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: Autistic women experiences migraines more commonly than non-autistic women, which involve debilitating head pain, often in the front or sides of the head, nausea and extreme sensory sensitivity to sounds, light and smells.

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.” The original study was published in 2014, and we recognise that there has been some progress in health service understanding of autism over the last ten years but not to the degree that there are no longer any problems.

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 in 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 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.” A GP may write a ‘To whom it may concern’ open letter to hospital staff to describe medical aspects of autism they need to know. The autistic patient has several copies to be given to a range of hospital staff.

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.

Where to from here?

Our online courses Autistic Girls and Autistic Women aim to increase awareness of the more subtle ways autism can present in our community, particularly for girls and women. They were designed to increase participants’ understanding of autism for females and gender-diverse individuals and to provide strategies and ideas to help. Parents, carers, and health professionals will benefit.

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.

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