The Underrepresentation of
Autism and ADHD Diagnoses
by Bri Allison
Recently, the internet and social media platforms, such as TikTok, have been full of women sharing their personal experiences with autism and ADHD. More specifically, they’re talking about the underrepresentation of these conditions in women and how it took years for them to be diagnosed. However, this isn’t a new conversation. There has been growing concern and research conducted about the lack of diagnosis or late diagnosis of these disorders in women.
What is Autism?
Autism spectrum disorder, more commonly referred to as autism, is a developmental disorder that affects the way someone behaves, socializes, and communicates. The condition is caused by differences within the brain. Autism is a broad spectrum of symptoms and severity that ranges from person to person. When a person has autism, they are often described as being “on the spectrum.”
Because the symptoms are never the same from one person to the next, it can sometimes be difficult to diagnose someone with the condition, especially for women. According to the Asperger / Autism Network, the current data shows that one woman is diagnosed with autism or Asperger’s for every four men who are diagnosed. And nearly 80% of women that have autism are misdiagnosed with another condition, commonly ADHD.
What is ADHD?
Attention-deficit / hyperactivity disorder, which we know as ADHD, is a neurodevelopmental disorder that is one of the most common disorders that children are diagnosed with. The person diagnosed may have trouble focusing or paying attention, controlling their impulses, and settling their hyperactivity. Although ADHD is typically diagnosed in children, adults can still suffer from these symptoms.
Similar to autism, ADHD in women can be overlooked or misdiagnosed. According to the Center for Disease Control and Prevention, 5.6% of women were diagnosed with ADHD, while 12.9% of men were diagnosed.
Why are women’s symptoms being overlooked and underdiagnosed?
So why is gender playing such a large factor in the diagnosis of autism and ADHD? Well, there are actually quite a few answers to this question. However, the biggest difference between men and women regarding these disorders is their signs and symptoms. With both disorders, women tend to have subtler or different symptoms than the “norm.” Women are also better at hiding or camouflaging their symptoms. This can lead to a misdiagnosis such as bipolar disorder, personality disorders, eating disorders, depression, or anxiety.
For example, a woman who has autism may be more aware that she is different so she may work hard to disguise or hide her symptoms. Maybe she’ll force herself to make more eye contact, imitate expressions and body language, or prepare phrases and things to say before taking part in a conversation.
Now, let’s look at an example when it comes to ADHD. Women who have ADHD typically show less hyperactivity/impulsivity and more inattentive symptoms. And again, they have a tendency to hide and internalize their symptoms. Because women’s symptoms aren’t as disruptive, they don’t fit the ADHD stereotype. This leads to their symptoms often being overlooked or misdiagnosed.
Gender norms also play a part in the underrepresentation of women with ADHD and autism. The media positively portrays men who have symptoms such as spontaneity, high energy, and impulsiveness. And if men show one or some of the symptoms of the conditions such as disorganization, a preference for being alone, trouble recognizing simple social cues, etc. they are more easily “forgiven” or dismissed. However, if a woman shows any of the symptoms listed above, they’re typically judged and viewed negatively. This is another reason that women have a tendency to conceal their symptoms.
Another contributor to the underdiagnosis of the disorders is that they’re both seen as “male disorders.” Since autism and ADHD affect more men than women, the tools used to diagnose these disorders are formulated more for men. This makes it harder for women’s symptoms to be recognized by the tests.
The challenges women can face because they’re not properly diagnosed
Autism and ADHD are both lifelong conditions so there is no cure and you can’t “grow out of it.” However, left untreated, symptoms can intensify especially as hormones change. ADHD is specifically affected by estrogen so during puberty, menstruation, and later in life during menopause, women can highly be affected.
If a woman is not properly diagnosed as a child, they can struggle with their academic performance, have behavioral problems, or even have trouble making friends. And this unfortunately won’t stop there. As the woman grows older, their difficulties will continue into adulthood and can be present in the workplace and their relationships.
The problems that they have to face on a daily basis to combat not being properly diagnosed with ADHD or autism, will inevitably cause them stress. They may feel confused about why they are different than other people; they may wonder why things don’t come as easy to them, and/or they could just feel completely misunderstood. These questions and feelings may lead them to face more mental health problems such as depression, anxiety, and/or eating disorders.
Now that this conversation started online, more women are aware that they are not alone in what they may be feeling or experiencing on a daily basis. Since autism and ADHD in women has become a trending topic on social media, the issues of awareness, underrepresentation, and misdiagnosis will likely cause a change in how we perceive neurodivergence.
Brianna Allison graduated from Duquesne University with a Bachelor’s degree in Multiplatform Journalism and one in Public Relations. Brianna has a strong passion for storytelling and loves being a part of a media-enriched environment. She has worked in broadcast journalism, social media, and print journalism in the past. In addition to role as Managing Editor of Today's Patient, Bri is a member of the broadcast team for The Power of the Patient Project and also is a member of our executive team as Director of Communications.
November 2022 page 2