**Autistic Women* and Health Communication**

Autistic individuals generally experience more health issues than non-autistic individuals (Weir, Allison & Baron-Cohen, 2022). Autistic women face a range of health concerns that can be both physical and mental. Some of the common health concerns faced by autistic women are:

Mental Health: Autistic women are at a higher risk for developing mental health conditions like depression, anxiety, and obsessive-compulsive disorder (OCD). They may also experience higher levels of stress, which can negatively impact their mental health.

Sensory Processing Issues: Many autistic women experience sensory processing issues, which can include hypersensitivity to light, sound, touch, or smell. This can lead to discomfort, pain, and stress.

Digestive Issues: Autistic women are more likely to experience digestive issues like irritable bowel syndrome (IBS), constipation, and acid reflux. These issues may be related to food sensitivities or intolerances.

Sleep Problems: Autistic women may struggle with sleep, including difficulty falling asleep or staying asleep. This can lead to fatigue and other health issues.

Hormonal Issues: Autistic women may experience hormonal imbalances, including irregular menstrual cycles, polycystic ovary syndrome (PCOS), and thyroid problems.

Eating Disorders: Autistic women are at a higher risk for developing eating disorders like anorexia, bulimia, or binge-eating disorder.

Chronic Pain: Some autistic women experience chronic pain, including joint pain, headaches, and muscle pain.

Autoimmune Disorders: Autoimmune disorders such as Coeliac disease and Lupus are more common in autistic women.

Migraines

It is important for autistic women to receive appropriate medical care and support to address these health concerns. A healthcare provider who is knowledgeable about autism can help autistic women manage these issues and improve their overall quality of life. Autistic women with fluent speech are likely to represent themselves to healthcare providers, but for a variety of reasons may struggle to represent their issues within their healthcare settings. We have certainly found that many women in our clinical practice report that they struggle to attain the services they need, and for their needs to be understood and accommodated by their healthcare professionals.

Why do fluently speaking autistic women struggle with communication with healthcare providers?

Some of the difficulties autistic women can face when discussing their health issues with healthcare providers include:

a different perception of pain and discomfort, usually a higher, but sometimes a lower pain threshold, leading to under-reporting of symptoms or facing not being believed due to the amount of pain/distress described.
slower processing of social and emotional information.
difficulties expressing emotions verbally, including having alexithymia (difficulty both detecting and describing emotions using speech).
emotional challenges leading to ‘shut down’ and situational mutism
co-occurring social anxiety.
semantic or auditory processing difficulties, especially if there is background noise and conversations.
non-verbal skill difficulties, including processing of facial expressions, speech and gestures.
misinterpretation of questions, due to literal thinking, anxiety, or theory of mind (perspective-taking) difficulties.
sensory experiences often present in healthcare environments, including electronic noises from medical equipment, bright lights, certain odours, and physical contact.

Many autistic women experience an interaction of these social, emotional, communication, and sensory challenges.

Research findings on health communication for autistic women

One of us (MG) had the privilege to be involved in a research study investigating the challenges that may be involved for autistic women as they sought healthcare (Lum, Garnett & O’Connor, 2014). The study was led by Michelle Lum who recruited 58 adult female participants, approximately half of whom were autistic. An exploratory questionnaire was developed by using qualitative feedback from autistic women in addition to a literature review. The two groups were compared to determine whether autistic women experience greater healthcare challenges than non-autistic women in both general and maternity healthcare.

The results indicated that there were definite healthcare challenges for autistic women compared to non-autistic women. Autistic women experienced more healthcare anxiety, greater difficulties with communication whilst under emotional distress, anxiety related to the presence of other patients in the waiting room, more challenges accessing support during pregnancy, and more difficulty communicating their pain and needs during childbirth.

Perhaps not surprisingly, only 75% of the autistic women disclosed that they were autistic to their health professional due to concerns about stigma. This is concerning because voluntary disclosure may enable specific accommodations to reduce the challenges that women experience and to flag the physiological conditions that are associated with autism, as described above.

All the women in the study had encountered healthcare professionals with limited or inaccurate knowledge of autism and found this extremely frustrating. Sixty percent of women said that they would find healthcare information relating specifically to their needs as an autistic woman as being frequently or always useful, compared to 25% who said this would sometimes be useful and 6% who said “never/infrequently.”

Accommodations that may reduce the healthcare communication challenges that autistic women experience

One of the major accommodations to assist autistic women in healthcare settings is increasing the healthcare provider’s awareness of autism allowing them then to accommodate their individual patient needs and reduce healthcare anxiety. Whilst this accommodation is out of the control of many autistic women, it remains a strong need in the healthcare community and, with the latest figures showing the high prevalence of autism, being one and 36 children (Maenner et al, 2023), awareness of autism in our community is necessarily growing.

Autistic women can search to find a GP in their area who understands autism and can educate their GP on their own specific needs, as they understand them, and they can request that their GP help them to discover more needs over time. We have found that giving people the information they may need to know at a particular time can be helpful, either as a spoken or written Social Story ™ (https://carolgraysocialstories.com/). For example, if describing emotions is difficult, saying, “I am the sort of person who struggles to put my feelings into words, but I have a Feelings Wheel we could use which may help me” may be helpful. The Feelings Wheel (hyperlink to https://feelingswheel.com/) can be downloaded and taken along to consultations. Or if processing time is an issue, the person may say, “I am the sort of person who needs time to process oral communication. Please allow me more time to process what you are saying before I answer.”

Healthcare practitioners can accommodate autism within the workplace by asking if there are any social, emotional or sensory issues they need to be aware of. Some of these may include attending to sensory overload, for example overcrowded waiting rooms, strong smells of perfume and cleaning products, allowing more processing time within interviews and enhancing communication by the use of resources, for example, visual pain scales. They can support their autistic patients to use strategies that would assist their management of sensory and emotional challenges, for example, the use of noise cancelling headphones or earplugs in the waiting room, and provision of written information at interview, rather than relying on verbal discourse.

*NB: Please note that wherever gender is referred to in this article we are referring to the gender assigned at birth.

References

Lum, M., Garnett, M., & O’Connor, E. (2014). Health communication: A pilot study comparing perceptions of women with and without high functioning autism spectrum disorder, Research in Autism Spectrum Disorders, Volume 8, Issue 12, Pages 1713-1721, ISSN 1750-9467, https://doi.org/10.1016/j.rasd.2014.09.009.

Maenner MJ, Warren Z, Williams AR, et al. (2023). Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ 2023;72(No. SS-2):1–14. DOI: http://dx.doi.org/10.15585/mmwr.ss7202a1.

Weir E, Allison C, Baron-Cohen S. (2022). Autistic adults have poorer quality healthcare and worse health based on self-report data. Mol Autism. 2022 May 26;13(1):23. doi: 10.1186/s13229-022-00501-w. PMID: 35619147; PMCID: PMC9135388.

Latest research on camouflaging

Children who have autism will know at quite a young age that they are different to their peers with regard to the ability to read facial expressions, body language and social cues, and are different to their peers in the ability to make and keep friends. How does the child with autism cope with this knowledge?

One way of coping is to avidly observe other children and adults and to analyze their social behavior, looking for patterns or social ‘systems’ and copying or imitating what you see and hear. This coping mechanism of acquiring social skills by observation and imitation is an intellectual rather than intuitive activity. The child or adolescent subsequently creates a social ‘mask’ and artificial persona, gradually acquiring social scripts in terms of dialogue, facial expressions, and gestures that they have observed, analyzed, and imitated. This coping mechanism is known by clinicians and academics as camouflaging and was first recognized as a consistent theme in the autobiographies of women who have autism, such as in Liane Holiday Willey’s seminal autobiography Pretending to be Normal. (Holliday Willey 1999). Clinicians specializing in autism also became more aware of camouflaging when observing girls and women in social situations at school and work and during a diagnostic assessment or therapy session. Recent research has confirmed that camouflaging is not an exclusively female phenomenon and occurs with males who have autism (Cage and Troxell-Whitman 2019; Hull et al 2020; Lai et al. 2017). We now know that 70% of adults who have autism consistently use camouflaging in social situations (Cage and Troxell-Whitman 2019).

The motivations for camouflaging are varied and include a means of protection from ostracism, humiliation, and bullying and facilitating being accepted and included by peers at school and colleagues at work. Camouflaging can also contribute to gaining and maintaining friendships and relationships. A husband who has autism explained one of his reasons for camouflaging was that “…it makes my wife less embarrassed to be seen with me” (Cage and Troxell-Whitman 2019). Camouflaging becomes a social survival mechanism, being an obligation rather than a choice (Mandy 2019).

We now have a questionnaire to explore whether a person engages in camouflaging in social situations and the degree of camouflaging (Hull et al. 2019). The Camouflaging Autistic Traits Questionnaire (CAT-Q) was developed from discussing aspects of camouflaging with adults who have autism describing their social experiences and abilities. A recent study using the CAT-Q found that females who have autism had higher total camouflaging scores on the questionnaire than males who have autism. While camouflaging is not an exclusively female phenomenon, in general females are better at camouflaging and more likely to use camouflaging in a wider range of social situations (Hull et al 2020).

Camouflaging can also delay the diagnosis of autism, eliciting comments such as, ‘You’re too social to have autism’. This will delay and inhibit self-understanding and self-acceptance (Bargiela, Steward and Mandy 2016). A delay in confirming the diagnosis will also delay access to appropriate support networks and services, and understanding by family and friends.

We recognise that social acceptance and success through camouflaging will have been achieved at some psychological cost. There can be performance anxiety in social situations, as though the person is continually ‘on stage’ and at the end of the day, ruminating on their social ‘performance’ and the perceived judgement of friends and colleagues. As social inclusion is achieved intellectually rather than intuitively, camouflaging is mentally exhausting. Like Cinderella at the ball, the person can maintain the social pretence for a while, but then becomes totally drained of mental energy and must return home to recover in solitude. The unrelenting mental exhaustion of camouflaging can lead to prolonged stress, anxiety, and depression, and may be one of the reasons for self-harm and suicidal ideation. Thus, camouflaging can contribute to the development of a deep and prolonged depression.

The psychological consequences of camouflaging can also include a lack of knowledge and expression of the inner and true self, with many adults who are successful at camouflaging saying, ‘I don’t know who I am’, and ‘I never reveal the real me’. This creates a lack of self-identity, low self-esteem, and prolonged self-analysis. The person recognizes that friendships and relationships are based on deceit, with the presentation of a ‘false’ identity leading to feelings of deep inner loneliness. The person yearns to find, and be able to be, an authentic self, but is aware that when the true self is revealed, they may be rejected and despised.

In psychotherapy we recognise that there are times when camouflaging or ‘acting’ is necessary, as in the phrase ‘when in Rome, do as Romans do’. However, we also encourage the person to restrict the duration of camouflaging during their day to a level that is not detrimental to mental health. In other words, be true to the real self and to learn ways of explaining social difficulties and seeking sympathy and support rather than playing the exhausting and false role of a neurotypical.

References

Bargiela, Steward and Mandy (2016) Journal of Autism and Developmental Disorders 46, 3281-3294

Cage and Troxell-Whitman (2019) Jr. Autism and Developmental Disorders 49 1899-1911

Holliday Willey (1999) Pretending to be Normal: Living with Asperger’s syndrome. Jessica Kingsley Publishers

Hull et al (2019) Jr. Autism and Developmental Disorders 49 819-833

Hull et al (2020) Autism 24, 352-363

Lai et al. (2017) Autism 21, 690-702.

Mandy (2019) Autism 23 1879-1881

Dr Tony Attwood

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Autistic Women* and Health Communication