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6 Sep

2024

Autism and women's health

Although we are beginning to better understand the experiences of autistic women in healthcare settings, there is still much to be learnt to improve health outcomes.

In general, autistic adults experience poorer health than their neurotypical peers. Common physical and mental health conditions that can co-occur with autism include epilepsy, eating disorders and food sensitivities, sleep disorders, gastrointestinal disorders such as constipation and gastrointestinal reflux (heartburn), anxiety, depression and obsessive-compulsive disorder (OCD) and hyperflexible joints (that can lead to injuries and pain).

Research also points to inherent gender biases in the delivery of healthcare. A survey of 3000 Australian women for the 2024 National Women’s Health Summit found that 2 out of 3 women had experienced healthcare-related bias and discrimination, such as having their pain or symptoms dismissed or disbelieved. When this bias is combined with a lack of autism awareness, it can often lead to inadequate care or otherwise poor experiences for autistic women.

A 2021 study looked at the healthcare records of over 2000 autistic people and compared these to those of a comparable group of neurotypical people. The researchers found that for some health conditions, autistic women experienced ‘double jeopardy’ — that is, they had even worse health outcomes that would have been predicted from them being both autistic and a woman. This was true of nutritional disorders (covering anything from obesity to vitamin deficiencies from restricted eating), diseases of the nervous system, mental health conditions, and sleep disorders.

What are some of the factors that could be contributing to health inequity for autistic women?

Communication challenges

As we know, communication is a two-way street. When autistic people are interacting with neurotypical healthcare workers it’s not surprising that wires get crossed. Problems that may arise include doctors talking too fast and not checking you’ve taken in the information, using idioms and sarcasm, and misinterpreting body language, such as interpreting avoidance of eye contact as a sign of disinterest.

Some autistic people may also have alexithymia, a condition where a person has difficulty experiencing, identifying, and expressing emotions. If you’re unable to label your emotions, it will require a particularly sensitive health professional to pick up the cues.

Sensory challenges

Altered sensory perception can make it difficult for some autistic individuals to locate the described pain or discomfort. If a woman is unable to describe or accurately pinpoint gynaecological pain, for example, it may not be properly investigated.

Societal challenges

Unfortunately, not all healthcare workers and the organisations they work for are going to be sensitive to your needs. This is particularly true of the public health system, where staff and services are often overstretched. Here are some important health considerations during the life stages of an autistic woman.

Sexual and reproductive health

Whether you’re sexually active or not, it’s important to look after your sexual health.

Autistic women are more vulnerable to sexual abuse and exploitation than the general population. Difficulties in social communication and a lack of accessible support options for autistic women can contribute to this alarming statistic. Even when you’re in a relationship, it’s important to understand your rights when it comes to consent.

If you are in an unsafe relationship and need help, contact 1800RESPECT. In an emergency, contact 000.

If you have a male partner and have given consent, you will need to consider contraception to prevent unwanted pregnancies. Insisting on condoms with a new sexual partner also helps guard you against contracting a sexually transmitted disease.

Some contraceptive methods can also help manage menstrual difficulties such as painful periods or heavy bleeding. Options include the oral contraceptive pill, long-term injections or implants, or progestin-releasing IUDs. A good GP will explain the different contraceptive methods to their patient and help them to make an informed decision based on their needs and circumstances.

Gynaecological (pelvic) examinations can be challenging in terms of sensory sensitivities, but it helps to be familiar with the doctor examining you. Most women prefer to be examined by another woman, and fortunately, there are more and more women GPs these days. To reduce anxiety, ask if they can talk you through the procedure before and as they perform it. You can also take a friend along as a support person if you like.

When it comes to cervical screening for the prevention of cervical cancer, a test is now available that you can perform yourself at home, removing the need to visit the doctor to have the test.

Pregnancy and childbirth

Autistic women can face unique challenges during pregnancy and childbirth that can make the process more complicated and distressing. There are several ways these challenges can be addressed depending on your needs, wishes and circumstances.

Having an understanding of your own strengths and support needs as an autistic person is an important first step in navigating pregnancy and childbirth. If you experience sensory sensitivities, informing your healthcare providers can help them to support you. For example, healthcare workers may be able to dim the lights or reduce the noise levels in the area you are giving birth to prevent sensory overload. Keeping comfort items on hand during pregnancy and childbirth can also help you navigate sensory sensitivities and self-regulate.

Social communication differences can also cause challenges for autistic women who are pregnant. These differences can make communicating with healthcare providers challenging, which can then lead to inadequate care. Finding healthcare workers who have an understanding of autism or are willing to learn can make this process much easier. Creating a profile of your support needs, recording information to revisit later and bringing a support person to appointments can all be helpful.

Many autistic people experience pain differently from neurotypical people. Differences in interoception (the ability to identify internal states) can affect pain tolerance and the ability of people with autism to express that they are in pain. Developing a comprehensive pain management plan with your healthcare providers is vital and should involve a variety of pain management options.

Breastfeeding can be challenging for both autistic and neurotypical women. Not all women choose to or can breastfeed, and for those who do want to breastfeed, there can be obstacles along the way. Creating a quiet and calm space to breastfeed is essential, as this prevents sensory overload and emotional dysregulation. You might like to watch TV, listen to music or read in this space to help you self-regulate.

If the physical touch involved with breastfeeding makes you uncomfortable, consider using a nipple shield. And remember, if breastfeeding is a stressful experience for you, it is perfectly fine to explore other options, such as expressing or formula feeding. The health, safety and happiness of you and your baby matters most.

Some women may discover that they are autistic after having children of their own, often if one or more of their children receives an autism diagnosis. If you want to learn more about autism in adults, you can visit ‘Autism: What Next?’

Mental health

It’s long been known that autistic women can experience poor mental health. Many women report a history of anxiety and depression, self-harm, substance abuse, or eating disorders that go back to adolescence, particularly if — as is common — their autism was not recognised at the time.

Many of these problems may be the result of trying (and sometimes failing) to fit in, with social camouflaging (or masking) linked to physical burnout, low self-esteem, anxiety and ultimately, depression. Thus, the recognition and self-acceptance that can come with a late autism diagnosis may be therapeutic in itself.

If you continue to be troubled by poor mental health, it is important to seek professional help. Medicines such as antidepressants can often provide relief, but professionals can also work with you to make changes to your life that help you sleep better and reduce anxiety and stress.

Your GP can also refer you to a psychologist for up to 10 Medicare-subsidised psychologist visits a year. Psychological treatments such as cognitive behaviour therapy (CBT) have now been adapted to accommodate the unique thinking styles of autistic people. The Australian Psychological Society has a Find a Psychologist search facility which allows you to search for psychologists with particular expertise in autism.

Menopause and ageing

As you age, it's recommended you attend your GP for annual general health checkups and routine screening, checking blood pressure, cholesterol, and blood sugars.

Once you reach the age of fifty, screening mammograms for breast cancer are recommended every two years. There are BreastScreen organisations in every state and territory, and their staff are specially trained to support women with chronic health conditions and disabilities. It’s recommended that you make an appointment by telephone so you can discuss your needs in advance.

Especially after menopause, women need to look after their bone health by consuming enough calcium, weight-bearing exercise (such as jogging or aerobics) and getting enough vitamin D.

Menopause brings with it the end of periods, which for some women can be an immense relief. However, the limited research there is on the topic indicates that autistic women may experience an increase in psychological distress during this period, with an uptick in social difficulties and sensory sensitivities, poorer concentration, and anxiety and depression. If you’re able to take hormone replacement therapy, this can alleviate some symptoms, so if you are feeling distressed, speak to your GP to discuss your treatment options.

Making healthcare visits less stressful

Unfortunately, many autistic people have had bad experiences in their past, making them anxious about attending medical appointments. While things are improving (for example, GPs are now learning about neurodiversity as part of their postgraduate education), there is still a long way to go. Here is a list of accommodations you can ask for to make healthcare visits less stressful.

Longer appointments, so you have more time to ask questions and take in new information.
Being allowed to wait in your car until your appointment is called, rather than in a noisy waiting room.
Scheduling telehealth appointments where possible, so you don’t even need to leave your home to see the doctor.
Asking for written information to supplement anything you’ve been told verbally so you don’t miss anything.
Taking along a support person as a backup.

The Autism CRC has produced some documents for health professionals, such as ‘Understanding autism and what you need to know’. You may want to give a copy to your healthcare provider so they can understand your needs better.

For more information about autism and women’s health, you can visit the following links:

Written by Benison O'Reilly, co-author of The Australian Autism Handbook. You can learn more by visiting the book's Instagram at @australianautismhandbook.