Adult Female Diagnoses of Autism Are Increasing: Insights from Specialists on the Reasons Behind This Trend
Autism and Women: A Shift in Understanding and Diagnosis
The discussion around autism has gone mainstream, with a significant rise in diagnoses, particularly among women. Today, it's estimated that 1 in 36 children are diagnosed with autism spectrum disorder (ASD), and the rate of diagnosis has skyrocketed by 175% since 2011. This trend is especially noticeable among females[1]. So, what's behind this shift and what's everyone should know about the often misunderstood condition that more and more people are seeking a diagnosis for?
Let's take a closer look.
First, some basics about autism
The Diagnostic and Statistical Manual of Mental Disorders (DSM) is the go-to guidebook for mental health conditions, and it has defined autism differently over the years. ASD, as we know it today, was first recognized in the DSM-5 in 2013. It acknowledges the fact that autism can manifest in a wide range of severities and presentations[2].
The core diagnostic features of autism are differences in social interaction and communication. Differences in these areas should have been present since a person's early years[2]. The American Academy of Pediatrics (AAP) advises that children undergo ASD screenings during their 18- and 24-month well-child visits[2].
The causes of autism remain unknown, but genetic factors are thought to play a significant role. Research suggests that there is a higher chance of identical twins having ASD compared to fraternal twins[2]. Additionally, there's evidence that a genetic predisposition combined with exposure to harmful contaminants during pregnancy might contribute to the development of ASD[2].
When it comes to the debate surrounding a possible link between vaccines and autism, most research has found that there is no scientific basis for such a connection[2].
The mystery of rising diagnoses among women
It's important to note that the increased diagnosed rate of autism in women doesn't necessarily mean that the number of people being born with ASD has increased. Rather, it is likely that more individuals with ASD, including grown adults, are being detected.
"I don't think there's an epidemic [of women being diagnosed with autism]", explains Dr. Catherine Lord, a professor of psychiatry at the David Geffen School of Medicine at UCLA and codeveloper of the Autism Diagnostic Observation Schedule (ADOS)[1]. Instead, Dr. Lord suggests that we are getting better at identifying people, and that individuals are now seeking this diagnosis, which they might not have done 50 years ago.
The reason that women have often been overlooked is twofold:
- Previous diagnosing tools were biased towards analyzing behaviors typically more common in boys[1][3].
- Women have a tendency to "mask" their symptoms, learning to blend in socially, making their ASD harder to detect[3].
Historically, research on autism has primarily focused on males, and boys are more commonly affected by neurodevelopmental disorders[1][3]. Even today, the understanding of autism in females has been limited, making it challenging to recognize the condition in this group.
Further complicating matters, research indicates that females with autism are more likely to have co-occurring illnesses like anxiety and depression, potentially leading to a diagnosis for these issues rather than ASD[1].
The impact of an undiagnosed autism diagnosis in adulthood
For women who have gone undiagnosed for their entire lives, the experience can be fraught with confusion and difficulty. Many adult women with autism struggle with feelings of isolation and misunderstanding[1].
Common challenges include:
- Relying on routine and sameness for safety and feeling irrational irritability when plans change[3].
- Struggling with social interactions and the maintenance of friendships[3].
- Coping with sensory sensitivities, often missed or misunderstood until a diagnosis[3].
- Experiencing higher rates of anxiety, depression, and even suicide as a result of these challenges and delayed diagnoses[1].
The journey to an adult autism diagnosis
Diagnosing ASD in adults can be tricky since there's no medical standardization like a blood test for the condition[1]. The updated version of the ADOS, which is often considered the gold standard tool for autism diagnosis, was adapted for usage in adults but wasn't intended for an adult seeking a first-time diagnosis[1].
When seeking a diagnosis, it's vital to consult a psychiatrist, psychologist, or neuropsychologist specializing in ASD. Your primary care provider can connect you to one of these specialists[1]. Additionally, visiting an autism research center for a diagnosis could give you access to professionals who are particularly skilled in dealing with the complexities of autism in women[1].
Acquiring an autism diagnosis can provide much-needed context for an individual's behavior, helping them understand themselves better, prioritize their needs, and access necessary support services[1]. In the words of Dr. Megan Anna Neff, a psychologist and founder of Neurodivergent Insights, "For me, getting a diagnosis of autism was what finally unlocked the key to compassion."
References:1. Half of kids who were diagnosed with autism in a community setting didn't meet autism diagnosis criteria, study shows2. A growing area of research focuses on the interaction of genetic and environmental factors3. 5 Subtle but Common Signs of Autism in Adults4. Sia Feels 'Fully' Herself After Learning She's on the Autism Spectrum5. 5 Possible Signs of ADHD in Adults
Related:* Sia Feels 'Fully' Herself After Learning She's on the Autism Spectrum* 5 Subtle but Common Signs of Autism in Adults* 5 Possible Signs of ADHD in Adults
- The increased diagnosis rate of autism among women is not indicative of an increase in the number of individuals born with autism, but rather a result of improved diagnostic methods and more individuals seeking a diagnosis.
- The manifestation of autism in women has historically been understudied due to diagnostic tools being biased towards behaviors commonly observed in boys and females' tendency to "mask" their symptoms, making it harder to detect ASD in this group.
- Adult women diagnosed with autism may face challenges such as relying on routine, struggling with social interactions, managing sensory sensitivities, and experiencing higher rates of anxiety, depression, and even suicide as a result of delayed diagnoses and the associated challenges.
- Seeking a diagnosis for autism in adulthood can be complex due to the lack of a medical standardization for the condition, and it's essential to consult a specialist in autism spectrum disorder for an accurate diagnosis. A diagnosis can provide valuable context, helping individuals understand themselves better and access essential support services.
