A shocking story appeared in the news this week of a teenage girl who died after she didn’t have a bowel movement for eight weeks.

An inquest into her death heard that Emily Titterington, who had mild autism, had a phobia of going to the toilet and had been known to refrain from passing stools for up to two months – a condition known as stool withholding.

Emily’s bowel had grown so large from the withheld faeces that it compressed her chest cavity and caused the displacement of other organs.

Emily collapsed at her home in St Austell, Cornwall on February 8, 2013. The cause of her death was cardiac arrest brought on by the massive extension of the large bowel.

At the inquest, Emily’s GP, Dr Alistair James, said that had he been able to medically examine her he could have prescribed treatment that may have saved her life.

Dr James said that he had prescribed laxatives but had not examined Emily’s abdomen as she refused to undergo a medical examination.

Dr James said: "Had I done so, we would be having a different conversation. Her death could have been avoided with the right treatment at the right point.” It was not clear from media reports of the inquest what treatment Dr James would have prescribed had he been able to carry out a physical examination.

According to the National Autistic Society's (NAS) briefing 'GPs on Autism', GPs and other medical professionals often dismiss severe constipation and chronic bowel disorders in children with autism as untreatable.

NAS explains that because children with autism may have altered sensitivity to stimuli such as pain, smell, noise, touch or bright lights, physical examinations can be difficult. NAS says that GPs should use factual language, avoid abstract terms and support verbal information with visual information when working with patients on the autism spectrum.

Commenting on continence challenges, Autism Training Consultant for NAS, Lorraine MacAlister, said: "The issue of constipation and withholding has come up frequently on the autism and toileting courses we run for parents and professionals at the National Autistic Society.

"Discussions have shown how common this behaviour is in children on the autism spectrum, but how it is frequently not recognised, or its true impact understood.

Children on the autism spectrum will often experience high levels of anxiety about many things, including using toilets, so it is vitally important to take these anxieties seriously. Using a combination of social stories and visual information to explain to children what is happening if they need to be examined can be vital. - Lorraine MacAlister, National Autistic Society 


"Adjustments such as practice visits to the doctor, explaining how long things will last, altering the environment that it takes place in and letting the child have something familiar to hold during examination may help.

"It is vital to be aware of both sensory sensitivities that may mean children find some touch highly distressing and also the fears that some children have with relating to unfamiliar people. Establishing a connection with a child through finding a shared interest may take up a bit of time at the beginning of an appointment, but could lead to success with the appointment.”

Read this article for tips on how to get children with autism to use the toilet.