Holding Both: Professional Practice and Personal Experience in Autistic Perinatal Mental Health- Lynette Morgan

TRIGGER WARNING- this mentions; pregnancy loss, mental illness, and suicide

NB: All images and content are the intellectual property of Lynette Morgan and cannot be reused without permission. Lynette's contact details are available on the MARG Our Team page.

Professional introduction

I worked as a community perinatal mental health care coordinator for two years. A care coordinator oversees the care plans, evaluates progress and liaises with multiple agencies (social care, health care, psychiatry, psychology and therapies etc). I had a fluctuating case load of between 30-40 people. All were enduring unbearable mental illness relating to the transitional perinatal period (pregnancy up to two years post-delivery). Within a few months of my role, I noticed a theme in my case load; most of them were autistic/ ADHD.

Personal introduction

My first pregnancy was unplanned; I was in my 23rd week of pregnancy when I found out I was pregnant. Within a few weeks of finding out I was pregnant I experienced listeriosis and had a threatened miscarriage as a result. Although I was 22years old when I found out I was pregnant, I was naïve, emotionally vulnerable and not at all prepared for the transition to parenthood.

When my child was born, I experienced a dissociative episode which disconnected my mind from the shock. I remember still feeling the physical overwhelm I felt because of the burden and oppressive sense of mortality.

Mother-daughter sketch by Lynette Morgan

My bond with my child was affected and my attachment was severely delayed. This meant that our reciprocal relationship was ineffective. My child was inconsolable, and so was I. Historical feelings from my own experiences of being parented played continuously in my mind. I became fixated on my past and I felt powerless to prevent the same experiences for my child. I was suffering with severe postnatal depression and anorexia.My last pregnancy I experienced heightened anxiety throughout. I had experienced multiple pregnancy losses and a molar pregnancy, I was also in my 40’s. I had been a neonatal nurse for 13years and I was unavoidably aware of risks. I became hyper vigilant, particular to anomalies or for potential environmental, or extraneous triggers.

My focus was on neurodevelopment, and I had anxieties about everything. I did’nt sleep. I developed OCD.

My daughter struggled to breast feed, this had a profound impact on my wellbeing. I obsessed about the nutritional and immunological benefits of breast milk as well as the power of building our attachment relationship. At 3 weeks old her weight had plateaued and a midwife told me I’d have to stop breast feeding. This cause me to feel so much like a failure that I became suicidal. Her future was unravelling before me.

Reflections

My daughter had a high palate, I had Reynaud’s in my nipples, I suffered severe pain and damage. The mistake the midwives visiting me made was that they couldn’t look past my job, or that I was not a first time mum, to see how desperate I was. I was incredibly unwell, both physically and mentally and not one professional spotted it. I believe they assumed I’d be best placed to know what to do, but there comes a time when you are so unwell that you can no longer see clearly enough to advocate for yourself. It was a friend and ex colleague who helped me use a different feeding technique (the flipple) which revolutionised my experience.

With my eldest, our health visitor spotted that I was unwell, and she supported me weekly for many months. I’m very grateful to her, and my friend.

By the time I joined the perinatal mental health team, my youngest daughter was 2. I was still struggling with prevailing symptoms of anxiety, hypervigilance and OCD. I was faced with people with very similar difficulties to me. I’d listen to their stories, and with double empathy reflect and draw on my own experiences. I remember one person saying to me that I gave her perspective which she found very helpful. But I was basically a mirror, I was merely reflecting their own capacity to navigate their unique world, validation and containment were the natural outcome.

In Practice

After working consistently with people under the perinatal service, a theme of autistic experience reoccurred. Until this time, my experience of autism was blithely ignorant, despite my eldest being diagnosed in childhood and my husband diagnosed recently. But I saw autism in an entirely differently from the ‘male brains’, I had to reconsider my understanding.

This was pivotal for me as a professional, and I hope for those I was supporting. It was clear that in addition to those who had a diagnosis, there were many who were undiagnosed autistic. The range of presentations, reasons for the perinatal mental health input, difficulties etc were vast. They included: psychosis, OCD, depression, drug/ alcohol misuse, suicidality and attempts, etc. Some were likely misdiagnosed with a personality disorder, others with bipolar, some with many diagnoses, and others with co-occurring diagnoses.

Ultimately, a key theme for many of these people, was their struggle with transition, of significant sensory trauma and crucially, a lack of awareness of why. Many of them, like me, were ruminating heavily on their experiences of being parented. Comparing themselves to impossible ideals, they were overwhelmed, burnt out and lacked self-understanding and autonomy.

In MDT meetings where autistic people were presented as ‘complex’ (a label often fixed on people who aren’t understood). Clinicians explained that the autistic person would be contradictory not following their prescribed course of interventions. I don’t think it had ever occurred to them, or indeed me until then, that their healing and processing was unlikely to look the same as the predominant neurotype.

There was a feeling that the autistic people were a ‘them’ distinct from ‘us’, that somehow human experience and their behaviours were attributable to something categorically different. There was a similar tack with people diagnosed with personality disorders. It was this which really sparked something viscerally deep in me, a primal discomfort with this dichotomy of us and them. I questioned whether this was a way to protect the professionals from their own deviations from ‘normal’.

The Unseen

The story of Daksha Emson ringing in my mind, the power of stigma was hard to ignore. What worried me was not just the misconceptions about autistic people, but the fears of autistic people to share their truth for fear of being discriminated against.

They were inclined to either hold back and mask or tell you too much, leaving themselves exposed. Their distress was misinterpreted, mismanaged or dismissed. They wanted clarity and understanding of what was happening to them. This was crucial, and remains a critical point, because if the baseline of knowledge is flawed/ out of date; it’s not possible to help people to find their own understanding. And instead, people are told what they ‘should’ feel, how they ‘should’ act and what they ‘should’ do. But if you are autistic with an alexithymic interoception overlap none of that makes sense.

Several of the women I worked with experienced severe distress during delivery. It was often misunderstood, resulting in social services referrals, interventions and sometimes admitted on to the mother and baby unit. The implications this had for their relationship with their babies and family was considerable.

Crossing the line

I was reflective about my perinatal experiences; it was the reason I wanted to work in perinatal mental health. I hoped to use my experiences to help people whilst developing my knowledge in mental health. I didn’t expect to gain the life changing realisation of my own undiagnosed autism. From the moment I realised, it changed everything for me and my work. Every person I approached as a blank book, and between us we would work to tell their story. It was truly liberating. I started to recognise how interwoven my experiences had been as an undiagnosed autistic person, and how this had impacted the entire foundation of my life. The key realisations were about autonomy and boundaries. One of the autistic lady’s told me that she had struggled to create and maintain boundaries. Whilst we explored that, I realised how years of being told that my feelings weren’t valid had left me with no idea about what was ok to be tolerated and what wasn’t. This was a pivotal step for forming my autonomy. And with this I was able to help the people I worked with to do the same.

Forming experiential informed care

It was difficult to unsee the unseen for me, in that I was no longer able to ignore how my own experiences influenced my advocacy, my approach and my connection with their experiences. I only worked for the service for two years, in that time I had metamorphosed into an advocate. I was frustrated by systemic failures for autistic people and realised that change needed to come at an operational level. Most, if not all of those under perinatal mental health care who were autistic had experienced epistemic injustice, years of missed opportunities and trauma. And the implications in my mind, were huge, effects on families and future their development.

I immersed myself fully in contemporary research and developed an understanding which enabled me to help my colleagues. I told psychologists about my observations, I reframed behaviours which had been attributed as deficits. Creating a narrative which was inline with my truth, and that of the people under my care. I was told after I left that I had influenced changes in practice and knowledge.

The future

My hopes and aspirations for perinatal mental health care would be to consider autism during the assessment process. I want heterogeneity, intersectionality and co occurring diagnoses and how they interplay, to be better understood. Especially in the context of autistic experience of childbirth pregnancy and transition into parenthood. A much better understanding of hormonal influences on sensory processing, and the implicit changes in mood.

Cohesive collaborative work between maternity and perinatal mental health to ensure early support where needed, peer support from autistic people who have had perinatal mental illness.

I want for the autistic parents to understand the burden of epistemic injustice and stigma they are carrying. How this leads to feelings of guilt and shame at not meeting the expectations of ‘normal’ recovery and experience. I want them to be free of that. I want them to connect with joy and thriving.