MIDIRS Monthly - Considering Care Pathway planning for autistic women to improve care outcomes and reduce health inequalities

By Diane Fox on 04 July 2023

Introduction

Do you know someone who is autistic? Have you looked after autistic people in pregnancy? You might have family experience and some understanding of Autism. Chances are you have looked after an autistic person but maybe did not know. Let’s explore this topic more in order to provide the best care. 

Background

The National Strategy for Autistic children, young people and adults 2021-2026 (DHSC 2021) outlines the UK government’s commitment to improving services. The strategy advises that all healthcare professionals and pre-registration students require mandatory training on Autism in order to improve care outcomes and address health inequalities. This includes acknowledging the difficulties autistic people can have accessing healthcare, coping with interaction with medical staff and coping with healthcare environments. Also, there is an appreciation that the waiting times for diagnosis can take many years due to service provision and funding constraints in some areas. Therefore, increasing the understanding and knowledge of maternity staff is crucial to ensuring equality and improving care outcomes. Is there a strategy in your Maternity provision to support women with Neurodiversity or mandatory training for staff? I have worked with the RCM to create an i-learn module on Autism and Pregnancy – available on the RCM website. 

Midwives work with families at the most joyous and challenging times of their lives, therefore having a good understanding of the family’s needs to essential. Some women may have a diagnosis of autism and may have some support in place, however many may not. McCrossin (2022) notes the 80% of women who have autism are not diagnosed by the time they turn 18. Therefore, many autistic women will be starting their pregnancy journey without the necessary understanding or support in place. The next steps would be to create Autism Leads and in-house training through co-production using women’s voices and experiences. Let’s explore this further. 

Why is this important for Midwives? 

Let’s consider the possible impact and presentation of autism in pregnancy and consider the outcomes further. It is important to consider how effective care planning and support in pregnancy can influence outcomes and the future of the whole family and the wider public health. 

Evidence Based Practice:

Current research has shown that autistic women have an increased prevalence of the following issues. 

Medical Conditions and Pregnancy Outcomes:

Psychological Impact: 

Social impact: 

Co occuring conditions: 

If all this information is considered, it can be acknowledged that this can lead to a very complex presentation needing lots of care planning and support across many healthcare settings and from many healthcare disciplines. Midwives could be the first step on that journey. Therefore, it is fundamental we are able to recognise and provide individual care planning for each woman accordingly. It is recognised that as the current diagnosis pathway can take many years it is important to support women who may self identify as autistic. 

Consider implementing the following steps:  

-Training of pre-registration staff and qualified staff at all levels in co-production with autistic women and families to allow autistic voices to be heard. 

-Using the screening tools as recommended by NICE such as the Autism Quotient (AQ10 or AQ50), listing 10 or 50 questions respectively for woman to complete in order to ascertain if further assessment may be beneficial. A trigger for screening to be completed would be if there was current Neurodiversity noted in the extended family. 

-Creating Autism and Neurodiversity Care Pathways, Guidelines and Best Practice in your Trust. Some NHS Trusts are already implementing pilots, developing pathways and guidelines. 

MARG (Maternity Autism Research Group) and its members are working with many organisations to raise awareness and representation, such as the RCM, NMC and RCOG, NHS Trusts, Autistic Parents UK, Autistic UK, the National Autistic Society, SANDS, The Breastfeeding Alliance, The Maternity Consortium, The Association of South Asian Midwives, The Neurodiversity Birth Podcast, Baby Lifeline, The Maternal Mental Health Alliance and London Maternity Services. If you would like to know more about the work MARG is doing or require support please reach out or see our website. We will shortly be launching a webinar, discussing in more detail the current academic research, exploring women’s voices and clinical care pathway development. 

Moving forward 

Let’s explore the evidence and frameworks that can improve and inform practice:

Dr Luke Bearden, a leading academic in autism research, explores how best outcomes are achieved by adapting the environment to accommodate an autistic person’s needs. Whilst also recognising that all individuals have different levels of need. Care should be person led working with the ethos that autistic people like to do things in the own time and space – My Own Time and Space (MYOTAS). 

Also , the SPELL FRAMEWORK as advocated by the National Autistic Society is an excellent model of care tool for healthcare settings. The aim is to provide a:  

Structured and predictable routine of care planning

Positive approaches and expectations 

Empathy in all interactions, providing care without bias

Low arousal to sensory stimuli in the care environment 

Links for long term care planning and public health through liaison with GP’s and HV’s. 

Communication tools: 

The following can be utilised to support staff and women accessing care.

-The National Autistic Society ‘Healthcare Passport’ can be completed by women detailing their specific sensory, communication and physical needs. This should be used across care settings and discussed with women so that they can feel understood, seen and supported without having to articulate their needs constantly or repeat information as this can be very exhausting and overwhelming. 

-Also, the Autistic Girls Network (AGN) have a ‘Letter to the Healthcare Professional’ written on behalf of women who may not be able to advocate for themselves sometimes. This outlines the possible needs of autistic people and signposts further resources for the healthcare professional. The website also has a step by step guide to pregnancy for autistic women outlining appointments and what to expect in pregnancy in an autistic friendly way. 

- Create a list of ‘Reasonable Adjustments’ in partnership with autistic women that can be utilised to offer maternity care that accommodates their specific needs. This may include, having an appointment first thing to avoid busy waiting rooms, home visits, minimising telephone contact as this can be overwhelming, providing Continuity of Carer, offering support from a known midwife in labour, consider low lighting and minimal sensory stimulation in labour and birth. Also, consider extra visits in the postnatal period, monitor psychological and physical impact in a considered and focused way. Give lots of time and attention to the women’s and families needs. 

Next Steps: 

The next step is for more research to be done to highlight the outcomes of pregnancy for autistic women and families and focus on the care needs, the challenges and best practice solutions to improve care in Maternity.