Lived Experiences: Autistic Girls and Women

An autism evaluation is a rich and fluid interaction, shaped by so much more than test scores. Even within a formal autism assessment, there are many opportunities to share authentic connection. One of the most valuable is the chance to listen to the lived experiences of autistic girls and women.

Learning about girls’ experiences can broaden the established view of autism. That view is largely based on research that involved many more boys than girls. Listening to the ways girls and women experience autism does not change the diagnostic criteria, but it can reveal more about how core autistic traits are expressed differently across sexes and genders.

In that way, listening can help shrink the diagnostic gap. And it can help to repair people’s trust in systems that have not always been responsive to their needs. 

Research as Perspective-Taking 

A growing number of researchers are publishing studies that center the voices of autistic girls and women. In a study published in 2019, a small group of autistic girls and their mothers shared their perspectives and described their experiences. Researchers found several consistent themes. 

Many of the girls in this study felt a persistent sense that they did not feel they “fit in” to the world around them. One participant said it this way: “It kind of feels like you’re an outsider looking in and like there’s this world that you’re just kind of observing from the outside and when you have to get directly involved in it, it can be a bit hard sometimes” (Milner et al., 2019). 

The feeling of being an outsider was particularly strong around friendship. Many of the girls in this study said they wanted friends and social connection but were unsure how to go about it. Some had trouble making friends. Others were adept at making friends but had trouble maintaining friendships over long periods.  

In a similar 2017 study, one autistic woman described her childhood social relationships as having “an invisible glass barrier between me and them.” The sense of isolation was so severe, she recalls having had suicidal thoughts as early as 7 years old (Kanfiszer et al., 2017).  

For many autistic girls and women, sex, gender, and autism intersect to create obstacles that may not exist for autistic boys and men (Milner et al., 2019). For example, gender norms and expectations posed a particular challenge to the girls and women in this study. Some said society expects girls to “gather round and talk and/or watch things and chat and gossip.” That need to conform to social communication norms caused extra stress and, in some cases, a sense of estrangement.  

For some, stereotypically female gender presentation was its own challenge. “I’m no good at being a girl,” one participant said. 

Others said they felt autistic boys and men might feel less pressure to mask or camouflage. One woman said, “What I get down about is feeling like I should have to interact, and they’re more happy to say, like, ‘No, I wanna do my own thing’” (Milner et al., 2019). 

Several girls and women explained that conditions like anxiety, depression, and sensory overload were far more distressing than autism. One participant noted that “the anxiety that stems from it, more than anything else” kept her from taking advantage of opportunities (Milner et al., 2019). 

Some girls said the most difficult aspects of autism were 

• memory problems; 
• meltdowns; 
• shutdowns; 
• navigating relationships and sexuality; 
• being vulnerable to predatory attentions; and 
• feeling different.  

For some people, being mistakenly diagnosed with another condition (such as bipolar disorder) delayed an autism diagnosis. One blogger wrote, “I felt tied to the diagnosis I had and even though my heart knew it wasn’t right, my rigid thinking made me cling to it for far too long” (Harmens et al., 2022). 

According to Milner et al., autistic girls and their mothers said too few people understood the nature of autism in girls and women. For many, the lack of understanding left them feeling isolated. For some, the perceptions of outsiders added stress on the family.  

“I think it would be nice,” said one participant, “for people to realize that autism can affect girls”  (Milner et al., 2019). 

Despite the challenges, many girls and women appreciated their differences. Among the benefits of autism cited in the Milner study were: 

• a strong sense of justice 
• a well-developed moral compass 
• an outstanding memory 
• a unique perspective on the world 
• the ability to pay attention for long periods 
• greater creativity 

Blogs as Windows Into Lived Experience 

Several researchers have explored the experiential data in public-facing blogs authored by autistic women. In a 2022 study, a team of researchers identified three themes running through several such blogs: self-acceptance, acceptance by others, and exhaustion (Harmens et al., 2022).   

For many bloggers, autism diagnosis was a powerful experience. Characteristics and habits they hadn’t previously understood suddenly made sense. Many were able to seek support and accept themselves. 

“The relief and empowerment I felt when I was diagnosed…were overwhelming” (Harmens et al., 2022). 

That’s not to say every response to autism identification was positive. Some bloggers expressed regret that autism hadn’t been identified sooner.  One blogger reflected on the lack of understanding in her childhood, before autism was diagnosed: “You’re being told every day that your lived experience isn’t real. There have certainly been times that I have doubted my sanity” (Harmens et al., 2022).  

After diagnosis, some bloggers found acceptance and solidarity with other autistic people. But others said their relatives doubted the diagnosis, leaving them with the feeling that they were imposters. 

“When I finally told the people around me about my diagnosis, the range of responses ran from skepticism to ‘Oh, I suspected it years ago.’…Part of me is still sure that one day someone will point at me and say ‘faker!’” (Harmens et al., 2022) 

Stereotypes about autism frequently fed into the sense that someone was not autistic enough. One blogger wrote, “I feel like they’re saying I’m fundamentally different from a LOT of other people with autism, the REALLY REAL PEOPLE WITH AUTISM, probably” (Harmens et al., 2022).

One pervasive feeling among bloggers was that of feeling depleted. Often, the need to camouflage autistic traits was the cause. “I could appear fairly ‘normal’ for stretches of time,” one blogger observed, but her “chameleon skills” then left her “drained…completely” (Harmens, et al., 2022). 

Similar feelings were expressed in other studies, too. Speaking of the effort involved in camouflaging, one study participant said, “It’s kind of like a duck on water, you know. It’s calm on the surface but sort of paddling really hard underneath” (Milner et al., 2019).  

People also said they were exhausted by fear of the diagnostic process and by the need to explain themselves to other people repeatedly. The latter was especially strong for those who didn’t match the stereotypes of autism. 

Key Messages   

Listening to the lived experiences of autistic girls and women can lead to a fuller, more nuanced understanding of autism. It can help to dismantle stereotypes and facilitate more accurate, timely diagnoses. And valuing the voices of autistic girls and women can foster a sense of belonging and acceptance that is vital to good mental health and supportive relationships. 

WPS Assessment Consultants are available to help you plan comprehensive autism evaluations that include trusted assessments and intervention resources. 

AUTISM RESOURCES  

Further Reading on Autism 

• The WPS In-Depth Guide to Autism and ADHD  
• How Autism Can Look and Feel Across the Lifespan 
• Why So Many Autistic Girls & Women Are Still Missing Out on Early Identification 
• Understanding the Complicated Interplay of Autism and ADHD 
• How Autism and ADHD Can Disrupt Interoception 
• How to Choose the Best Autism Assessment for Your Client 
• Best Practices in Autism Assessment 
• Autism Conversations: Individualizing Educational Interventions with the MIGDAS-2 Evaluation Process 

Videos and Webinars on Autism 

• How Cyberbullying Impacts Students On and Off the Autism Spectrum 
• Conversation Over Labels: A Better Way to Understand Autism 
• Autism Spectrum Brains 'Get Energy' from These Things