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Autistic Pregnancy, Birth, and Beyond

A collaborative project

Autistic Parents UK is proud to have partnered with Dr Aimee Grant from Swansea University, Autistic UK, and the Research Wales Innovation Fund to address a critical gap in understanding the experiences of Autistic parents throughout pregnancy, birth, and the early postnatal period.

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Why This Matters

Historically, research focused on Autistic parenting experiences has been limited. This lack of information hinders healthcare professionals from providing tailored support and can intensify feelings of isolation for Autistic parents.

Our Key Contributions

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  • Identifying Real-World Needs: We worked closely with the project partners to ensure the project addressed the most pressing questions and challenges faced by Autistic parents. This helped guarantee the resulting resources would be genuinely relevant and impactful.

  • Sharing Authentic Perspectives: Our team's lived experiences as Autistic parents were integral to the video series. We provided firsthand insights, fostering a sense of understanding and relatability for viewers.

  • Multidisciplinary Expertise: Our team's diverse professional backgrounds, including breastfeeding counsellors, antenatal and postnatal educators, a lactation consultant, researchers, and social workers, enriched the project. We offered specialised knowledge to guide the content and ensure its accuracy.

  • Community Outreach: We played a vital role in promoting participation among Autistic parents, ensuring the project captured a wide range of experiences and perspectives.

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The "Your Questions Answered" Resource

The "Autistic Pregnancy, Birth, and Beyond: Your Questions Answered" video series is a unique and invaluable resource designed and created by Autistic people. It tackles 15 key topic areas, offering:

  • Practical Guidance: Advice on navigating healthcare appointments, managing sensory sensitivities, and understanding the physical changes of pregnancy and the postpartum period.

  • Strategies for Communication: Tips for effective communication with medical professionals, family, and support networks tailored to Autistic communication styles.

  • Community and Validation: A powerful reminder for Autistic parents that they are not alone in their experiences.

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Please read what Dr Aimee Grant has said about the project here and see the playlists on the Autism: from menstruation to menopause YouTube channel below.

Experiencing morning (noon and night) sickness in pregnancy | Cathy Jackson
03:14

Experiencing morning (noon and night) sickness in pregnancy | Cathy Jackson

Cathy Jackson is an Autistic parent. In this video, Cathy discusses what she calls “morning, noon and night sickness” throughout her pregnancies. She notes some of the changes she experienced because of this. including changing what food she liked and disliked, and increasing the amount she ate as a coping mechanism. 00:00 “Morning, noon and night sickness” 01:11 Linked to hunger 02:39 Other side effects This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
Feeling your baby’s movements during pregnancy | Cathy Jackson
03:09

Feeling your baby’s movements during pregnancy | Cathy Jackson

Cathy Jackson is an Autistic parent. In this video, Cathy discusses one of her most positive experiences of pregnancy – feeling her baby moving in her womb. She discusses her increased feelings of interoception (the sense of what is happening in one’s body), what the movement might feel like and why she enjoyed it. 00:00 Strong interoception 00:50 How movements benefited Cathy 01:48 What it feels like This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
How pre-existing conditions can change during pregnancy | Ruth Jenks
03:11

How pre-existing conditions can change during pregnancy | Ruth Jenks

Ruth Jenks is an Autistic Antenatal Educator. In this video, Ruth discusses how pre-existing conditions, such as epilepsy, Ehlers-Danlos Syndrome (EDS), POTS (Postural Tachycardia Syndrome), heart related conditions or those which require a specific diet, are impacted by the physical and hormonal variations during pregnancy. 00:25 Knowing your baseline 00:55 Some conditions which may change 02:01 Conditions which require a specialist diet 02:21 Ensuring healthy communication This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
Severe itching in pregnancy (obstetric cholestasis): an Autistic parent’s perspective | Kat Williams
02:38

Severe itching in pregnancy (obstetric cholestasis): an Autistic parent’s perspective | Kat Williams

Kat Williams is an Autistic parent and PhD researcher. In this video she discusses her experience of severe itching in pregnancy (also known as obstetric cholestasis). Kat describes an initial misdiagnosis, eventual diagnosis and the induction of her pregnancy. Content warning: mention of stillbirth. 00:20 - Dermatographia - info can be found here https://www.bad.org.uk/pils/urticaria-and-angioedema/ 00:28 - Polymorphic eruption of pregnancy - info can be found here https://www.bad.org.uk/pils/polymorphic-eruption-of-pregnancy/ 01:21 - Typical timescale for inducing birth This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting #ObstetricCholestatis
Changing relationships with partners, family and friends in pregnancy and parenthood | Ruth Jenks
03:01

Changing relationships with partners, family and friends in pregnancy and parenthood | Ruth Jenks

Ruth Jenks is an Autistic Antenatal Educator. In this video, she talks about how pregnancy can change relationships with friends, family members and partners for Autistic people. She describes the importance of discussing things openly with loved ones, setting expectations and communicating priorities. 00:00 Relationship changes in pregnancy 00:29 Opening up communication 01:14 Written communication 02:04 Knowing your "love language" 02:32 Autistic communication style This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
Early Pregnancy Unit: an Autistic person’s perspective  | Aimee Grant
04:42

Early Pregnancy Unit: an Autistic person’s perspective  | Aimee Grant

Aimee Grant is an Autistic academic researcher. In this video they discuss their experience of attending the Early Pregnancy Unit for an ectopic pregnancy. Trigger warnings: Pregnancy-related issues, miscarriage. 00:00 Experience of the Early Pregnancy Unit 00:36 Arrival 01:24 Consultation 02:50 Staying at the unit 03:40 Surgery and experiences of the ward This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #EarlyPregnancyUnit
Your rights during birth | Alexis Quinn
03:23

Your rights during birth | Alexis Quinn

Alexis Quinn is a Psychotherapist and an Autistic parent. In this video, Alexis reinforces that Autistic parents have a right to make informed decisions and to give or withdraw consent throughout birth and other maternity care. 00:20 You have a right to make decisions about your body 01:35 Providing consent 02:11 Being listened to 02:26 The right to reasonable adjustments 03:01 Decisions made with you. This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
Giving birth at home | Ruth Jenks
03:12

Giving birth at home | Ruth Jenks

Ruth Jenks is an Autistic Antenatal Educator. In this video, Ruth discusses the potential benefits of giving birth at home for Autistic people, for example feeling more control over your sensory environment, including external involvement, lights, sounds and access to safe foods. Ruth references the following studies: This Birth Place Study (2015) https://www.npeu.ox.ac.uk/birthplace/birthplace-follow-on-study The Lancet paper (2020) https://www.thelancet.com/pdfs/journals/eclinm/PIIS2589-5370(20)30063-8.pdf 00:36 Autistic specific benefits of home birth. 01:46 Sensory environment autonomy This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
Staying in hospital - expectations vs. reality: an Autistic parent's perspective | Kat Williams
03:42

Staying in hospital - expectations vs. reality: an Autistic parent's perspective | Kat Williams

Kat Williams is an Autistic parent and PhD researcher. In this video, she discusses staying in hospital and how this differs from what you might expect from seeing medical TV shows. This includes: being subject to visiting hours, making the bed yourself and establishing breastfeeding alone. She adds some top tips for staying in hospital longer than expected. Content warning: mentions of blood, medical procedures. 00:00 It's not the same as on TV 00:43 You share a space 01:41 An expectation to do everything yourself 02:16 All babies stay in cots next to you 02:47 Top tips This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
After pains: an introduction | Brianna Dymond
01:19

After pains: an introduction | Brianna Dymond

Brianna Dymond is an Autistic parent and lactation consultant (IBCLC). In this video she discusses after pains following birth, why they occur and things that might help Autistic people to cope with after pains including: breathing techniques, warmth, and movement. Content warning: pain. 00:00 What are after pains? 00:37 Pain management 00:45 Coping with after pains This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting #AfterBirthPain
Pains after giving birth (“after pains”): an Autistic parent’s perspective | Willow Holloway
03:41

Pains after giving birth (“after pains”): an Autistic parent’s perspective | Willow Holloway

Willow Holloway is an Autistic parent and executive director of Autistic UK. In this video, she speaks about the intensity of the pelvic pain she felt after birth (sometimes called “after pains”) and how these were responded to by health professionals. Willow also gives tips for adapting to these pains and when to seek advice from a health professional. 01:02 Soothing pains 01:51 Breastfeeding pains 02:28 "Getting worse" with every pregnancy 02:41 Seeking advice This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
“Tears” during birth, the post-birth examination and repairing tears with stitches | Karen Henry
07:28

“Tears” during birth, the post-birth examination and repairing tears with stitches | Karen Henry

Karen Henry is an Autistic registered midwife and lecturer. In this video she discusses tears to the genitals (vagina and perinium) during birth. Karen describes the processes involved in vaginal and rectal examinations which are done after birth. She also details the suturing (“stitches”) process that will be followed if a tear is present. Karen also discusses pain relief available and coping mechanisms for dealing with this type of examination and stitches. 00:36 Examination following birth 02:13 Types of tear 03:31 Repairing tears 05:04 Aftercare of stitches This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
Special Care Baby Units: an Autistic parent’s perspective | Willow Holloway
04:58

Special Care Baby Units: an Autistic parent’s perspective | Willow Holloway

Willow Holloway is an Autistic parent and executive director of Autistic UK. In this video Willow speaks about her experiences of having a baby in the Special Care Baby Unit. This includes, how it impacted feeding the baby and bonding moments. Trigger warning: loss of a child. 01:35 Anxiety reactions to the environment 02:28 Working with a small team 04:02 Leaving and going back to the ward This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
Small and low birth weight babies: an Autistic parent’s perspective | Willow Holloway
05:23

Small and low birth weight babies: an Autistic parent’s perspective | Willow Holloway

Willow Holloway is an Autistic parent and executive director of Autistic UK. In this video, she discusses the loss of control and fear she felt when her first baby was delivered. Willow talks about how she was impacted physically and emotionally by the care she received, and the environment she was placed in, due to giving birth to a low-weight baby. Content warning: medical procedure, bodily injury and anxiety. 00:50 Memories of a forceps delivery 01:41 The post-natal ward 02:46 The high dependency unit and anxiety 04:18 Not given a reason for a small baby This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
An introduction to the Postnatal ward | Diane Fox
09:18

An introduction to the Postnatal ward | Diane Fox

Diane Fox is an Autism Specialist Midwife. In this video she outlines what to expect on the post-natal ward including the: types of staff who work there, layout of the ward and the typical schedule for the day in a UK hospital. She also outlines the checks midwives will carry out for you and your baby. Content warning: mentions of blood. 00:02 Layout 00:32 Options for private rooms 00:57 Staff you may meet 01:23 Doctors you may meet 01:40 Telling everyone apart 02:36 Doctors' routines 02:55 When the doctor comes to you 04:05 Preparing for going home 05:37 Daily midwife checks: You 08:07 Daily midwife checks: Baby 08:59 If you have any concerns This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting #PostnatalWard
What treatment is available for ectopic pregnancies in the UK? | Aimee Grant
05:14

What treatment is available for ectopic pregnancies in the UK? | Aimee Grant

Aimee Grant is an Autistic academic researcher. In this video, they discuss treatment for an ectopic pregnancy (a fetus that develops outside the uterus). She also outlines potential symptoms, how to seek support and what options there are for treatment. She reinforces the importance of seeking help if you think you are experiencing an ectopic pregnancy. Trigger warnings: pregnancy-related issues, surgical procedures. 00:00 Signs of an ectopic pregnancy 00:48 Fallopian rupture 01:14 What to do if you may be having an ectopic pregnancy 02:08 What happens in hospital for this 02:27 Treatment options This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #EctopicPregnancy
Ectopic pregnancy: an Autistic person’s perspective | Aimee Grant
04:13

Ectopic pregnancy: an Autistic person’s perspective | Aimee Grant

Aimee Grant is an Autistic academic researcher. In this video, she discusses her experiences of the Early Pregnancy Unit during the COVID-19 pandemic. She adds tips about what to bring to help with waiting times and sensory sensitivities. Trigger warnings: Pregnancy-related issues, mention of miscarriage, medical and surgical procedures and Autistic meltdown. 01:06 Phoning the Maternity Unit 01:26 Contacting a GP 02:45 Organising a private scan 03:39 Access support This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #EctopicPregnancy
Bleeding when pregnant: how much is too much? | Diane Fox
04:01

Bleeding when pregnant: how much is too much? | Diane Fox

Diane Fox is an Autism Specialist Midwife. She talks about what to do when you are pregnant if you start bleeding from your vagina. Diane describes who you will speak to, what they will ask and some of the actions that may be taken. She discusses bleeding throughout pregnancy and after birth. Trigger warning: blood, pregnancy complications. 00:26 - Early pregnancy bleeding 01:45 - Later pregnancy bleeding 02:04 - Phoning the hospital 02:31 - Bleeding in labour 02:58 - Post-birth blood loss This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
Still Birth: an introduction to terms and procedures | Karen Henry
07:26

Still Birth: an introduction to terms and procedures | Karen Henry

Karen Henry is an Autistic registered midwife and lecturer. In this video, she talks about pregnancy loss and still birth. She explains some of the medical terms used at this time and the processes involved in labour induction. She also outlines the comfort processes which are offered following your baby‘s death including: holding your baby, bathing your baby and creating hand and foot prints. Trigger warning: Loss of child, stillbirth, miscarriage. 00:24 Different descriptions used 01:28 What you can expect 02:33 When baby is born 02:58 Options after still-birth 06:56 Grieving is important This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
I have concerns about my pregnancy | Karen Henry
07:08

I have concerns about my pregnancy | Karen Henry

Karen Henry is an Autistic registered midwife and lecturer. In this video she discusses how to address any concerns you may have. This includes using social media, contacting GPs and midwives via the telephone or regular appointments. She also discusses some of the symptoms which can be signs that something is wrong for which you should seek medical attention. Content warning: Pregnancy-related issues. 00:16 Non-urgent questions 01:03 Urgent questions - what is "urgent"? 01:19 Vaginal bleeding (link to video on this topic?) 01:30 Pain going to the loo 01:55 Severe vomiting 02:19 Vaginal leaking 02:46 Abdominal pain 02:59 Abdominal tightenings 04:16 Baby movements 05:01 Phones and reasonable adjustments This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting
Bleeding in pregnancy | Karen Henry
03:56

Bleeding in pregnancy | Karen Henry

Karen Henry is an Autistic registered midwife and lecturer. In this video she lists some of the reasons bleeding may occur during pregnancy, what is normal and when to contact your maternity unit to be assessed. Content warning: pregnancy-related issues, blood. Content warning: Pregnancy-related issues, blood. 00:02 Definition 00:33 Early pregnancy 01:27 Late pregnancy 02:04 Bleeding after sex 03:17 Always treat as abnormal This video is part of a series created for Autistic Pregnancy, Birth and Beyond: Your Questions Answered, in collaboration with Swansea University, APUK, MARG and HEFCW. All content was developed by Autistic people, both from a professional and a personal perspective. #ActuallyAutistic #AutismSupport #Autism #AutisticPregnancy #AutisticParenting

Impact

With over 100 videos, this resource provides both Autistic parents and healthcare professionals with essential knowledge. We are proud to have helped create this comprehensive guide that has the potential to improve birth experiences, reduce stress, and build a stronger support system for Autistic parents.

 

We are committed to sharing this groundbreaking resource and advocating for the unique needs of Autistic parents throughout their journeys.

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