Lived Experiences: Autistic Girls and Women

“That is the downside of [masking].” 

Autistic girls and women said they often downplay, hide, or disguise their autistic traits to make it easier to adapt to the expectations of others. While some described camouflaging or masking as “an essential tool,” its long-term impact on their emotional health was seen as negative. Women said masking left them feeling: 

“That’s the trouble with female ASD.…” 

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). 

For some women, meeting societal expectations left them feeling taken advantage of, especially in their professional lives. One woman said, “I’ve been taken advantage of a lot . . . in a lot of situations, if somebody asks you for help your first instinct as a female is to say, sure yes, what do you need? And a lot of times . . . saying yes to some things is not the right thing to do” (Grove et al., 2023). 

“It’s the most difficult thing in the world.…” 

Several girls and women explained that co-occurring 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 

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). 

Read more about the barriers to identifying autism in girls and women. 

“It feels difficult, like other people don’t really understand your needs.” 

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). 

“I just do my best to keep functioning.” 

In a 2023 study involving interviews with 31 autistic girls and women, two additional themes were highlighted: difficulty managing daily tasks and developing a positive autistic identity.  

For girls and women in this study, the practical demands of managing a household, family, and personal finances could sometimes feel overwhelming. For some people, the sense of “overwhelm” was related to everyday social demands. For others, sensory differences and executive functioning added stress.  

One participant explained, “I definitely get overwhelmed quite easily and I struggle to manage the different parts of my life . . . I get quite focused on certain things, such as my work, and then don’t know where to fit in things like going grocery shopping and cleaning my house.”  Another individual said, “I theoretically know all the stuff I need to help organize and plan myself. But you can be so dysregulated that you can’t do any of it…all that executive function just goes really offline when your sensory system’s out” (Grove et al., 2023). 

For some of the girls and women in this study, daily functioning was complicated by puberty and menopause, which presented sensory and emotional challenges. Many said they hadn’t felt supported by their healthcare providers through these periods of change. 

“A good life on their own terms” 

One of the major themes expressed by those in the Grove study was a desire to live authentically and be accepted as they are. For some, an autism diagnosis was the beginning of self-acceptance. Said one participant, “…Being diagnosed as autistic was then just getting to this level of understanding and shedding all the layers and being myself and being able to be happy” (Grove et al., 2023).  

Another said, “I think that learning about autism at the age 41, 42 was possibly the biggest gift I could give to myself. Because I completely changed my lifestyle. The more information I received about what being autistic was for me, the more accommodations I could offer myself” (Grove et al., 2023). 

Accepting autism as part of their identity allowed many women to find a sense of empowerment and community with other autistic people. One individual said, “I love working with and hanging out with other autistic or neurodiverse individuals. The connection and communication feels much more effortless and more natural than it does with non-autistic or non-neurodiverse individuals” (Grove et al., 2023).  

“I am a unique part of the world.” 

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

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).   

“Being an undiagnosed autistic can feel like the whole world is gaslighting you.” 

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 her autism was identified: “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).  

“I feel like I’m being kicked out of my own disability.”