Guest Blog: Health, Hospitals and the Neurodivergent Child: A Parent’s Perspective

Bright lights. Unfamiliar smells. Different foods. Noises that never ever stop. And people, many, many people - all day, and all night, asking questions, demanding things, entering your space with endless requests. Hospitals are the least friendly place for the neurodivergent child, and yet every day, they are expected to cope in an environment which challenges even the steadiest neurotypical person.

When my child became critically ill, their ND diagnoses took a back seat, as it just didn’t seem relevant when they were fighting for their life in intensive care. Suddenly, all that mattered was minute to minute, hour to hour,  and we had very little input into what was the worst possible healthcare situation to find ourselves in. The way my child processed things, their sensory sensitivities, the things they found difficult when well, did not even enter my mind in the early days of critical care.

Intensive care units are brutal and relentless, but it never occurred to me that things would be more of a challenge because my child was neurodivergent. We were purely focused on their physical decline into critical illness, and it was only a few days into their stay did I even think to tell the medical team that they were neurodivergent. Why would I? What did it matter and what difference would it make?

Later on, a few months down the line, I realised that this was the first error. It did make a lot of difference in reality and I questioned myself on why I never thought it important at the start.

About a week into their ICU stay, agitated by the many drugs and treatments, my child would not settle or sleep. The thin hospital blankets, and unfamiliar pillows - nothing designed for comfort or regulation.

On the nightshift, a thoughtful nurse attempts to settle them by folding the thin hospital blankets into heavy squares, and placing several of these weights over my child. When I turn up in the morning, my child is hugging one, fast asleep and weighted down by the others. ‘I thought this might work’, she tells me, ‘after noticing ADHD on their notes’.

It was at this moment that I realised hospitals and healthcare were going to be different experiences for those ND individuals who suddenly find themselves there. So, we bring in a pillow, a blanket, some teddies, and familiar music from home. We brush my child’s hair for hours and hours, something which provides sensory comfort in ‘normal’ life.

There’s not much you can change about the process of critical care, but as your child is likely to be sedated or unconscious, you are the only person who can advocate for them. The first rule, which I now know is - make it clear of any ND diagnosis from the start.

Being an inpatient, or even a regular outpatient, if you are ND is very challenging. When my previously healthy child left ICU and entered a ward for what was to be a six week stay in a solitary room, what unfolded was a crash course in these challenges.

Things which a neurotypical child could perhaps cope with, despite the awfulness of ward life, became insurmountable to my child. I’ll caveat this by saying - my child has low support needs when healthy. High masking. High verbal skills, but low processing speed, poor working memory and auditory processing. But, able to get on in the neurotypical world generally quite well. I don’t have direct experience of parenting a child with higher support needs, but can only imagine that it will be even more intense in terms of healthcare challenges.

This hospital stay turned into the worst possible nightmare for my child. As the weeks rolled on, their mental decline deepened and physical recovery elongated, and neurodivergence played a significant part in that.

Here are my memories and reflections from that time:

My child was bed bound for almost six weeks. They developed chronic neuropathy in their feet. Their response to this was out of control - a week screaming in pain. Medications were tried, tests carried out, doctors scratched their heads.

 A thoughtful physio suggests that perhaps my child is responding to pain differently because of their processing. She herself has a child with ADHD and has met many others in her job. These children absolutely feel and process pain differently.

This information, which is new to me, relieves some of the questions. It is not a cure, but an understanding, and helps later when my child has other procedures to insert medical devices which ‘usually do not bother other people’. My child DOES feel things differently. Why would I even question this, when labels, socks, seams, wool, nylon, anything scratchy, drive my child insane in healthy life? Pain and the ND brain becomes a whole new thing.

My child occasionally stims when healthy - the odd leg bouncing, eyelash pulling. But as her physical health hangs on a tightrope, new and distressing stims occur. Masking is no longer possible, and is an indicator of overload and stress. One stim is particularly distressing for me to watch. However, it is the one thing she can control and gives relief. Masking when physically ill may no longer be possible. Your child may regress, and that is probably to be expected in this environment.

My child, usually polite and engaging with adults, begins a slow decline into aggression, rudeness and disengagement. The constant obs, cleaners, housekeepers, staff, dieticians, entering her room on a revolving basis begins to drive her mad. There is simply no ‘reset’ or ‘down time’ and her brain is failing to cope, and ‘fight’ mode has been activated. She is unable to have quiet time anywhere at all.The ward rounds are particularly draining and intense - multiple doctors, all staring at her, explaining things, and asking questions. Each day different faces, different approaches. In her weakened physical state, and different way of processing, it is just too much.

By week six, my child has reached peak fight mode. It is only at this point that I become aware of hospital passports and a learning disability team.Why was I not made aware of this before? My own internal views of my child have not helped - usually very capable, only struggling in certain areas, but now very, very obviously not neurotypical. By week seven, a safeguarding issue is raised about their thoughts of harm towards staff and themselves, their poor mental health. Looking back now, it is so, so obvious how my child reached this point. Things could’ve been put in place to stop this happening, so we did the best we could once we knew.

Practical things which helped my child:

1. A hospital passport outlining my child’s needs. [See below for a downloadable template from NHS England]

2. A sign on the door prohibiting unnecessary visitors.

3. Ward rounds being limited to one doctor only, with parents talking to others outside the room.

4. Our own bedding and blankets - heavier, more comforting, familiar textures and smells.

5. Turning off the main room lights when possible. Nobody wants to spend 24/7 under fluorescent lighting.

6. Sticking to some kind of routine, however small. Daily showers become a source of great comfort to my child, and meet one sensory need.

NHS England Health Care Passport Template.docx

Download DOCX • 108KB

Leaving the hospital in week eight, and returning to the safety of home, but still requiring twice weekly visits, we were more clued up and yet I still found myself forever explaining or challenging perceptions of ND and healthcare.

My child, now stable, makes a decision about ongoing treatment which I know they will find difficult on a day to day basis due to their poor working memory. I stay quiet, wanting to support my child’s choices, but angry that the medical team does not at any point seem to take into account my child’s other needs. As an outpatient, suddenly their ND status does not really seem to matter as they now seem as ‘more well’ and able to cope. They attend outpatient appointments, with me present, and come across as engaged, bright, articulate, funny. It is only when we get home that the meltdowns occur, and their overwhelm at having to remember things, make decisions and deal with multiple professionals in one day.

My child has another procedure and explains to staff about their discomfort and pain levels. Staff initially respond with ‘you’re the first person to say that’, suggesting a level of disbelief and belittling my child’s lived experiences. As time goes on, the same things keep cropping up - my child’s sensitivities to procedures, medicines and devices - not shocking, given my new understanding that the ND brain processes sensory input, pain and discomfort differently. Over time, the medical team validates them by saying ‘we know you are more sensitive than some people to this’. I can only imagine how challenging these things would be with a non verbal or verbally challenged child who cannot express their pain levels, or a child with alexyhima who can’t recognise how they feel.

There are now some good practices about inclusivity and ND. On a positive note, we have hospital passports, learning disability teams, reasonable adjustments, and posters up celebrating ND and where possible, adaptations. I was delighted to see a friend's little boy, who is autistic with global delay, recently have reasonable adjustments to his hospital room for a two day stay - lights off, and a lovely sensory light display in the corner. And our local hospital has just started trialling a pager system, which allows children and parents to leave busy waiting rooms and wait wherever they feel safe, until their appointment is called.

 But we still have to advocate around:

●       Internalised ableism - telling my child, or your child, that they are just too sensitive, or don’t feel that amount of pain or aren’t able to deal with XYZ, or, as in my child’s case, overestimating what my child could cope with. This still happens, and I still feel like I'm pointing it out most weeks.

●       Reasonable adjustments - you have the right to ask for reasonable adjustments, and to question how things are done. What I know now compared to what I knew at the start - I know the learning disability team, I am ready to ask for reasonable adjustments for my child, I will shout from the rooftops that yes my child has a physical health condition but they are also ND which impacts on their health.

Hospitals are places to ‘get well’ and maintain that health, but failing to support and acknowledge our children’s ND’s challenges and needs means longer stay times and less positive overall health outcomes and of course, more money spent. Small adjustments may have massive positive longer term health and financial outcomes. Learning disability teams and advocates for our children are important, as are parents who can advocate, but longer term can we turn hospitals into places which are more ND supporting? Perhaps, perhaps not, with already very stretched resources and staff.

I’d like to see specialists and consultants look at the whole child, ND and physical health conditions, and understand how these relate to one another. I don’t know what training there is currently for professionals, but I’d like to see ND young people and adults talk to teams about how their processing and differences can affect their access to healthcare, their inpatient stays and outpatient care, and their overall long term health outcomes. What I tend to see is sympathetic nodding when I remind medical staff that yes, my child has a serious health condition, and yes, my child is also neurodivergent which is another layer to their life. We don’t need sympathetic nodding, but practical understanding of what this means for that child now and longer term.

If you ever find your child needing hospital care, please remember -

●       Ask for a hospital passport and complete it straight away. [See above for donloadable template]

●       Request reasonable adjustments and make sure they are implemented - liaise with the learning disability team if there is one.

●       Engage with the play team - they can help with distractions, fidget toys and sensory based activities.

●       Speak up about your child’s additional needs and keep speaking until you’re heard.

●       Know that PALS can be contacted if you need support with any of the above.

A huge thank you to our guest blogger for sharing their insights, experience and top tips for navigating a hospital stay. If you are interested in writing something to share on our blog please get in touch here: info@neuroconnect.org.uk