Many people in this country face inequities which impact health during pregnancy. One example is the Black maternal health crisis. Black mothers are twice as likely to die or experience complications during pregnancy and delivery than white mothers in the U.S. This is due to many structural barriers (like redlining, Jim Crow laws, and slavery) and social barriers (access to care, environment, income) faced by minoritized people. People with disabilities often face the same kinds of barriers to health.

Access to reproductive health and planning information, sexual education, and pregnancy- related education is notably lower among  autistic people compared to non-autistic people. Autistic people are less likely to report receiving explanations about the process of birth.

Many factors may contribute to these differences in knowledge and awareness, including misconceptions about sexuality and infantilization. A common misconception about people with disabilities is that they are not sexually active or have no sexual desire.

Infantilization is the treatment of adults with disabilities as if they were dependent children in need of protection.

All of these factors impact the care autistic people receive once they become pregnant People with intellectual and developmental disabilities (IDD) are less likely to receive timely prenatal health care and are more likely to report inadequate prenatal care compared  to people without IDD. Timely prenatal care allows for early screening and monitoring of health conditions and for the delivery of health education. Delays in accessing prenatal care may be associated with adverse maternal health and pregnancy outcomes.

Autistic women report that they do not feel fully supported by their healthcare

professionals, including OBGYNs. They feel that healthcare professionals did not communicate clearly during childbirth, and that these professionals did not have sufficient levels of knowledge about autism to provide quality  care and make appropriate adjustments. These challenging patient-professional relationships can cause autistic patients to feel unprepared and unheard by their doctors, and to feel a lack control over their own pregnancy and birthing experiences.

This lack of awareness and experience places additional pressure on the individual to educate the provider about their disability and related needs.

Many pregnancy-related health conditions are more common in autistic people than in non- autistic people, including pre-eclampsia and gestational diabetes. Deliveries are also often riskier in autistic people, including higher rates of pre-term birth, low birth weight babies, and cesarean section. Autistic people may be twice  as likely to die or experience complications  during pregnancy and childbirth compared to non-autistic people. Other conditions may be more common but are not well researched, including hyperemesis gravidarum (severe nausea and vomiting during pregnancy) and hypermobility (high levels of flexibility, or ability to move some or all of your joints more than other people can). These should be further explored. Improving pregnancy care and outcomes for autistic people likely involves improvements across many areas, including policy, research, and practice.

1 in every 6 people in the U.S. has a disability. Creating and championing policies that improve reproductive health and pregnancy care in all people, and particularly those with autism and/or other disabilities, is a key step to improving population health. Unfortunately, our team recently wrote a blog about policy moving in the opposite direction: the Dobbs decision had significant impact on the reproductive rights of those who are routinely marginalized, including people with disabilities. However, there have been some positive federal policy updates recently.

States now have an option to extend Medicaid postpartum coverage to twelve months after delivery under the American Rescue Plan Act of 2021. Medicaid already covers about half of all births in the U.S. and is an important source of insurance for many people.

Improving Supports After Childbirth

While the topic of this brief is pregnancy, we would like to acknowledge that people with disabilities who have children often fear custody loss and issues of parental rights.

Autism has been used as a basis for custody loss, and parents with IDD are much more likely to have a newborn discharged into state custody than people without IDD. Autistic people should be supported in their desire to be parents, formally (via services and supports) and informally (socially and culturally).

Improving Reproductive Health in Practice

There are clearly gaps in professional training and knowledge on serving autistic patients. There are also gaps in the ability of autistic patients to access health care professionals and the information they need to have an informed pregnancy. These unmet needs contribute to the poor experiences and outcomes of autistic people during pregnancy.