Navigating the Neonatal Unit as a Neurodivergent Parent
The neonatal unit (NICU - neonatal intensive care unit) is a place where emotions can run high, and where new parents and their babies are thrust into a world of medical terminology, beeping monitors, and sleepless nights. For neurodivergent parents, this experience can be uniquely challenging and emotionally exhausting.
In this blog, we explore the experiences of neurodivergent parents navigating the neonatal unit, offering insights, understanding, and support.
What Makes the NICU Harder for Neurodivergent Parents?
The Overwhelming Sensory Environment
One of the most immediate challenges for neurodivergent parents in the neonatal unit is the sensory environment. The constant noise of alarms, the bright lights, the sterile smells—all of these can be incredibly overwhelming, especially for those with heightened sensory sensitivities.
This sensory overload can make it difficult to focus, process information, or even be fully present with their newborn.
Imagine walking into a room where the sound of a monitor’s beep is sharp enough to make you flinch, where the lights seem too bright no matter how much you squint, and where the smell of antiseptic clings to you, making you feel constantly on edge. The physical experience of the mother or birthing person can also be highly sensory; parents may be in pain, trying to manage expressing milk, and many other experiences.
For neurodivergent parents, this sensory overload can make it difficult to focus, process information, or even be fully present with their newborn.
The Emotional Rollercoaster
The emotional journey of a neonatal admission can be a challenge for any parent. The shock and disappointment of an unexpected journey with pregnancy and birth; where a baby may be born with little planning can be very traumatic. Managing the experience of an early and/or traumatic birth on the unit is understandably difficult to cope with.
Parents may lack basic items or a prepared space for the baby within the home. They are likely to feel high levels of anxiety and there may be uncertain or fluctuating concerns for the baby. This can be made more difficult by the experience of separation from the baby, where parents are a ‘visitor’ to the ward and where parents observe medical staff provide basic care for their baby.
This start to parenthood is very different to most parents’ ideals, hopes and expectations, but may be especially challenging for neurodivergent parents. An unplanned and sudden transition to parenthood can be especially distressing for people who find unpredictability difficult to manage.
Witnessing your baby's treatment or care can trigger distress at a time when our own self-soothing strategies may be difficult to access. This may be magnified as parents may struggle to know how to comfort their baby, or what they should “do”. Parents’ emotional systems are often running in Threat (fight/flight/freeze) mode: responses may be blunted, or conversely working on overdrive.
In the NICU, where emotions are already heightened by fear, hope, exhaustion, and uncertainty, for neurodivergent parents this can lead to intense anxiety, meltdowns, or shutdowns. Parents often find they cannot access or use their usual coping mechanisms in the NICU context.
The pressure to remain calm and composed—often imposed by societal expectations—can exacerbate these feelings, leading to a sense of isolation, and failure. It’s important for neurodivergent parents to recognise that these feelings are valid and that they don’t have to conform to any standard of "coping."
Every parent’s experience in the NICU is unique, and there is no right or wrong way to feel or behave.
Navigating Relationships with Ward Staff
Observing baby’s care by unfamiliar adults may on one level be reassuring, but on another level may be anxiety provoking and result in a sense of failure and incompetence. Neurodivergent parents may have past experiences that have led to similar feelings, which can make this experience all the more intense.
For neurodivergent parents who may struggle with connecting and communicating with new people, and who also may have had past difficult or traumatic experiences of healthcare services or professionals, making and navigating relationships with nursing and medical staff may not be easy.
Recent events and news stories about neonatal care may also provoke intense fear and distrust for parents but also impact parents’ feelings of confidence, competence and influence relationships with ward staff.
Understanding roles and hierarchies, shift patterns and communication styles can be confusing and emotionally draining. Accessing support when it is needed and can be communicated, may not match with the support offered at a particular time. This may also lead to missed opportunities for help and support, which could be beneficial for parents and their developing relationship with their baby.
Building Relationships with Other Parents on the Ward can be Complicated
Making social relationships with other neonatal parents may be harder for neurodivergent parents. Initiating connections, making small talk or having the resources to respond to connections from other parents may not come easy. Parents may worry about how they are perceived by other parents on NICU.
Coping with emotional impact of sensory overload and emotional dysregulation whilst on the ward may impact the ability to respond to social invitations, engage with peers or attend group activities with other parents.
Making social relationships with other neonatal parents may be harder for neurodivergent parents
Although neurodivergent parents may want connections and community with people who share their experience, this may feel too difficult or not possible during their admission, which then may leave them feeling isolated and lonely.
Navigating Communication and Information Overload
The NICU is a place where communication is constant and crucial. Doctors and nurses provide updates, explain procedures, and offer support, often using complex medical terms or jargon. For neurodivergent parents, who may process information differently, this can be particularly challenging.
Some neurodivergent parents may find it difficult to process large amounts of information at once. They might need information repeated, extra time to digest what is being said or prefer written and/or visual communication to verbal explanations. They may also need additional opportunities to discuss important information as they may need time to digest key facts.
This can lead to feelings of anxiety, frustration or upset, especially if they feel they aren’t able to fully grasp the situation, make informed decisions or communicate their wishes when they are invited within the fast-paced environment of the unit.
On the other hand, some neurodivergent parents may have a deep focus on details and an intense drive to engage with medical research on their child’s needs, which can be both a strength and a challenge. While this can help them become well-informed advocates for their child, it can also lead to information overload, causing stress and burnout. It may also lead medical professionals to assume they are coping well or have a full understanding of their child’s needs, when this may not be the case.
Need For Time Alone
Finding moments of quiet and low stimulation can be a luxury where there are few private or quiet spaces on the ward. Balancing the needs to engage with baby care as well as engaging with medical and nursing staff, many neurodivergent people also need time alone to recharge from social, physical and sensory stimulation of the ward experience and to avoid a boom-and-bust cycle.
During neonatal admission, parents may be further challenged when parents are supporting older siblings or holding work responsibilities. This may be particularly important if maternity leave was started at short notice. Juggling multiple demands, an inability to prioritise self-care as well as engaging with the demands of the neonatal admission in the absence of alone and quiet time can exacerbate feelings of exhaustion and burnout.
Difficulties with Uncertainty
As mentioned above, we know that for neurodivergent parents, coping with uncertainty, change, transition and adjusting to different expectations can be emotional triggers in any environment. An early birth or neonatal admission may not have been expected and may be experienced as a source of unparalleled uncertainty and sudden change for neurodivergent parents on the ward. There is often little time to adjust and parents are thrown into a new and confusing environment that they may have heard very little about prior to the birth.
Fluctuations in baby’s health, development and uncertain prognosis can be a constant source of anxiety and emotional dysregulation. High levels of distress may trigger negative intrusive thoughts, obsessive compulsive behaviours, mental health needs or disengagement from the ward and contact with the baby, as ways of seeking to control and cope with the extreme uncertainty and unpredictability.
Difficulties with Organisation and Executive Functioning
Executive functioning— our ability to plan, organise, and complete tasks—can be particularly challenging for parents following a traumatic birth and juggling multiple demands and information linked to an admission. This experience can be particularly challenging when compared with other neurodivergent traits.
From keeping track of meetings with professionals, engaging with important medical information, decision making and coping with baby’s care needs, the demands can easily be overwhelming. This may be additionally difficult if that parent is also juggling additional care or parenting needs or even just trying to manage the day to day demands of everyday life. Digesting pregnancy related information, reading resources, remembering key information or getting through a ‘to-do’ list can be frustrating, a gateway to self-criticism and a negative cycle of complicated emotions and overwhelm.
Navigating the Unit Experiences with a Previous History of Trauma
For neurodivergent parents with a history of trauma or complex experiences, a neonatal admission can trigger difficult memories, fears and reactions. This may be linked to medical settings, or previous experiences of where there was a sense of helplessness, lack of control and vulnerability. A traumatic birth may trigger these reactions, and a subsequent neonatal admission can heighten and intensify these feelings and reactions which can impact well-being, mental health and a parents’ ability to engage with medical staff and support their baby during the admission.
The uncertainty linked to baby’s care and prognosis, compounded by sensory needs and emotional dysregulation difficulties can further complicate this experience, impacting mental health whilst on the ward and after discharge. Without formal emotional support, adjustment, wellbeing and transition to early parenting at home may be more challenging. It may also be that family relationships and dynamics in the early years could be difficult to navigate.
So… What Helps?
Communicating own needs and wishes for baby's care
One of the most empowering steps neurodivergent parents can take in the NICU is to advocate for their needs as well as those of their child. This might mean asking for accommodations that make the environment more manageable.
However, given the other challenges of sensory overwhelm and emotional needs it’s also important for neonatal staff to take the lead for neurodivergent parents. Asking about personal preferences which increase comfort, understanding and minimise distress can be incredibly helpful.
One of the most empowering steps neurodivergent parents can take in the NICU is to advocate for their needs as well as those of their child
Some suggestions could include…
Using noise-cancelling headphones or earplugs to reduce the impact of constant noise, beeping and hum of the unit.
Dimmed lighting or using sunglasses to reduce sensory overload.
Ice packs or soft blankets to help regulate your temperature can be helpful when feeling overstimulated.
Soothing sensory items such as soothing smells and fiddle toys can help.
Clear direct language - information may need to be repeated with pauses and without jargon. Short questions to clarify understanding may also be helpful.
Written summaries of medical updates or instructions, which can be easier to process and refer to later.
Additional time - to process information and respond to difficult decisions.
Regular breaks from the neonatal unit to decompress, even if just for a few minutes, to avoid sensory and emotional overwhelm.
Being aware of and prioritising your needs such as clean clothes, time to shower, and tending to post-birth physical recovery.
Planned and gradual approach to parenting tasks than a ‘one and done’ expectation. Parenting tasks such as feeding or nappy changing may activate sensory overwhelm and may take additional adjustment for neurodivergent parents.
Planning time and space for stimming that can both soothe overwhelm and avoid boredom within a repetitive routine.
Lowering the bar of all expectations other than doing your best to meet your own needs and those of your baby.
Embracing Strengths
Despite the challenges, neurodivergent parents bring unique strengths to a neonatal experience. Attention to detail, deep empathy, learning about neonatal conditions and fierce advocacy for their child can be powerful assets in this environment. By recognising and embracing these strengths, neurodivergent parents can not only survive the NICU but also thrive in their role as their child’s most important advocate and protector.
Attention to detail, deep empathy, learning about neonatal conditions and fierce advocacy for their child can be powerful assets in this environment
Finding Support and Community
Connecting with other neurodivergent parents who have been through the neonatal unit can provide immense comfort and validation. There are neurodivergent parent online communities and support groups where parents share their experiences, offer advice, and provide emotional support to one another. Other NICU-specific communities are listed at the bottom of this page. Knowing that you are not alone in your struggles can be incredibly reassuring.
Knowing that you are not alone in your struggles can be incredibly reassuring.
Psychological professionals familiar with the neonatal experience and/or who specialise in working with neurodivergent parents can offer tailored support during this time. They can help develop coping strategies, provide a safe space to process emotions, and assist in navigating the challenges of the neonatal unit.
We know a neonatal journey and experience is never easy, but for neurodivergent parents, it is an additional challenge to an already difficult experience. By recognising and addressing the unique difficulties neurodivergent parents face, recognising and advocating for needs, as well as facilitating support, neurodivergent parents can navigate this difficult time with respect, compassion and strong foundation for the next step of their journey.
Where can I find further information and support?
Community Support
If you are a neurodivergent parent or a parent with neurodivergent traits, know that your feelings and experiences are valid. Your needs are important and you are not alone. Connect with other parents who understand the journey. The Neurodivergent Parent Space is for you!
The Neurodivergent Parent Space is a welcoming online community, where you can find understanding and connect with your tribe, as well as monthly webinars, resources and support around neurodivergent parenting, whatever the stage.
Individual Support
If you feel you would like to reflect more about your experience in the neonatal unit, our co-founder Dr Jo is available to offer emotional support, explore the journey, what this means for you, your family and your parenting.
Professional Development
If you work in neonatal, maternity, perinatal services or Under 5s services and are interested in learning more, The Neurodiversity Practice offers specialist training, consultation and support for clinicians keen to develop their knowledge and skills.
We have a special interest and experience working with neonatal, perinatal issues and early parenting, alongside our long history of working with neurodivergent families and their networks. Get in touch! We would love to partner with you.
