Understanding ASD: Adult Women within the Autism Spectrum Disorder

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder characterized by difficulties in communication and social interaction, as well as the presence of repetitive and restricted behaviors and interests, having a lifelong impact on the individual. Ideally, it should be identified during childhood to address any potential difficulties during the early stages of development. However, those who are not diagnosed until adulthood may experience other related mental health issues, such as anxiety disorders, due to the challenges they face in social adaptation.

In Europe, it is estimated that around 1% of the population has an ASD diagnosis. In Spain, 0.9% of people are diagnosed, a percentage similar to other European countries, which hover around 1 to 1.2%. It is estimated that for every four men diagnosed with autism, one woman receives a correct diagnosis, encompassing the entire spectrum of this disorder. However, it is concluded that the figures for women are not entirely accurate, and we do not have the real value in the Spanish population.

A study by Bonney et al. mentions that if autism is diagnosed in childhood in both boys and girls, girls would receive a diagnosis at least one year later than boys, as 80% of girls remain undiagnosed until the age of 18 (McCrossin, 2022). This may be due to girls and women on the spectrum masking or camouflaging their difficulties to the extent that even their close circles are unable to identify them and thus seek help.

According to 2018 data on the Spanish population, it is estimated that there are currently between 140,000 and 264,000 autistic girls and women in Spain, a significant minority too large to be ignored.

The characteristics found in girls with ASD include:

On the other hand, the diagnosis of autism in adult women can be made, and the signs differ from those in girls.

Women with ASD often receive incorrect diagnoses or no diagnosis of ASD despite seeking mental health services more frequently than men (Gesi, C., 2021). The diagnosis of a mental disorder may be the first and only one received by women with autism who use camouflage strategies, as diagnostic tools are based on the male profile and how ASD is described therein.

When time passes without an ASD diagnosis, we find a group of women who end up with psychiatric diagnoses and treatments that do not address the main symptoms of their problem but rather the manifestations of a prolonged imbalance. A study conducted in 2017 by the Women’s Board of the Association of Autism Professionals (AETAPI) indicated that 40% of the women surveyed had previous diagnoses of depression, more than 30% had anxiety, and approximately 20% had social phobia. They possibly manifested these symptoms, but they undoubtedly stemmed from their life difficulties and social rejection.

In many cases, not only do women with autism present the symptoms of this broad disorder, but it is often accompanied by symptoms of another disorder that may have developed until the diagnosis is obtained.

Diagnosing Autism Spectrum Disorder (ASD) in adult women can be a complex process due to gender differences in symptom presentation and the tendency of women to use camouflage strategies. To achieve this diagnosis, mental health professionals conduct a thorough evaluation to provide answers to the uncertainty and explanation that our adult patients need. To do this, we use the following tools:

The first step in diagnosis is conducting a thorough clinical interview covering personal and family history, childhood development, educational and work experiences, as well as interpersonal relationships. It is essential that the mental health professional is trained to ask specific questions that can reveal behaviors and experiences typical of ASD in women.

A detailed evaluation of current symptoms is crucial. This includes observing communication and social interaction, as well as identifying patterns of repetitive and restricted behavior. Women with ASD may present symptoms more subtly, such as having intense interests that are socially acceptable or using coping mechanisms that mask their difficulties.

Standard diagnostic tools, such as ADOS-2 (Autism Diagnostic Observation Schedule) and ADI-R (Autism Diagnostic Interview-Revised), should be used alongside questionnaires and scales that have proven useful in detecting ASD in women. It is important that these tools are applied by professionals who understand gender differences in the manifestation of autism.

Adult women with ASD often present comorbidities such as anxiety, depression, eating disorders, and obsessive-compulsive disorders. A comprehensive evaluation should include an analysis of these conditions, as they can influence the presentation of ASD and the interpretation of symptoms.

To obtain an accurate picture of the woman’s functioning, it is useful to observe her behavior in different contexts, such as at home, at work, or in social situations. This can help identify behavioral patterns that are not always evident in a clinical setting.

Testimonies from family, friends, and coworkers can provide valuable information about the woman’s behaviors and social skills at different stages of her life. These reports can complement the clinical evaluation and provide a broader perspective on her challenges and strengths.

It is important to consider the woman’s own perception of her experiences and challenges. Self-reports can reveal how she feels about her social interactions, her interests, and her ability to manage daily life. This subjective component is crucial to understanding how she perceives and handles her condition.

Mental health professionals must receive ongoing training on gender differences in ASD and stay updated with the latest research and diagnostic practices. Sensitivity to the ways women may mask their symptoms is essential to avoid incorrect or late diagnoses.

In conclusion, diagnosing ASD in adult women requires a multifaceted and gender-sensitive approach. By combining detailed clinical interviews, symptom evaluations, specific diagnostic tools, and considerations of comorbidities, as well as evaluating observations in various contexts and third-party testimonies, professionals can offer more accurate diagnoses and ultimately provide more effective support.

After the diagnosis, although it can initially be a shock, this relief is usually limited to the woman or girl’s immediate environment. For most adult women, discovering that the difference they have felt since childhood is not imaginary or a severe personal deficit, and that previous mental disorders treated over the years are actually manifestations of another problem, generally brings a great sense of relief.

But after this feeling of relief, girls and women may be subjected to what can be called the «ghosting effect»: «How can you be autistic if you are smart…», «If you have children…», «If you work…», or «If it doesn’t seem like you have autism…».

This effect continues with masking, fear of being different, and plunges women who thought the diagnosis would alleviate their burden into confusion and loss of self-esteem. It is already very challenging for adult women to get an accurate diagnosis, and if we add the normative society’s doubts about whether they belong to the spectrum or their special needs, which for them are basic needs to lead a functional life with the necessary supports.

Adult women with ASD can significantly benefit from a comprehensive and personalized support approach that addresses their unique needs. By providing accurate diagnoses, psychological support, social skills development, workplace accommodations, and community support networks, we can help these women lead fuller and more satisfying lives.

In conclusion, as a mental health professional, it saddens me that women face so many difficulties in accessing an answer to the feeling they have often carried since early stages of their lives. I also believe that it is the responsibility of professionals to continue updating ourselves on these issues to provide the best quality care to our patients and to be aware that in today’s society, there are many prejudices that cause many women on the spectrum to camouflage themselves and not obtain the help they need until adulthood, leading to other problems beyond Autism Spectrum Disorder. I faithfully hope that we will continue to advance in this area, and autism specialists will continue to provide the essential, basic supports for all individuals on the spectrum, enabling them to achieve the highest possible quality of life despite their difficulties.

– Mujeres y autismo. La identidad Camuflada. 2022
– Mujeres autistas: Dentro del espectro. Ed. CEPAMA. 2020
– Hervás, Amaia. (2022). Género femenino y autismo: infra detección y mis diagnósticos. Medicina (Buenos Aires), 82(Supl. 1), 37-42. Recuperado en 25 de junio de 2024, de http://www.scielo.org.ar/scielo.php?script=sci_arttext&pid=S0025-76802022000200037&lng=es&tlng=es.

Written by Lidia Fernández.