Understanding undiagnosed autism in adult females

undiagnosed autism females blog

Autism spectrum disorder (ASD), known also as “autism,” is a neurodevelopmental condition typically diagnosed in childhood. But some people, specifically people assigned female at birth (AFAB), may go undiagnosed until adulthood.

Traditional estimates find that boys are four times as likely as girls to receive an autism diagnosis. But experts are realizing that almost as many females as males may have autism — recent research shows that nearly 80% of autistic females are undiagnosed as of age 18.

An autism diagnosis can be a relief for many adults. It may explain symptoms they’ve always had but have never been able to explain. It can also open doors to much-needed health resources and support.

Here’s what you need to know about autism in adult females:

Why autism in females may go undiagnosed

There’s no medical test to identify autism. Health care professionals rely on the information they gather from a person’s developmental history, symptom assessments and behavior to reach a diagnosis. To diagnose autism, the physician must have evidence of both:

  • Impairments in social communication and interaction
  • Restricted, repetitive behaviors

But in people assigned female at birth, evidence of autism isn’t always easy to identify because:

Autism was traditionally considered a “male” condition

For many decades, experts assumed autism occurred more in males than females. Most autism research relied on male participants and examples, so what is known about autism is largely based on autism in males. As a result, boys are referred for autism diagnosis 10 times more than girls.

Physicians still don’t have a strong understanding of autism in females. The autism assessment tools detect and measure known ASD traits — established on a male baseline. Identifying autism in females is harder if their traits don’t match what’s traditionally considered ASD.

Autism looks different in females, especially during childhood

In comparison to males, young females may have different autism traits. And those signs aren’t always far enough outside socially acceptable norms to be noticeable.

Autism traits in girls may include:

  • Fewer social difficulties: Females report more sensory symptoms and fewer communication difficulties than males. They tend to be more socially motivated to form friendships and find ways to participate in conversations with others.
  • Internalized symptoms: Boys managing autism may experience obvious difficulties with sitting still, aggression or conduct. Girls are more likely to respond to autism internally, developing anxiety or depression. Their response may look like shyness — a socially acceptable norm for girls.
  • Typical restricted interests: Children with autism (girls and boys) often showcase a uniquely intense or strong interest in one thing. In girls, that thing tends to be something other girls that age also enjoy (such as horses or celebrities), so the behavior doesn’t call attention.

There’s limited research on how autism traits change across a lifespan. The existing studies show that autistic females may have better social and communication abilities in childhood. But once they reach adolescence and adulthood, they exhibit more severe social and communication difficulties than males.

Females tend to mask signs of autism

Research shows that unless an autistic female has cognitive or behavioral issues, they are usually diagnosed later. Experts believe family, teachers and primary care physicians may miss the signs because autistic females tend to camouflage their symptoms (called “masking”).

Young females typically are more motivated than males to fit in and be social. Females with autism learn or mimic socially acceptable behavior by watching television shows, movies and the people around them. They may copy the facial expressions of others to hide social communication challenges. Those efforts can cause mental exhaustion, stress and anxiety.

Signs of autism in female adults

Undiagnosed people assigned female at birth may spend years and even decades feeling like something is wrong with them, though they aren’t sure what. They may learn to fit better into what they perceive as socially acceptable. But their autistic traits remain and continue to pose challenges.

Adult females with autism may experience:

Social difficulties

Autistic people often have trouble reading and responding to social cues, leaving them anxious before a social situation and after — worrying about their behavior. They may desire to be sociable and do better one-on-one than in social groups. Autistic adults may struggle to make eye contact but force themselves to do it even though it is difficult and uncomfortable.

Sensory sensitivity

A heightened sense of smell, light, sound or touch can overload the senses of an autistic adult. Some sensory sensitivities may be so strong that they must remove themselves from the trigger. Autistic female adults may have difficulty sleeping because of sensory issues — a partner’s breathing or the light from an alarm clock may be hard to tolerate.

Difficulty with self-regulation and executive function

Autism can make it hard to stay organized or finish tasks — especially if the person affected doesn’t find those tasks interesting. Their working memory, self-control and ability to adapt thinking may present challenges, especially at work. Adults with autism may struggle to manage their emotions and stay emotionally in control — meltdowns may include crying or displaying a temper.

Intense interests

Females with ASD tend to obsess over their interests, even in adulthood — they need to know every fact and focus on every detail. But they may have a broader range of special interests than autistic males, who tend to hone in on one subject. Adults with autism often choose careers and hobbies that require intense focus.

Repetitive behaviors

Autistic people may adopt certain repetitive behaviors — “stimming” or self-stimulating behavior — to help them self-regulate. Typical stimming behavior includes rocking, repeating words or phrases and hand flapping. Repetitive behaviors may become more refined and socially acceptable in adulthood, including skin picking, pacing or twirling hair.

Co-occurring conditions

Autism isn’t degenerative — it doesn’t get worse over time — but autistic people often develop other disorders after living with autism for some time. Coexisting conditions are more common in females than in males, especially when diagnosed later in life. They may not have gotten the care and services they needed as children.

Autistic adult females may experience:

 If you think you may have autism …

You don’t need a diagnosis to see specialists who help autistic people. But a diagnosis may provide access to therapy and support programs, and help you get health insurance coverage to pay for those services. You may also be eligible for resources under the Americans with Disabilities Act (ADA).

Consult your primary health provider, who can connect you with specialists and resources that can help. You should also consider mental health counseling, especially if you have co-occurring conditions.

Take the Next Step

If you suspect you may have autism, reach out to your primary care physician.