Children with autism often suffer from toilet phobia

This week a shocking story emerged of a teenage girl who died after not having a bowel movement for eight weeks. 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. She died of heart failure.

Here we discuss why Emily didn’t go to the toilet for such a long time and what could have been done to prevent her death.

Painful pooing

Emily may have had a painful pooing experience that she was afraid of repeating, possibly as a result of constipation or because she had a sore or anal fissure that made pooing hurt. In order not to repeat the experience, she may have held in her stools. This behaviour is known as ‘stool withholding’.

Stool withholding is when a child feels the need to use the toilet but resists it. Resisting the need might involve crossing the legs, sitting on the back of the heels, clenching the buttocks and being fidgety. The stool gets bigger the longer the child holds on to it and eventually when they absolutely have to go it is very painful and difficult to pass. This can lead to a vicious cycle of holding on and pain.

Sophia Ferguson, author of ‘Stool Withholding: what to do when your child won’t poo’, explains in more detail what stool withholding is and how it can be treated in her story of getting her son Max to poo. Read Sophia's blog here.

To treat stool withholding, the child’s blocked bowel must first be cleared out. This is done by way of laxative treatment. Find out more about using laxatives to disimpact a blocked bowel here.

Fear of toilets

Emily may have had a genuine fear of toilets which led to her stool withholding behaviour. Fear of toilets is known as ‘toilet phobia’. Fear of the toilet is common among children with autism and can also affect children who are not on the autistic spectrum.

According to Anxiety UK, toilet phobia can be caused by many factors including anxiety, fear, trauma and learned behaviour from another person. Emily’s toilet phobia may have led to her first painful pooing experience or may have been caused by it.

The recommended treatment for toilet phobia is Cognitive Behaviour Therapy (CBT), but other treatments such as counselling, guided self-help, and lifestyle changes can also be used to manage the condition.

How to adapt the toilet for a child with autism

The toilet/bathroom can be adapted to make it more appealing and ‘sensory-friendly’ to children that have a fear of using it. Some ways of adapting the toilet and how it is used include:

  • Placing a mat on the floor to cover shiny or cold tiles which children might not like walking on
  • Keeping distractions such as strong smells, mirrors and windows to a minimum
  • Using mood music and soft lighting to make the space more relaxing, calm and appealing
  • Avoiding flushing the toilet when the child is in the room as the sound may scare them
  • Decorating the toilet to turn it into a fun and inviting place: the child’s favourite characters, pictures or posters can be used to make it a familiar and nice place to be. A mum contacted ERIC to say she had managed to get her son to use the toilet after decorating it like a spaceship, with aluminium foil on the walls, stickers of planets, and books about outer space.

How to get a child with autism to allow physical examination

The inquest into Emily’s death heard that she had refused to let her GP medically examine her and that her parents had tried in vain to get her to allow an examination. Her GP said that had he been able to examine her, he would have been able to prescribe appropriate treatment at the right time and she would not have died.

Emily’s mother Geraldine Titterington said her daughter had “severe anxiety” about seeing doctors or going to a hospital. She added that she believed if her daughter could have been able to have a dedicated support person to build a relationship with, her death might have been prevented.

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.

Lorraine MacAlister, an Autism Training Consultant for NAS, suggested some other approaches that GPs and parents could attempt in order to make a child with autism more willing to be physically examined:

  • Use social stories and visual information to explain what happens in an examination
  • Make practice visits to the doctor
  • Explain how long an examination will last
  • Alter the environment the examination takes place in
  • Let the child hold something familiar during the examination
  • Find a shared interest with the child to establish a connection with them at the start of an appointment

For more information on toileting for children with autism, visit the National Autistic Society’s website.