What happens when your adult child ​needs hospitalisation?

Sep 20, 2021reThinking Autism blog

Please find our most recent blog, this one from the parent of a young adult with autism. If you happen to have any further suggestions or resources to help out families who find themselves in this situation, please send them to us. 

My son Ben, aged 21, was recently admitted to hospital twice over a two week period for a total of ten days. He was in pain and had a fever; neither of which responded to the treatments initially given to him and he was eventually diagnosed with a rare auto immune disease.

During his time in hospital he had daily blood draws; scans; x-rays; a skin biopsy; IV fluids, pain relief and antibiotics and many tablets to swallow. The care he received was great and once his diagnosis was established, his treatment and follow-up care was fast.

It would have been difficult for anyone to be admitted to hospital with a mystery illness, but Ben has autism and developmental delay and his hospital stay was extremely traumatic for him. What made things slightly easier was that I was able to stay with him, which meant that I could access the nursing staff when needed and explain his needs. I was able to keep him calm and to help him understand what was happening, hold his hand during blood tests and procedures, encourage him to eat and drink and to look after his toileting and personal hygiene.

Although Ben is verbal, he can be hard to understand and even more so when he’s frightened or in pain; I spent much of my time giving his history and explaining how he was feeling to medics, while also keeping him calm and helping him to understand what was happening.

What would have happened if he’d been alone? I feel certain that without me there, the trauma would have substantially increased and it seems very likely that the diagnosis would have taken longer.

I was fortunate in that I was able to drop everything and be with him; I have a very understanding employer and nobody else is dependent on me. I was clear from the moment we arrived in A&E that I was going to stay with Ben and the hospital accommodated me (I slept in a reclining chair), but I wonder if all hospitals are as accommodating or whether people are aware that they are able to stay with their adult children?

According to the NHS website: ‘It may be possible for carers to stay in hospital overnight with the person they care for’.


The Equality Act and The Disability Discrimination Act both state that reasonable adjustments need to be made for people with disabilities when they stay in hospital. We know that people with learning disabilities don’t always get their basic health and care needs met (particularly during the COVID pandemic) so it’s vital that we advocate for them. Parents and carers need to have a good understanding of the rights afforded them in these two Acts in order to ensure that their adult children get the best care possible in hospital. Here are two links which explain reasonable adjustments to medical staff:



Our hospital trust has a Learning Disabilities Co-Ordinator and a Learning Disabilities Liaison Nurse along with a Safeguarding Adults team — none of whom I met, as presumably the ward staff realised that I had everything covered, but the support is available.

You can also fill in a Health Passport for your child with their needs. They can be downloaded from here:


Ben’s stay in hospital was an emergency; it wasn’t as a result of a long-term condition or for a necessary procedure, which may be easier to manage with forward planning and support from the hospital.

I was completely unprepared for what an emergency hospital stay would mean for my son. I am making sure that his records have his disabilities noted and I am filling in a Health Passport for him in case he is admitted to hospital again. I hope we won’t have to use it. I hope none of you reading this will find your family in these circumstances; however, should that happen I hope this information may help you feel prepared.

If you happen to have any further suggestions or resources to help out families who find themselves in this situation, please send them to us at mail (at) thinkingautism.org.uk
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