Published May 21, 2024 by Zencare Team
Imagine learning everything you can about a topic at your local library only to learn that your library merely has one-tenth of the books in existence on that topic. The exclusion of the other 90% of the books skews your understanding, leaving you with an incomplete picture. This is similar to the current understanding of autism in women and girls, as our understanding about autism disorders draws heavily from research based on large samples of autistic men and boys, without enough regard for gender differences.
In this blog, we’re exploring autism for women and girls, including patterns of masking and experiences of diagnosis. We’ll be using identity-first language according to the preferences of The Autistic Self Advocacy Network, which puts forward that autism is a core identity for many people and a source of meaning and strength, so it’s preferred to use wording like “autistic woman” rather than “woman with autism.”
Disclaimer:
When we’re talking about autism in women and girls, we’re talking about gender rather than sex. While much of the research on autism refers to sex — that is, the chromosomal makeup and anatomy of an individual — our discussion centers around gender. With gender, we’re encapsulating a person’s self-identity and their sense of self, whether that’s as a man, woman, or non-binary person.
What is autism?
According to Healthline, autism — also called Autism Spectrum Disorder (ASD) — is a spectrum of neurodevelopmental conditions marked by behavioral, social, and communication symptoms. Autistic people tend to experience challenges in their interactions with other people and may engage in restrictive or repetitive behaviors.
What are common symptoms or traits of autism?
It’s important to point out that everyone’s autism symptoms look different and their impact on daily life also varies. When speaking generally, the Center for Disease Control (CDC) provides the following symptom or traits for autistic individuals:
- They find it challenging to make or maintain eye contact with other people. This may lead to difficulties in conversation with other people, including peers, classmates, or colleagues. Some autistic people also find it challenging to listen to other people when they’re talking.
- They get overwhelmed by sensory input. Loud noises or bright lights may be distracting to the point of impairment, making it difficult for autistic people to enjoy settings often sought out by other people like concerts or malls. This can have serious consequences when it comes to getting enough sleep or when other people initiate physical contact such as reaching for a hug or patting their arm.
- They get really into one topic. Some autistic people get heavily interested in certain topics and spend their free time learning everything they can about that topic, such as certain animals, sports, historical events, and more. This can also look like becoming obsessed with certain words or phrases, repeating them throughout the day.
- They find it hard to regulate their emotions. For autistic people, emotions might be difficult to understand or identify. When feeling emotionally heightened, autistic people may experience distress. For autistic children, this can lead to what appears to be tantrums or fights with their parents.
- They rely on routines. Routines for autistic people may be painful to break, and when these routines get disrupted, it can be challenging to continue with the day or to overcome feelings of distress that come up. Change of any size can be challenging for autistic people.
- They feel like conversations are complicated and that they take work to carry. Because many autistic people find it difficult to read other people’s body language or conversational subtext, they can struggle with everyday conversations. They might also display incongruous facial expressions or body language for the occasion — appearing to be apathetic towards the topic from the perspective of someone neurotypical, when in reality they are interested.
- They engage in specific stimulation. Some autistic people engage in “stimming,” which are repeated stimulating behaviors. These stims provide the individual with pleasure or comfort and can look like rocking back and forth, tapping their fingers, or tugging on their hair.
The common traits shared above were developed through research with majority male participants, skewing the literature’s understanding of the condition. While autistic women and girls certainly display the symptoms described by research, there simply hasn’t been enough research yet to describe whether there are any other main symptoms of autism in women and girls. This can impact diagnosis and treatment.
Autism is currently understood as a spectrum, so autistic individuals may display the above symptoms at different levels with a range of impacts on daily life. Others, however, can experience interruptive symptoms which can lead to challenges in the workplace or in their relationships.
How are autistic traits different in females?
UCLA Health shares that autistic women and girls tend to have more internalized symptoms, rather than the more behavioral symptoms that autistic men and boys show. This means that their symptoms may impact their inner worlds rather than the people or environments around them. For example, a young autistic boy might yell at a classmate during recess while a young autistic girl might resort to spending recess by herself at the far side of the playground. Over time, this internalization can lead to mental health challenges like depression or anxiety, which can have a huge impact on a person’s well-being.
Autistic women might also mask their symptoms more, leading to less obvious social challenges. Whether because of the biological or socialization impacts of gender, autistic women and girls tend to show fewer social difficulties in their relationships. Their interests, should they engage in heightened interest in specific topics, might also more closely align with what’s considered appropriate for women and girls, which can also camouflage autism.
Why might these differences exist?
There are many reasons why autistic women and girls’ experiences differ from their counterparts, though it’s important to again note the lack of research on this topic. Healthline puts forward that there may be a case for biological differences in the presentation of autism across genders, though socialization and gender norms may also play a role. Autistic individuals still receive the same gendered messaging about what women and girls should be like, which may influence how their symptoms manifest.
How do I know if I am autistic?
There’s no medical test, like a blood sample, MRI or CT scan, to determine whether someone is autistic. Psychiatrists, psychologists, and neuropsychologists are the only professionals who can make autism diagnoses. These diagnoses come only after several rounds of assessments and interviews with family members, teachers, or friends, making the process time intensive, and not to mention expensive.
While there are many free tests online to help individuals explore whether they might be autistic, these tests lack the comprehensive approach that a mental health professional would take as well as support throughout the process. However, these tests are a good way to explore the topic and to start conversations about what an autism diagnosis would mean to you.
How can I get tested for autism?
To get tested for autism, look for a mental health professional with the appropriate training and certification to provide autism testing. You can ask your primary care doctor for a referral to a specialist, or you can use the Zencare therapist directory to find mental health providers who are qualified to make autism diagnoses by filtering by the Specialty “Autism Spectrum Disorder”.
Some people find that getting tested for autism is less important, especially considering many therapists offer mental health services to support autistic people or people with autistic traits even without a diagnosis.
What does it mean if I get diagnosed as autistic?
If you receive an autism diagnosis, it can mean whatever you want it to! Neither outcome (nor anything in between) is better than the other! For many people, having an autism diagnosis can be validating and affirming. It can give them a helpful reference point or context for challenges in their lives or it can help them find supportive communities for neurodiverse folks. Some people are also eligible for accommodation at work or at school, which can greatly boost their comfort throughout the week.
For others, getting an autism diagnosis might not change anything in their lives, and they continue to live just as they did before the diagnosis. In the end, a diagnosis doesn’t change who a person is — and it certainly doesn’t change anyone’s value, worth, or the respect that they deserve.
Therapy and autism
While only certain types of mental health professionals can diagnose autism, there are many more therapists who can provide support for those with autism. Autistic individuals may work with a therapist to unpack the impacts of autism on their lives, provide support through interpersonal or relationship conflicts, or simply offer an empathetic ear.
Because autistic women and girls tend to internalize their symptoms, working with a therapist can be beneficial when it comes to getting help with anxiety or depression. They can also help with other co-occurring mental health conditions or neurodiverse diagnoses like ADHD.
By understanding autism through a gendered lens, there’s an opportunity for more woman and girls to explore their autism symptoms and get the support they need to live healthy, connected lives.