Characteristically, a person diagnosed with autism has fixed routines in their everyday life. Any change to this routine can be very distressing, which can mean staying over in a hospital will result in panic attacks or even meltdowns.
The strange environment on top of an illness can be extremely difficult for the autistic brain to manage. These challenges can result in people with autism having to be discharged too early in an attempt to combat the negative impact of unfamiliar surroundings.
A person diagnosed with autism will often have an impaired ability to communicate well, to answer questions, and often relay how they are truly feeling. Heightened points of anxiety like going for general anesthetic needed before operations or painful testing like a lumber punch can become hugely traumatic.
A person with autism may have over- or under-sensitivity to pain, making diagnoses and some treatments more difficult, and sometimes prolonging the process.
In April 2017, Ruth Gregory, who is diagnosed with autism and severe anxiety, collapsed unconscious following a brain seizure. Ruth is also diagnosed with a rare form of mast cell activation syndrome that leaves her in a lot of pain and in need of regular hospital care. For many years Ruth has dreaded having to stay in hospitals. It is her worst fear far beyond her pain.
In the past, hospital stays have rendered Ruth mute with anxiety, unable to eat, fed by drip, and unable to sleep. Staying in hospitals has had such a serious adverse effect on Ruth that her OBS and mental health were often far worse following the whole experience. As such, early discharge has been necessary and some treatment left incomplete. On one such extended hospital stay her mother feared for Ruth’s life.
Ruth writes, “One of the major difficulties is how unpredictable hospital admissions are. It’s a complete break from routine and the patient usually isn’t told when they will be discharged or what will happen to them. I’ve spent days waiting for doctors to arrive when they have promised that they ‘will see me at some point today,’ only to find that they never come. This makes it really difficult for me to trust what the hospital staff tell me.”
She went on to say, “I find it almost impossible to give pain a score out of 10 because all pains are different and the number doesn’t really mean anything, it’s all such an abstract concept and I worry that I will say the wrong thing. The other thing is that when I was in the Emergency department, there was no option to dim the lighting, even when I was admitted with breathing difficulties last year and was still being monitored by the nurses’ station at 2 a.m.!
I really struggle when I’m on a ward and have been extremely anxious and had severe meltdowns during previous admissions. It’s all left me feeling quite traumatized.”
Pioneering hospitals in the UK are now starting to explore methods to help people with autism, their families, and hospital staff to cope and communicate better during their stays. One method is to allow the presence of an assistance dog to join the patient throughout their stay and remain with him/her at all times. The assistance dog provides critical emotional support, reducing anxiety and therefore increasing the opportunity for longer stays and the improved administration of the required treatments.
Derriford Hospital in Plymouth, England, is one such hospital that has allowed a trained assistance dog to join his autistic owner Ruth Gregory during her stay—with amazing results!
When Ruth collapsed she hit her head badly and suffered a head injury that required urgent investigation. Ruth was taken to the hospital by ambulance and underwent a very painful lumber punch, a CT scan, and an MRI scan. Usually the accident would have been the least of her concerns. Previously Ruth would have found the extensive tests and her stay in hospital unbearable.
Now Ruth has a loving and loyal assistance dog, Ryder. He is by her side constantly, and due to the kindness and understanding of the hospital in Plymouth, Ryder was allowed to travel in the ambulance with her following her fall, sleep with her in her bed, and accompany her throughout all her traumatic tests.
Ruth writes about the help Ryder provided for her during her stay in hospital: “Ryder’s routine remains constant; he still eats, sleeps, etc., which helps me to do the same. The hospital was more inclined to prioritize my treatment and discharge as they recognized that the hospital environment is not ideal for a dog to stay in long-term. Ryder is familiar and I know that I can trust him and trust that he won’t leave me. I found nurses and doctors were much more accommodating with Ryder there.
They also asked whether Ryder would be more comfortable in a side room or on the ward. We’ve always had to push them to put me in a side room before but it was easy this time.
Ryder provided Deep Pressure Therapy which helped me so much. He also slept next to me/on top of me on the bed as he would do at home which helped me feel calmer. He also sat on my lap in the ambulance too! We had been to the hospital with him before so he was really comfortable with it. I would suggest that anyone else with an assistance dog should take the dog in to a doctor’s surgery or another similar environment prior to any emergency admission so that the dog is comfortable in the setting.”
With the help of her assistance dog and for the FIRST TIME in her life Ruth was able to cope and communicate herself with the staff during her stay. The importance of Ryder being with her during the entire episode was beyond measure.
Caroline Preston is the managing director at Therapy Animals, and Ruth Gregory is the owner of therapy dog Ryder. Ruth is a 21-year-old young woman diagnosed with autism currently living in Plymouth, Devon, in the UK. Ryder is a Labrador/Springer first-generation hybrid who was bred and specialist-trained for Ruth by Andrew Preston, co-owner of Therapy Animals Ltd and founder of Steady Paws in the UK.
This article was featured in Issue 66 – Finding Calm and Balance