirds of the sample had been diagnosed after turning 18.
Despite the challenges often associated with autism, many participants reported positive life outcomes. More than half were employed, and over 80 percent had completed some post-secondary education. Nearly one-third were married, and more than half reported having a romantic partner. Those diagnosed in adulthood were more likely to have a four-year college degree, full-time employment, and higher household incomes than those diagnosed in childhood.
At the same time, rates of co-occurring psychiatric conditions were high. Around 70 percent of participants reported a history of anxiety, and 62 percent had been diagnosed with depression. Eating disorders were reported by 17 percent of the sample, and almost 9 percent had a substance use diagnosis. A third of all participants reported experiencing suicidal thoughts, and 21 percent said they had engaged in self-harm.
Diemer was particularly surprised by the high rate of suicidal ideation and behavior. “While I feared there would be increased risks, the high rate still shocked and concerned me,” she told PsyPost. “We have really limited research into what might be driving this or what we can do to be preventative on this front.”
When comparing the two groups, those diagnosed as adults were significantly more likely to report psychiatric conditions. They were more likely to have anxiety, depression, and eating disorders, and reported higher levels of substance use. On average, they also scored higher on internalizing and externalizing problem scales and lower on measures of personal strengths.
These patterns held even after controlling for other demographic variables like age, education, employment, and parenthood. Later age of diagnosis remained a significant predictor of psychological distress. The researchers suggest that these differences may reflect the cumulative impact of going through childhood and adolescence without the support or self-understanding that a diagnosis can provide.
The study also found elevated levels of suicidal ideation and self-harm among participants who identified as gender-diverse or as part of a sexual minority. While 14 percent of cisgender heterosexual participants reported self-harm or suicide attempts, the rate was nearly 27 percent among those identifying as queer or gender-diverse. Suicidal thoughts were endorsed by 41 percent of gender and sexual minorities, compared to 26 percent of cisgender heterosexual participants.
“I think the biggest concern here is the high rate of suicidal ideation and behavior,” Diemer said. “As researchers, we expected higher rates of co-occurring concerns in this sample compared to a neurotypical sample based on prior findings. However, more than two thirds of our sample had depression diagnoses, and overall rates were much higher than even we expected. Supports for autistic adults is extremely limited, and more wraparound services and mental health care with specialized focus is needed.”
Although the study provides important insights, it is not without limitations. The sample was overwhelmingly white and highly educated, which may not reflect the broader population of autistic women and nonbinary people. The participants were also self-selected and enrolled in a research study requiring internet access and independent consent, which may have skewed the sample toward individuals with lower support needs and higher cognitive functioning.
“This sample is not as racially diverse as the population as a whole; over-representation of the white female autistic perspective means that the generalizability of the findings are limited,” Diemer said.
Despite these caveats, the authors argue that the findings point to clear directions for future research and clinical care. In particular, they emphasize the need to understand the lived experiences of those who receive an autism diagnosis in adulthood. They also highlight the importance of developing targeted mental health interventions that address the specific challenges faced by autistic women and nonbinary individuals.
“I’m hoping to continue examining data we have on autistic females, and hopefully presenting some other findings from this sample soon,” Diemer said.
The study, “Comparative Analysis of Autistic Women Across the Lifespan: Childhood vs. Adulthood Diagnosis,” was authored by Maire Claire Diemer, Rosmary Ros-Demarize, Catherine C. Bradley, Stephen Kanne, So Hyun Kim, Julia Parish-Morris, LeeAnne Green Snyder, Ericka Wodka, SPARK Consortium, and Laura A. Carpenter.