Ending inequalities in end of life care: understanding the spectrum of autism

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It is estimated that around one in 100 children receive a diagnosis of autism in the UK.  Research shows that getting a diagnosis in the first place isn’t easy, which means autism is far more prevalent than many people think. It is also frequently misunderstood.

Dawn Stirk, the Bereavement Service Administrator at Rowans Hospice in Hampshire, started searching for training resources after staff said they wanted to learn how to manage the behaviours of people with more severe cases of autism who were visitors to the hospice.

This meant understanding the environmental factors that some people on the autism spectrum can be sensitive to, such as noises, and other causes of over-stimulation. This was important, because Stirk explains that “if you haven’t had any background knowledge of autism, it can be quite frightening to see someone go into a meltdown.”

Understanding autism

She soon found that the vast majority of information available concerns children rather than adults, so she decided to create a training resource herself. While its starting point was people visiting the hospice, it naturally led onto how to provide better end of life care to people who are on the autism spectrum.

“There are many physical aspects of having autism, like sensitivities to eyesight, sense of smell, hearing and touch” she explains. “Some people can have both extremes, for example the weights of a bed sheet can be so painful to someone that they scream in pain, but the same person could have a broken bone and wouldn’t really register it. We can’t assume that if someone is in pain they will tell us.

“Also some people can react to pain in a different way to non-autistic people. So rather than cry out they may laugh or sing, and therefore the pain can go undiagnosed.”

The hospice environment

Stirk says that finding out about physical sensitivity was really enlightening, as well as learning about what can cause sensory overload. “I thought about what you encounter when you walk into our hospice” she says.  “You go through reception where there are payments going, there are lots of screens, then there’s the hand gel which someone may not like the feel of on their hand, or may be really sensitive to the smell. You have to think about where in the place you work, whether it’s an office or an inpatient unit, how many things would add to a sensory overload.

“In a hospice especially there are lots of noises and smells. If we can make the patient or visitor aware of these things, and work with their carers, they won’t be a shock to them. Obviously if it’s an emergency admittance that’s difficult, but wherever possible we can plan.”

Communication is extremely important, she says. “We have to be very careful about the way we word things to avoid ambiguity, especially when we’re talking to someone about end of life, as we tend to be quite gentle and not be too direct. With a person with autism, they are taking what we say very literally, which means they might misread what we’re saying.”

The importance of listening

Equally vital is listening. Stirk describes a situation she encountered in a bank, where someone with autism had gone in to report a lost bank card. “He started telling the bank clerk what had happened, but the procedure is to call an automated phone line from within the branch and leave a message. On the phone he thought he was talking to real person.

“Unfortunately the other issue was that he was homeless and living in a hostel. He tried explaining this, and asked for someone to call his hostel but people were not listening to him.  Eventually everybody in the bank was backing away from him thinking he was getting very angry, but actually he was just getting frustrated because no one was listening to what he was saying. Thankfully a bystander realised what was happening, and got him to sit down and explain what was happening.

“It was a good example of how we can let something like that escalate, simply because we aren’t listening to the words they use. In this case, he had told us everything that we needed to know to avoid that whole escalation.”

Stirk says that putting together and sharing this resource has been a big eye-opener for her and for the hospice staff. “Once you start looking at autism, it’s actually fairly easy to understand because we can recognise these patterns in ourselves, just to a lesser degree.

“Also the spectrum of autism is not a straight line – someone could have been absolutely brilliant at higher mathematics when they were six, but can’t cross the road, because that’s a different part of their brain. Because someone isn’t capable in one area, doesn’t mean they’re incapable in all areas, and vice versa. Now that we have this knowledge, we can deal with different situations we might encounter with people with autism, including at the end of life.”

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