How the experience of pregnancy may differ for women with autism
By Stephanie Vandenberg
Pregnancy and autism may be understudied, but we know that some seasons of life may increase sensitivities or feelings of overwhelm for autistic women. Some of these periods include adolescence, menstruation, pregnancy, birth and menopause. This article specifically focuses on the experience of pregnancy for women with autism.
(A note about terminology: Obviously, people of all genders can go through pregnancy and birth! Because autistic women are a minority group, this article focuses on their experiences. These experiences may be similar in some ways to those of other autistic folks, but are often distinct.)
Conducting personal research
During pregnancy, autistic women often spend time researching and preparing for the birth of their baby. Individuals with autism often have great researching skills! So when it comes to pregnancy, some women on the autism spectrum spend copious amounts of time and energy researching, learning and planning.
It can be empowering for autistic women to feel knowledgeable and ready for what’s to come. However pregnancy, by its very nature, can be different for every person. Some women with autism may experience feelings of guilt or failure if they perceive themselves to be at fault for getting something “wrong”. It’s important for people to realize that every person can experience pregnancy in a different way.
For example, some women might develop gestational diabetes despite eating healthy foods and exercising regularly. It is really important to remember that we can plan ahead but sometimes the unexpected will happen anyway!
Controlling all factors
Autistic people can find it challenging to cope with uncertainty, and pregnancy can be an uncertain time. Women and couples are generally advised to develop a birth plan. So, how should we plan for something that is so unknown?
Having a birth plan doesn’t mean that everything will go to plan. However, by simply making the plan, you know that you’re are doing your best to prepare for what might happen. It can be helpful to remember that things might not go to plan, but that’s okay.
Access to information and late diagnosis
Often, girls and women may not receive their diagnosis of Autism Spectrum Disorder until later in life than their male counterparts. In some cases, women may go through childhood, adolescence and early adulthood without this diagnosis.
This is significant for women because the normal challenges of menstruating, pregnancy and childbirth can be exacerbated by our autistic traits.
Some women may be given their ASD diagnosis after having children. This may be one reason why there isn’t a plethora of information and research readily available specific to the experience of pregnancy in women with autism.
Heightened sensitivity to sensory stimuli
Throughout pregnancy, women often experience a heightened sensitivity to different smells and tastes. In the last trimester, women can feel an increased feeling of irritability and physical discomfort. Pregnant, autistic women may find they have elevated feelings of sensitivity to sensory stimuli in areas that generally concerned them before pregnancy. It is possible that this could eventually lead to feelings of overwhelm. So, it’s important that individuals try to manage these and ask for help when needed.
Comparison to others and feelings of guilt
Becoming a parent can be an exciting and joyous time. But during pregnancy, there are many stressful elements to deal with such as sleep deprivation or feeling unwell. There are many factors that might affect how enjoyable this process could be for an individual. For some women, pregnancy is a wonderful time. For others it can be tiring and overwhelming.
Women with autism may experience feelings of guilt if they have a hard time during pregnancy. It is said that comparison is the thief of joy. Every experience of pregnancy and early parenthood can be different. Some expectant mothers may need more support from others and it’s important not to compare your needs with those of someone else.
There may be communication challenges that a pregnant woman with autism encounter. When talking with health professionals, it is possible that a patient could feel they haven’t been heard or that their concerns are not being considered. In addition to this, a person with autism may find it difficult to communicate their needs in relation to pain and managing difficult aspects of pregnancy.
A tool that might be helpful for some women could be to use an Autism Health Passport or similar document. This is a document that you create outlining your needs, challenges and things that might be distressing to you. You can take this short document with you to medical appointments and at any point that you may be hospitalized, including when you give birth. It is a personalized document specific to your needs.
Here is a link to an example of a health passport developed by the National Autistic Society in the U.K.
Hearing pregnancy stories from women with autism
It can be incredibly valuable to hear people talk directly about their own experiences.
Here is a video created by Youtuber Purple Ella as she explains what her personal experiences have been specific to pregnancy as a woman with autism.
And here is another video by Youtuber Yo Samdy Sam about how she coped during pregnancy. It is interesting to hear how their stories vary in some ways and are similar in others.
Overall, there are so many strengths and abilities that women with autism possess. Along with these advantages and skills, there are challenges too. The experiences of pregnancy for neurodivergent and autistic women can vary. It’s important to have your support team and health professions ready to help you in ways that you need it most. It is okay to feel you need help or need greater support in ways that work for you during pregnancy.
About the Author: This post has been written by Stephanie Vandenberg, an Australian teacher and freelance writer. She enjoys writing on neurodiversity, education and travel. You can find her work here.