Research Summary

INSAR 2023 Research Summary: Obstetric Care and Pregnancy Experiences Among Autistic People

Dr. Fakhri Shafai
The International Society for Autism Research (INSAR) is the largest autism research organization in the world. This year's conference was held in Stockholm, Sweden on May 03-06. One focus this year was on pregnancy experiences in Autistic parents.

In this research summary, researchers from California looked at pregnancy experience and outcomes for a group of Autistic patients over 10 years. This study found greater rates of pregnancy complications and depression compared to the general population. Recommendations are made to help better support Autistic people during and after pregnancy.

Conference Summary: The International Society for Autism Research (INSAR) is the largest autism research conference in the world. This year’s conference took place May 03 – 06 and was held in Stockholm, Sweden.

There has been a push in recent years to elevate autistic voices and the “nothing about us without us” movement has led to additional events to provide a platform for autistic individuals to share their perspectives. This year also had multiple sessions devoted to exploring aging in autism and how to better support Autistic people as they enter their senior years. Topics for research panel sessions are chosen based on proposals around the world that are in line with the stated goals of the INSAR community.

INSAR 2023 Session: Obstetric Care and Pregnancy Experiences Among Autistic People

Presentation: Obstetric Care and Pregnancy Health Among Autistic Individuals in and Integrated Healthcare Setting in California

Presenting Author: J. Ames, Kaiser Permanente Division of Research, Autism Research Program

Additional Authors: M. Anders, Kaiser Permanente Northern California; E. Cronbach, The Permanente Medical Group; D. Gassner, Towson University, C. Lee, Kaiser Permanente Northern California, M. Giwa Onaiwu, Rice University; L. A. Croen, Kaiser Permanente Northern California

Background: There has been limited research done with Autistic people on their experiences during pregnancy and birth. Of the limited studies that have been done, there have been mixed results. One systemic review (meaning a planned way to compare studies about a specific topic) found that Autistic adults had challenges communicating with healthcare professionals during pregnancy and labour. Autistic people who were pregnant were also more likely to experience depression during and after pregnancy 1. There have also been relatively few studies about the sensory experiences of Autistic people during pregnancy, but one recent review found that sensory challenges were problematic for Autistic people while pregnant and that there was a lack of information and supports from their healthcare providers on ways to address these challenges 2. These studies have relatively few patients and more research is needed to see if these experiences are generalizable to a larger number of Autistic people who are pregnant.

INSAR presentation: How do Autistic people experience pregnancy and childbirth?

The presenting researchers explored anonymized medical records from a large healthcare delivery system in Northern California. The researchers looked at pregnancy outcomes that occurred for patients with a diagnosis of autism between January 2011 and July 2022. These records also included sociodemographic factors, health diagnoses during pregnancy, timing of first obstetric appointment, birth outcomes, and whether the patient had regular prenatal screenings. They also looked at whether a patient was diagnosed with clinical depression prior to, during, or following pregnancy.

In total, there were 121 Autistic individuals included in the analysis. Gestational complications included gestational hypertensions (23%), pre-eclampsia (10%), and gestational diabetes (10%). During pregnancy, 65% of patients were diagnosed with depression, with postpartum depression being diagnosed in 39% of patients. The researchers found that 16% of patients started prenatal care after the first trimester and 31% had delayed or missed screenings. The authors conclude that Autistic people who are pregnant need greater accessibility to prenatal care and support services, including mental health support.

How is depression screened for during pregnancy?

There are a variety of questionnaires that doctors may use to screen for depression during pregnancy. The one used by clinicians in the presented study was the Patient Health Questionnaire (PHQ-9). This short questionnaire asks a patient to rate how often they have been bothered by a problem in the past two weeks. Researchers also use this questionnaire as a benchmark to see if parents with psychiatric conditions end up having children who develop certain conditions later in life 3.

There are other questionnaires as well, so your doctor may ask you to fill out a different screening tool instead of/in addition to this one. If you are struggling with some other aspect of pregnancy that is not captured in the questionnaire, please be sure to mention it to your doctor. There are a variety of support programs available across Canada, so be sure to look for ones you may need if you would like more support during or after pregnancy.

To access this questionnaire and scoring guide, please go to the following links:

English Version of PHQ-9:

French Version of PHQ-9:

Scores are broken down into the following:

0 – 4 indicates none or minimal depression
5 – 9 indicates mild depression and patients may be in need of support
10 – 14 indicates moderate depression and patients may be in need of support
15 – 19 indicates moderately severe depression and patients may require antidepressants, psychotherapy, or a combination of treatment
20 – 27 indicates severe depression and patients may require antidepressents with or without psychotherapy

What can I do with this information?

As previously mentioned, this questionnaire can be helpful for starting a conversation with your doctor. You can ask for referrals to support services you may need, find out more about what is available, or discuss a birthing and postpartum plan to alleviate any anxiety you may have about what happens after you give birth.

You can find additional resources here:

- Your Guide to a Healthy Pregnancy

- Mayo Clinic Guide to a Healthy Pregnancy, 2nd Edition by M. J. Wick

- Women and girls with autism spectrum disorder: Understanding life experiences from early childhood to old age by Autistic author and self-advocate Sarah (available in the AIDE Canada library)


  1. McDonnell, C. G., & DeLucia, E. A. (2021). Pregnancy and Parenthood Among Autistic Adults: Implications for Advancing Maternal Health and Parental Well-Being. Autism in Adulthood, 3 (1), 100-115.
  2. Samuel, P., Yew, R. Y., Hooley, M., Hickey, M., & Stokes, M. A. (2022). Sensory challenges experienced by autistic women during pregnancy and childbirth: A systematic review. Archives of Gynecology and Obstetrics, 305 (2), 299-311.
  3. Ames JL, Ladd-Acosta C, Fallin MD, Qian Y, Schieve LA, DiGuiseppi C, Lee LC, Kasten EP, Zhou G, Pinto-Martin J, Howerton EM, Eaton CL, Croen LA. Maternal Psychiatric Conditions, Treatment With Selective Serotonin Reuptake Inhibitors, and Neurodevelopmental Disorders. Biol Psychiatry. 2021 Aug 15;90(4) :253-262. doi: 10.1016/j.biopsych.2021.04.002. Epub 2021 Apr 14. PMID: 34116791; PMCID: PMC8504533.

Photo Credit: Alicia Petresc on Unsplash

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