In my new role as a freelance feature writer for Autism in Practice, an e-newsletter that is put together by The National Autistic Society for professionals who work to support people with autism in Great Britain, I wanted to share the first feature I’ve put together with you all that was written on a possible link between autism and gastrointestinal issues. There is growing awareness of a potential link and through the examples I’ve used in the feature, I hope I show this.
Danny Bovell, 20, and Nicky Monks, 15, have both experienced issues with their gastrointestinal systems that have resulted in the need to wear a stoma bag for the foreseeable future after ileostomy surgery. They both also have autism.
Virginia Bovell, Danny’s mother, delivered a session at the NAS Professionals Conference 2014 in Harrogate on the possibility of an overlap between autism and gastrointestinal issues alongside Professor Simon Murch, Professor of Paediatrics and Child Health at Warwick Medical School.
The Co-Morbidity Burden of Children and Young Adults with Autism Spectrum Disorders, a report that was produced following a project in three general hospitals and one paediatric hospital in the United States, reveals 12.97% of all adults tested developed common bowel disorders while living with Autism Spectrum Disorder. A further 1.99% developed Inflammatory Bowel Disease.
Albeit low, the chance of a link between autism and gastrointestinal issues isn’t isolated. Research Autism, a UK charity undertaking research into autism interventions, indicates on its website: “It is difficult to know how many people with autism suffer from GI problems because the evidence is so mixed and confusing. A study by Erikson and others (2005), which reviewed more than 70 other studies, stated that the actual rate could be anything between 17% and 86%.”
On Danny’s issues in early life, Virginia says: “By the time he was five, I felt he seemed to cry a lot and be in what seemed like pain before he did a poo.
“Sometimes, afterwards, he would be really happy because it would seem like the pain had gone.”
Danny, who lives with a non-verbal form of autism, struggled to move food through his intestines. At seven-years-old, after a series of tests, an abnormality was found and he was eventually fitted with a stoma bag.
Currently his pain is managed by a controlled diet and a combination of antibiotics and probiotics.
He will need support, but as he develops further, Virginia believes he could become more independent. She says: “He may learn to do some of the fiddlier personal care other people are (currently) doing for him. But at the moment, we are still at the stage of teaching him to wash his hands!
“Because he’s a slow learner, everything takes a long time but I would never want to write off his chances of doing things himself. If he wanted to, I would try and help him do that.”
After growing up a fussy eater, Nicky was diagnosed with autism aged three. A further diagnosis of Crohn’s Disease followed at nine-years-old and this created a new label for Nicky away from autism. In Oli’s opinion, it was something he welcomed.
Before Nicky’s ileostomy surgery was carried out, numerous options were looked at in a bid to ease his Crohn’s problems. Some treatments that Nicky tried included being tube fed minerals, a range of expensive alternative procedures and the use of steroids.
Oli believes having autism has helped Nicky cope in some situations, including hospital visits. He says: “Autism is a blessing. It protected him from the nuances of the situation.
“He picked up errors and kept his consultants and nurses on their toes in hospital! He was a character and he was respected. He copes with Bill, his stoma, because he knows it’s more positive than bad. When he goes to the toilet, he empties his pouch. Mum and Dad are helping him to become independent so in a way, his Crohn’s (also) helps him with his autism.”
Though Virginia and Oli are aware of what lies ahead in the future for Danny and Nicky, they are both confident they will adjust to their new lives. They believe an opportunity to learn about the effect autism has on them both will be handled with strength and maturity.