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Undiagnosed: Women on the Spectrum

The call for a more gender-sensitive understanding of autism.

During Thanksgiving dinner, Beth's aunt asked her how she was enjoying college. This seemingly innocent question triggered Beth's discomfort and prompted her to abruptly exit the room. Beth is frequently misunderstood by her family, who have labeled her as "difficult," "angry," and “aloof." Her relatives have gossiped that Beth’s parents should have taught her to be more socially appropriate. No one, including Beth’s parents, ever asked the question: “Might Beth be on the spectrum?” Why? Well, she never looked like her cis-gender male cousin who, at 6 years old, was throwing temper tantrums, getting in trouble at school, and knew the number of floors in every major skyscraper in the world.

Diagnostic Criteria for Autism: Gender Specificity

The diagnostic criteria for Autism Spectrum Disorder (ASD) were initially based largely on male presentations. Women like Beth may have non-male-specific manifestations of ASD. For instance, women may demonstrate fewer stereotypical behaviors and have strengths in social motivation, executive function, and intelligence. These variations complicate timely diagnosis, leaving individuals without essential support and interventions vital to their well-being.

In response to this disparity, the Autism Center of Excellence (ACE) Network is actively working on a gender-sensitive tool for ASD assessment, aiming to bridge the diagnostic gap and ensure timely and appropriate support.

Autism Spectrum Disorder (ASD) can present differently in men and women, though it’s crucial to recognize that these are general trends and may not apply to every individual.

1. Social Differences

  • Men: Often display more noticeable social difficulties, such as challenges in forming friendships, understanding social cues, and engaging in reciprocal social interactions.
  • Women: May develop coping mechanisms that allow them to camouflage or mask their social difficulties. They might mimic social behaviors, which can make it less apparent that they are experiencing challenges in social situations.

2. Communication Differences

  • Men: May exhibit more pronounced language and communication difficulties. For example, they may have delayed language development or struggle with maintaining conversations.
  • Women: Can be more verbally fluent and may develop compensatory strategies, such as memorizing social scripts, to navigate social interactions. This might make their communication difficulties less noticeable.

3. Interests and Activities

  • Men: Often show intense and narrow interests, focusing on specific topics or activities to the exclusion of others.
  • Women: May have more varied interests and may be able to blend in more easily with neurotypical peers by adopting interests that are more socially acceptable.

4. Sensory Sensitivities

  • Men and Women: Both genders may experience sensory sensitivities, such as hypersensitivity or hyposensitivity to sensory stimuli like lights, sounds, or textures.

5. Diagnosis and Recognition

  • Men: Tend to be diagnosed with ASD more frequently, possibly because their symptoms are often more overt and align with traditional diagnostic criteria.
  • Women: May be underdiagnosed or diagnosed later in life due to differences in the manifestation of symptoms and a greater ability to mask difficulties.

The Impact of Undiagnosed ASD: A Link to Depression

The silent epidemic of undiagnosed women with ASD exposes them to a heightened risk of depression. Without a timely diagnosis, individuals like Beth may struggle to understand and navigate the challenges they face, leading to persistent feelings of isolation, anxiety, and frustration. The absence of appropriate interventions and support further exacerbates these struggles, compounding the emotional toll on undiagnosed individuals.

Psychologists have a responsibility beyond awareness: to challenge stereotypes and advocate for gender-sensitive diagnostic tools. Understanding the intricacies of ASD in women contributes to a more inclusive environment, paving the way for a brighter future for those navigating the intricate landscape of neurodiversity.

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