A Story of Change: Reimagining Autism in Maternity Care, by Sara King

This wonderful piece by Vice Chair Sara King symbolises the last day of Maternal Mental Health Awareness week here at MARG and offers personal insight as well as a stirring call to action.

Published 10/05/2026

VIce Chair Sara King

A Story of Change: Reimagining Autism in Maternity Care

To think about the future, we must first understand the past and the present.

This is a story of change- change led by passionate people, sharing their personal stories. It is a story still unfolding, shaped by autistic voices, allies, and professionals committed to doing better. And it is a call to action: to continue building a future where maternity care is genuinely inclusive, informed, and humane- particularly in how we understand and support autistic maternal mental health.

Looking Back: What History Teaches Us

Recently, I attended a powerful performance that told the story of how autistic people were treated on the site of a local psychiatric hospital, which has been closed now for thirty years. Through vivid storytelling, the actors brought to life experiences of exclusion, misunderstanding, and harm- while drawing stark connections to practices that still echo today, through their own recent, personal experiences.  Whilst this was not maternity specific, it was a very human story that affected me significantly and demonstrated the impact of personal stories.

It was a reminder that the past is not as distant as we might like to believe.

Historically, autism has too often been framed through a deficit lens- something to be explained, controlled, or even “fixed.” Research priorities reflected this. For decades, significant attention was given to identifying the “causes” of autism, often through studies far removed from real human experience. Even now, the main body of research continues to focus on causation or cure, rather than on improving lived experiences and support.  And this perspective shapes practice.

My Personal Story: From Experience to Inquiry

In maternity services, until very recently, autism was barely part of the conversation. My own experiences of pregnancy and care more than 15 years ago reflected this silence. At the time, I did not yet even understand myself as autistic- simply could not see or hear myself reflected in the dominant narratives of pregnancy, birth, and parenting.

What I did understand, however, was the feeling of being different.

I remember the intensity of my sensory experiences, the need for quiet and calm in environments that often felt overwhelming, and the deep, persistent need for information. I needed to understand what was happening, what might happen next, what my choices were. I needed enough detail to feel grounded and reduce my anxiety-to make decisions, to feel confident I was doing the right thing for my babies.

Looking back now, those feelings make complete sense to me.

Following the births of my children, one emergency caesarean section followed by one planned, I experienced postnatal depression and anxiety, alongside what I would now recognise as autistic burnout. At the time, these experiences were understood through a conventional mental health lens—but that interpretation never fully explained what I was going through and the support, whilst well-intended, was inadequate.  

There was no language, no shared understanding, and no recognition of the maternity environment not suitably supporting my sensory experiences, processing style, and need for predictability and information. There was no understanding of the resulting impact on my mental health.  Revisiting these experiences many years later—through a different lens of self-understanding- prompted a question that stayed with me: how might other autistic people have experienced this journey?

That question became the foundation for my PhD.

My research explored maternity care in England from a dual perspective—both maternity services staff and autistic service users. As I immersed myself in the literature, the process became deeply personal. Reading study after study- many conducted on animals, many framed around causation or cure- was harrowing. It highlighted not only gaps in knowledge, but a profound gap in perspective: where were the voices, experiences, and priorities of autistic people themselves? And where was the understanding of autistic mental health in this context?

My thesis, now submitted and awaiting viva examination, tells a story of epistemic injustice, of insufficient resources, and of systems that have not yet fully caught up with the people they are meant to serve. It also highlights how autistic women and birthing people are often misunderstood within mental health frameworks- frequently experiencing misdiagnosis or having co-occurring conditions that are not fully recognised or appropriately supported.

These experiences- mine and those of many others- highlight a simple truth: maternity systems were not designed with autistic people in mind, nor with autistic maternal mental health at their centre. In the context of current challenges in maternity services for all, some groups are disproportionately disadvantaged. 

My PhD journey led to contact with other autistic people who had been thinking and feeling the same about the need for change, carrying out their own research or shaping practice in their workplace – and the birth and growth of Maternity Autism Research Group (MARG).

The Present: Signs of Real Change

Change is happening.

You can feel it in the conversations taking place today. Autistic voices are no longer at the margins; they are leading the way. Autistic people - midwives, student midwives, researchers, healthcare professionals, and allies are shaping new narratives, challenging old assumptions, and advocating for meaningful change.  There is a growing recognition that expertise lives in lived experience- particularly when it comes to understanding mental health and well-being.

Across the UK and internationally, momentum is building. Groups such as MARG are expanding their reach, bringing autistic voices and allies together to drive forward best practice. Their influence is being seen in guidance, training, and the beginnings of service redesign.

Professional bodies are beginning to engage more actively with autism in the context of maternity care, including its intersection with perinatal mental health. Services are starting to ask important questions: How can environments be adapted? How can communication be improved? How can care become more responsive to neurodivergent needs? And critically—how can we better understand and support autistic mental health across the perinatal period? 

We are also seeing the early implementation of autism-informed pathways in some areas—an encouraging step toward more tailored, person-centred care. 

At the same time, research is evolving. Increasingly, studies are being led- or co-produced- by autistic researchers, bringing authenticity, relevance, and depth to the evidence base.

Looking Ahead: What Still Needs to Change

While progress is evident, there is still much to do.

1. Increasing Research

We need more research that takes a neurodiversity-affirming approach.

This includes:

• Evaluating new autism-specific pathways in maternity services to ensure they are effective and sustainable, and that newly published research findings are incorporated 

• Conducting large-scale research with maternity staff and other professionals to understand knowledge gaps, training needs, and examples of best practice

• Exploring co-occurring conditions, misdiagnosis, and intersectionality to better understand diverse mental health experiences

• Exploring the experiences of the voices that are missed in research – we need creative, proactive ways to ensure their voices are heard and shared

Crucially, research and practice must reflect the reality that pregnancy and birth do not happen in isolation. Care must be holistic-recognising the whole person, including their mental health history and needs.

2. Strengthening Peer Support

Peer support has enormous potential, but quality matters.

We need to better understand:

• What effective peer support looks like for autistic people

• How to structure and sustain it

• How to ensure it benefits both those receiving and those providing support, in an ethical and sensitive way

For many autistic parents, connecting with others who share similar experiences can be profoundly protective for mental health, in addition to providing practical support

3. Focusing on the Whole Perinatal Journey

There are still significant gaps in our understanding of specific experiences across the perinatal period.

Emerging autistic-led research has explored areas such as pregnancy and breastfeeding, and further research is required to explore these topics and others such as infertility, hormonal issues such as PMDD, and other research focussing on different stages of the perinatal experience including particular times of vulnerability such as the postnatal period.

4. Embedding Trauma-Informed and Inclusive Care

Trauma-informed care should be central to all maternity services for autistic people. Autistic women and birthing people are more likely to have experienced trauma, whether through healthcare encounters, misdiagnoses or previous life experiences.

Mental health support must reflect this.

Perinatal mental health services need to:

• Understand autistic thinking styles and communication 

• Recognise that presentations of distress may differ from neurotypical expectations

• Consider histories of trauma, misdiagnosis, or long-standing unmet needs

• Recognise that a maternity experience that may seem ‘normal’, may be perceived differently by an autistic person

We must also consider those who are identified as autistic later in life. How do we support individuals who are reflecting back on their maternity experiences with new understanding? What does healing or reprocessing those experiences look like?

5. Supporting Maternity and Perinatal Mental Health Staff For meaningful and sustainable change to occur, maternity and perinatal mental health staff must be supported in their roles with the right tools, training, and resources.  Staff in my research project demonstrated compassion, and a genuine desire to provide the best possible support for all individuals. However, there are clear and persistent barriers that can make this difficult in practice. These include limitations in time, access to up-to-date information, availability of training, and wider resourcing pressures within services. Recognising these challenges is essential. By equipping staff with the knowledge, confidence, and practical support they need, we enable them to translate their intentions into truly inclusive, responsive care for autistic people.

A Call to Action

Ultimately, change depends on people. In healthcare, it is also shaped by policy, guidelines, training, and the cultures we create within services.  

It requires professional curiosity- the willingness to ask questions, to listen, and to learn.

It requires kindness- the commitment to seeing each person as an individual, deserving of dignity and respect.

And it requires courage- the determination to challenge outdated practices and push for better.

But crucially, it requires a transformation in how we understand maternal mental health.

Perinatal mental health support must move beyond one-size-fits-all models. It must recognise autistic ways of thinking, processing, and experiencing the world. It must take into account that autistic women and birthing people may have:

• Histories of misdiagnosed or misunderstood mental health conditions

• Co-occurring diagnoses that require nuanced support

• Higher likelihood of having experienced trauma

Without this understanding, support risks missing the mark- and in some cases, potentially causing further harm.

Research alone is not enough. Evidence must be translated into practice, embedded into policy, and championed across systems.  The evidence base is expanding. Change is starting to take place. If we continue to build on this momentum- working collaboratively, centring autistic experiences, and remaining open to learning- we can create maternity services that truly meet the needs of all.   A future that is not only more inclusive- but one that actively protects and supports the mental health of autistic women and birthing people.