Autism in Resus- Making things easier for autistic children in hospital
I recently led a difficult resuscitation scenario in which a very sick, but extremely upset teenager with autism presented to the department. He was significantly hypoxic but unable to understand or tolerate oxygen therapy. Despite our best efforts, we had no choice but to intubate and ventilate him, essentially due to our failure to communicate.
This is obviously an extreme example but it got me thinking about how to provide optimum care and enhance understanding when children with autism present to hospital with illness. Autism is a lifelong developmental disorder characterised by impairments in social communication, social interaction and social imagination.
Throw into this repetitive or ritualistic behaviours and sensory issues (both hypo and hypersensitivity) and rush a child to an unfamiliar, often busy and noisy environment, it’s not a surprise that anxiety levels often hit crunch point!
Sadly, it is often the case that healthcare workers have not had training in autism and may feel rather helpless, unsure how to make the whole experience less distressing for the child at the centre of it. Defects in social imagination make it difficult for these children to imagine what will happen next when placed in an unfamiliar situation and when communication deficits are severe, you may as well be talking in a foreign language. Childrens outpatient departments are chaotic places with small children and toys strewn everywhere. Appointments commonly run late and the whole experience can be a sensory nightmare!
So what can we do to make things easier? The National Autistic Society website suggests considering giving children with ASD the first or last appointment of the day and finding a small side room for them to sit in if they should require. They also have a downloadable ‘hospital passport’ that these children can complete and carry with them when attending hospital to allow others to better understand their communication needs. In general, it’s important to choose your language carefully when communicating with children with autism. To aid understanding, use clear simple language and give direct instructions. Avoid confusing metaphors and sarcasm at all costs.
Examination and procedures may prove very stressful to some children and you should explain what you are doing and why prior to touching them. Sometimes a picture can be better than a thousand incomprehensible words and it may be worth planning that blood test several weeks in advance so that parents can best prepare their child. There are hundreds of visual communication aids available to help. I particularly liked the ‘Going to the doctors symbol fan” from theplaydoctors.co.uk website. There is also a ‘Show Me Where’ app for android or IPAD.
Children with autism may be hyper-or-hyposensitive to pain and it is important to assume the former and ensure adequate analgesia pre-procedure. However it is also worth noting that just because they are smiling, doesn’t mean that arm isn’t broken!
The bustling emergency department can be completely overwhelming for patients with ASD and anxiety and overstimulation may lead to either complete withdrawal or outbursts of difficult behaviour. Allow parents to take control if possible, even in resuscitation scenarios, as they will know how to best communicate with their child and how to help them stay calm. Another important tip is to try and limit the number of staff caring for the patient to encourage predictability and help them to understand each individual’s role.
The most important thing to remember is that once you’ve met one person with autism, you’ve met one person with autism. Let parents be your guide as every child is different and seek support from others such as play specialists if you’re struggling.