Many women with autism and ADHD are not diagnosed until adulthood. What do you do if you think you are one of them

Many women have to wait years to get a diagnosis. Credit: Roman Kosolapov/Shutterstock

Over the past decade or so, there has been a rise in the number of adults diagnosed with autism and ADHD. Any number of factors may explain this rise, including increased public awareness of both conditions, broader diagnostic criteria and changing perceptions in who influences autism and ADHD.

But while autism and ADHD still affect more men, more women are reporting being diagnosed with these conditions as adults. Again, this increase is probably due to a number of factors. But perhaps social media plays a role as well, as women can use platforms like Twitter and TikTok to spark discussions and share their experiences and stories.

One constant in the experiences many women shared on social media was how long they waited for a diagnosis. Many have even talked about how they have been ignored by healthcare professionals when looking for a diagnosis, telling Point Blanc that they are “not autistic” or that their problem is “anxiety and not ADHD.” For many, not knowing why they feel different from others has left them feeling confused and even depressed.

This is not surprising, because autism and ADHD are often overlooked or even misdiagnosed in women. Nearly 80% of women with autism are misdiagnosed — often with conditions such as borderline personality disorder, eating disorders, bipolar disorder, and anxiety. It is currently unknown how often women with ADHD are misdiagnosed.

But there are a number of reasons why this might happen. The first is that the symptoms of autism and ADHD are different in women than in men. Other conditions common in people with autism and ADHD (such as anxiety and depression) may show that symptoms are the result of these conditions instead. Women with autism and ADHD may also learn over time how to hide their symptoms from people — which can lead to further misdiagnosis or late diagnosis.

Another major problem is that autism and ADHD are still seen as “male disorders”. While it is true that both conditions affect a higher percentage of men than women, it also means that current tools used to diagnose people with these conditions tend not to easily identify female symptoms.

Girls with autism may have less noticeable social difficulties and often have better verbal communication than a boy with autism. For girls with ADHD, they are often not hyperactive and may not have the disruptive behavior that some boys may have. This means that many girls with these conditions may be ignored by their parents, teachers, and even doctors because the diagnostic criteria do not match their symptoms.

Correct diagnosis

When not properly diagnosed and treated in childhood, girls with autism or ADHD may have poor academic performance, behavioral problems, and difficulty making friends. As they get older, this can make it difficult for them to deal with the professional demands in the workplace. It may also lead to anxiety and stress because they feel misunderstood or confused about why certain experiences are so difficult, along with other mental health problems such as depression and eating disorders.

In one study of women who were not diagnosed with ADHD or autism until adulthood, many participants reported being “wrong” and not fitting anywhere. Others have even gone so far as to try to change their clothes or personality to fit them better. But after the diagnosis, participants felt they understood better why they felt the way they did and felt a greater sense of personal worth after receiving the diagnosis.

A diagnosis can sometimes have a negative impact – some women fear that they may be discriminated against, that others may think of them poorly or that people will view them with contempt. But in general, finally receiving the correct diagnosis makes most women feel empowered and have a better quality of life.

If you think you may have autism or ADHD but haven’t been diagnosed, there are many things you can do. Online resources, such as AADDUK, ADHD, and the National Autism Association, offer advice and suggestions on how to approach your doctor with questions, and what support or specialist clinics are in your area.

If you’re planning to see your GP, it may be helpful to take a loved one with you for support and help explaining why you think you have autism or ADHD. This may be as simple as telling them that you have read about the conditions and experienced similar symptoms.

Since not all GPs may have a deep knowledge of autism or ADHD, it is important to present your experiences as clearly as possible. Use real-life examples if you can and feel comfortable. If you don’t get a referral from your GP after your visit, ask for a second appointment or even ask to see another GP for your surgery. After the referral, you will be advised to visit a diagnostic service that will help you get the right support you need.

Increased awareness of the symptoms and behavior associated with autism and ADHD in girls and women will be important in changing how both are diagnosed—and hopefully, it will mean that more girls and young women get the help they need. And social media can be an important way to help people learn more about these conditions, and to connect people who have had similar experiences.

Autism remains underdiagnosed in girls and women, compounding the challenges they face

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