Most nurses at some point will look after someone diagnosed with autism.
People with autism will present in the community and hospital with a range of physical health needs but a procedure as simple as taking blood pressure may cause them considerable distress.
This can mean that they miss essential screening that can lead to long-term health problems and poor outcomes. Research has shown that people with autism have a reduced life expectancy of 12 years and this increases to 30 years for those with a co-occurring learning disability.
It is crucial that specialist autism nurses work jointly with other professionals to raise awareness of autism and ensure that reasonable adjustments are made to enable people to access the healthcare they need.
Cathy’s story is an example of how sharing knowledge and expertise can enable people with autism to access services.
Cathy is a 25-year-old lady who was diagnosed with autism spectrum disorder. She received a letter from her GP practice to attend her first routine smear test and this made her very anxious.
Cathy always became anxious when she received letters about her health but she attended the surgery with her mother. During the appointment she decided that she did not want to go ahead with the test and she left the surgery in tears saying “If you don’t have a smear test you will get cancer!”
Cathy had misheard what the nurse had said, yet these words had a massive impact upon her. She repetitively researched the topic, constantly ruminating and discussing it which caused stress within her family. She refused to engage with the GP practice.
The impact on her mental and physical wellbeing was profound as she could not eat, she lost weight and her sleep deteriorated. Her obsessional behaviours escalated, which resulted in her being physically and mentally exhausted.
I met with Cathy and identified that she was concerned about the test, the clinical equipment that she had seen online and that she would get cancer and die.
My first task was to contact the practice nurse and she agreed that she would support Cathy if she decided to go back to the surgery. We discussed the impact of autism on Cathy’s life and the adjustments she needed. These included having double and quiet appointments, seeing the same staff member, providing clear information and no waiting time.
Cathy also liked to bring written notes with her and I suggested that it might be useful if Cathy could touch and handle the equipment. The practice nurse agreed to do whatever possible to make Cathy feel comfortable.
Over the course of several home visits, Cathy and I discussed the purpose of cervical smears and the procedure using pictures. She agreed to go back to see the nurse she knew best.
I arranged a double appointment in the evening when the surgery was quiet and we agreed that she would write a list of questions to give the nurse, rather than have a lengthy discussion.
On the day of the smear test, Cathy was able to walk round to the surgery completing her outdoor rituals which relaxed her. We used videos of both our pet dogs to help ease her anxieties and she did not have to wait in the surgery. The clinic room was uncluttered and tidy, she was offered a drink and a biscuit while chatting to the nurse she was familiar with.
The nurse answered all of Cathy’s written questions. She slowly and clearly explained the procedure and how an individual’s risk of cancer is very low. Her GP came into the room to offer support and reiterated this information and she accepted this. She was able to touch and hold the clinical equipment before the procedure.
All went well and afterwards the nurse informed Cathy that she would be telephoned when the next test was due. She is aware she can say “yes” or ”no” without any repercussion.
The surgery is now trying to offer and accommodate reasonable adjustments to other patients.
Jo Nixon-Mills is a senior autism nurse practitioner (RNLD)