Maternity Autism Research Group
Information about autism relating to pregnancy and maternity care
Research
On this page, we share research where the findings could help to understand Autistic experiences of maternity. Some papers are written by MARG members, but much of the research is not affiliated with MARG. Not all research was conducted in a fully neurodiversity-affirming way. Alongside each paper, we have provided a short summary regarding the inclusion of Autistic people in shaping the research, the useful of harmful language about Autism, and the funder of the research.
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Research is vetted and added to this page by our voluntary research professionals- the content order reflects this i.e. is not a single systematic project.
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NB: researchers of papers featured on this page are encouraged to submit a lay summary to MARG in our ongoing effort to improve accessibility and research reach.
A Qualitative Exploration into the Sensory Experiences of Autistic Mothers | SpringerLink
Moyna Catherine Talcer, Orla Duffy & Katy Pedlow (2021)
This research was funded by an organisation not associated with harmful autism research. The first researcher is Autistic.
Autistic people had a small role in the study. A mixture of identity first and person first language is used.
This paper excludes self-identifying Autistic people.
This paper does not use functioning labels, which is best practice.
Love, Joy, and a Lens of Childhood Trauma: Exploring Factors That Impact the Mental Health and Well-Being of Autistic Parents via Iterative Phenomenological Analysis | Autism in Adulthood (liebertpub.com)
Smit, Simone and Hopper, Jeremy (2023)
The first researcher is Autistic. Identity first language is used in this paper, per Autistic community preference.
Autistic people were not involved as research partners (however this was clearly stated as a limitation of the project).
This research was unfunded. This paper includes self-identifying Autistic people.
Autistic women’s views and experiences of infant feeding: A systematic review of qualitative evidence (sagepub.com)
Aimee Grant, Sara Jones, Kathryn Williams , Jennifer Leigh and Amy Brown (2022)
This research was funded by an organisation not associated with harmful autism research. The first researcher is Autistic. Autistic people were involved in the creation of this project. Identity first language is used in this paper, per Autistic community preference. This paper includes self-identifying Autistic people. This paper does not use functioning labels, which is best practice.
Co-developing an Autism Research Funding Application to Facilitate Ethical and Participatory Research: The Autism from Menstruation to Menopause Project
Aimee Grant, Kathryn Williams, Karen Henry, Willow Holloway, Christina Nicolaidis, Helen Kara & Amy Brown
This research was funded by an organisation not associated with harmful autism research. The first researcher is Autistic. Autistic people were involved in the creation of this project. Identity first language is used in this paper, per Autistic community preference. This paper includes self-identifying Autistic people. This paper does not use functioning labels, which is best practice.
Autistic Women’s Experiences of the Perinatal Period: A Systematic Mixed Methods Review
Verity Westgate, Olivia Sewell, Doretta Caramaschi & Heather O’Mahen
The first researcher is Autistic
It is unclear if the research was funded.
A mixture of identity first and person first language is used. ( NB: per participant preference).
Autism spectrum disorder is described using deficit-based language in the background section. Instances of deficit-based language features but only from referenced, external sources.
Functioning labels are used from direct quotes from participants in the studies reviewed
'Childbirth Experiences of Women With Autism Spectrum Disorder in an Acute Care Setting',
Jane Donovan (2020)
It is unclear if the first researcher is Autistic.
Autistic people were not involved as research partners.
Person first language is used in this paper, this does not match Autistic community preferences.
This paper excludes self-identifying Autistic people
This research was funded by an organisation not associated with harmful autism research.
This paper does not use functioning labels, which is best practice.
A qualitative exploration of autistic mothers' experiences II: Childbirth and postnatal experiences
Sarah Hampton, Joyce Man, Carrie Allison, Ezra Aydin, Simon Baron-Cohen, Rosemary Holt (2021).
The first researcher is Autistic. Identity first language is used in this paper, per Autistic community preference. This paper does not use functioning labels, which is best practice. This research was funded by an organisation not associated with harmful autism research.
Autistic people had a small role in the study.
This paper excludes self-identifying Autistic people.
Autistic mothers' perinatal well-being and parenting styles
Sarah Hampton, Carrie Allison, Ezra Aydin, Simon Baron-Cohen, Rosemary Holt.
The first researcher is Autistic
Identity first language is used in this paper, per Autistic community preference
This paper does not use functioning labels, which is best practice.
Funding: harmful organisations were linked to auxilliary, non-contributory parties. MARG does not believe these organisations influenced research approach or results.
Autistic people had a small role in the study.
It is unclear if AQ scores prevented participation, nor whether self-identifying participants were allowed to participate.
“Until I Had My Son, I Did Not Realise That These Characteristics Could Be Due to Autism”: Motherhood and Family Experiences of Spanish Autistic Mothers
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It is unclear if the first researcher is Autistic
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Identity first language is used in this paper, per Autistic community preference
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This paper does not use functioning labels, which is best practice.
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This research was funded by an organisation not associated with harmful autism research.
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Autistic people had a small role in the study
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This paper includes self-identifying Autistic people (however, they only include self-identifying people who are awaiting a formal diagnosis but not self-identifying people who aren’t seeking a formal diagnosis).
Love, Joy, and a Lens of Childhood Trauma: Exploring Factors That Impact the Mental Health and Well-Being of Autistic Parents via Iterative Phenomenological Analysis | Autism in Adulthood (liebertpub.com)
Smit, Simone and Hopper, Jeremy (2023)
The first researcher is Autistic. Identity first language is used in this paper, per Autistic community preference.
Autistic people were not involved as research partners (however this was clearly stated as a limitation of the project).
This research was unfunded. This paper includes self-identifying Autistic people.
Autistic women’s views and experiences of infant feeding: A systematic review of qualitative evidence (sagepub.com)
Aimee Grant, Sara Jones, Kathryn Williams , Jennifer Leigh and Amy Brown (2022)
This research was funded by an organisation not associated with harmful autism research. The first researcher is Autistic. Autistic people were involved in the creation of this project. Identity first language is used in this paper, per Autistic community preference. This paper includes self-identifying Autistic people. This paper does not use functioning labels, which is best practice.
Perinatal issues for women with high functioning autism spectrum disorder
Cath Rogers, Laurence Lepherd, Rahul Ganguly, Sebastian Jacob-Rogers (2017).
It is unclear if the first researcher is Autistic
A mixture of identity first and person first language is used. (NB: per participant preference).
This paper uses functioning labels, which are outdated and harmful.
It is unclear if Autistic people were involved as research partners.
Pregnancy outcomes in women with autism: a nationwide population-based cohort study
Heléne Ek Sundelin, Olof Stephansson, Christina M Hultman, Jonas F Ludvigsson (2018).
It is unclear if the first researcher is Autistic. Person first language is used in this paper, this does not match Autistic community preferences. This paper uses functioning labels, which are outdated and harmful. This paper excludes self-identifying Autistic people. Autistic people were not involved as research partners. This paper excludes self-identifying Autistic people. This research was funded by an organisation not associated with harmful autism research.
Pregnancy and Parenthood Among Autistic Adults: Implications for Advancing Maternal Health and Parental Well-Being
Christina G. McDonnell, PhD and Elizabeth A. DeLucia, BA
It is unclear if the first researcher is Autistic
Identity first language is used in this paper, per Autistic community preference
This paper does not use functioning labels, which is best practice
This research was unfunded
Autistic people were not involved as research partners
This paper includes self-identifying Autistic people
This research was unfunded
The first researcher is Autisitic
Identity first language is used in this paper, per Autistic community preference
This paper does not use functioning labels, which is best practice.
“It Has Shown Me How Much I Am Capable Of”: An Exploration of Autistic Burnout Experiences in Motherhood. Authors: Ashton Ferguson, David Martin, and Amy Pearson
Henry, K. (2017). ‘Empowering women with autism’. Midwifery Matters. December 2017, 155, pp.10-11
The first researcher is Autistic
Identity first language is used in this paper, per Autistic community preference
This paper does not use functioning labels, which is best practice.
This research was unfunded
Autistic people were involved in the research as partners * as collaborative partners
This paper includes self-identifying Autistic people
Henry, K. (2017). ‘Empowering women with autism’. Midwifery Matters. December 2017, 155, pp.10-11
Supporting women with autism during pregnancy, birth and beyond, Turner (2017)
It is not clear whether the first researcher is Autistic
Person first language is used in this paper, against Autistic community preference
This paper uses functioning labels, which is against best practice.
This research was unfunded
It is unclear whether Autistic people were involved in the research as partners or as collaborative partners
This paper does not include self-identifying Autistic people
How do maternity services support autistic women and birthing people now? What improvements could be made to help autistic people who are pregnant and giving birth and the staff who support them?
King (2018)
The first researcher is Autistic
Identity first language is used in this paper, per Autistic community preference
This paper does not use functioning labels, which is best practice.
This research was unfunded
It is unusure whether Autistic people were involved in the research as partners * as collaborative partners
This paper includes self-identifying Autistic people
The first researcher is Autistic
Identity first language is used in this paper, per Autistic community preference
This paper does not use functioning labels, which is best practice.
This research was unfunded
Autistic people were involved in the research as partners * as collaborative partners
This paper includes self-identifying Autistic people
Perinatal issues for women with high functioning autism spectrum disorder
Cath Rogers, Laurence Lepherd, Rahul Ganguly, Sebastian Jacob-Rogers (2017).
It is unclear if the first researcher is Autistic
A mixture of identity first and person first language is used. (NB: per participant preference).
This paper uses functioning labels, which are outdated and harmful.
It is unclear if Autistic people were involved as research partners.
Pregnancy outcomes in women with autism: a nationwide population-based cohort study
Heléne Ek Sundelin, Olof Stephansson, Christina M Hultman, Jonas F Ludvigsson (2018).
It is unclear if the first researcher is Autistic. Person first language is used in this paper, this does not match Autistic community preferences. This paper uses functioning labels, which are outdated and harmful. This paper excludes self-identifying Autistic people. Autistic people were not involved as research partners. This paper excludes self-identifying Autistic people. This research was funded by an organisation not associated with harmful autism research.
Pregnancy and Parenthood Among Autistic Adults: Implications for Advancing Maternal Health and Parental Well-Being
Christina G. McDonnell, PhD and Elizabeth A. DeLucia, BA
It is unclear if the first researcher is Autistic
Identity first language is used in this paper, per Autistic community preference
This paper does not use functioning labels, which is best practice
This research was unfunded
Autistic people were not involved as research partners
This paper includes self-identifying Autistic people
This research was unfunded
The first researcher is Autisitic
Identity first language is used in this paper, per Autistic community preference
This paper does not use functioning labels, which is best practice.
“It Has Shown Me How Much I Am Capable Of”: An Exploration of Autistic Burnout Experiences in Motherhood. Authors: Ashton Ferguson, David Martin, and Amy Pearson
Henry, K. (2017). ‘Empowering women with autism’. Midwifery Matters. December 2017, 155, pp.10-11
The first researcher is Autistic
Identity first language is used in this paper, per Autistic community preference
This paper does not use functioning labels, which is best practice.
This research was unfunded
Autistic people were involved in the research as partners * as collaborative partners
This paper includes self-identifying Autistic people
Henry, K. (2017). ‘Empowering women with autism’. Midwifery Matters. December 2017, 155, pp.10-11
Supporting women with autism during pregnancy, birth and beyond, Turner (2017)
It is not clear whether the first researcher is Autistic
Person first language is used in this paper, against Autistic community preference
This paper uses functioning labels, which is against best practice.
This research was unfunded
It is unclear whether Autistic people were involved in the research as partners or as collaborative partners
This paper does not include self-identifying Autistic people
How do maternity services support autistic women and birthing people now? What improvements could be made to help autistic people who are pregnant and giving birth and the staff who support them?
King (2018)
The first researcher is Autistic
Identity first language is used in this paper, per Autistic community preference
This paper does not use functioning labels, which is best practice.
This research was unfunded
It is unusure whether Autistic people were involved in the research as partners * as collaborative partners
This paper includes self-identifying Autistic people
The first researcher is Autistic
Identity first language is used in this paper, per Autistic community preference
This paper does not use functioning labels, which is best practice.
This research was unfunded
Autistic people were involved in the research as partners * as collaborative partners
This paper includes self-identifying Autistic people