Huw’s story

Huw's mum Karen is sharing her experience of getting her son's constipation diagnosed and treated. She highlights the challenges when a young person is autistic and issues like constipation are attributed to their behaviours rather than being assessed for an underlying health condition.

Young man called Huw My son Huw is profoundly autistic. He is nonverbal, uncommunicative, and given to extremely challenging behaviour when in crisis.

Over the years we have had several periods of crisis, for the most part due to an unrecognised physical issue (bad ears, bad teeth). He didn’t have obvious physical issues, although his physical development was erratic.

He had been doubly incontinent until about age 10 or so, at which point he started to become toilet trained, for reasons that I still don’t fully understand. About a year later, he was fully toilet trained, which was a great relief.

The beginning of constipation

When he was about 12, I started wondering if Huw was also constipated. He seemed to be occasionally in pain, and his behaviour was extremely challenging without obvious cause.

For the next five or six years, I put an enormous amount of effort into managing his constipation, and when it was finally managed well, the difference in his quality of life, in his behaviour, in his levels of engagement and cooperation, was astonishing.

I’m not sure how long this had been going on for before I realised. Huw was under the local paediatrician, who referred us to a dietician, and ultimately to the local paediatric gastroenterologist. At around the same time we had an abdominal X-ray that showed him to be badly impacted, with his bowel quite stretched.

At this point, constipation went, for me, from an occasional query resulting in occasional experiments with laxatives, into a full-on management problem. This was the start of the very long journey of improving things.

We tried different combinations of laxatives and were closely monitored by the paediatric gastroenterologist. We had a lot of ups and downs, and I did disimpactions on several occasions—it was a very long process.

Looking for a cause

We were not quite sure as to what had caused the problem in the first place, but we suspected withholding, and with what I know now about his levels of anxiety, I would strongly suspect that it was an attempt to control any part of his life.

One thing I also believe, looking back, is that when we originally started with just macrogol laxatives, things got quite a bit worse as it bulked him up even more, without him being able to move things. Once we added a stimulant laxative things improved.

Later, I strongly suspect the stimulant laxative started causing painful stomach cramps and we lowered the dose, and then discontinued it, which worked well as I kept up with the macrogol laxatives, which by then could do their job without too much difficulty.

At a certain point, the laxatives were working well and his stools were nicely soft, but still tended to not get passed, probably due to his autism as opposed to some physiological issue.

Finding a maintenance dose

I have experimented with different maintenance doses, and for now, seven years later, have settled on a more or less permanent daily dose of a macrogol laxative. I suspect his autism means that he will always be highly at risk of constipation, and it is so important that we not let it subtly build up.

Now that we know how subtle it can be, we are warned, but of course every new care setting has to be reminded of this.

Huw’s story raises several issues, the first and most important is the difficulty of recognising, and having others recognise, how constipation might present itself in those with profound learning disabilities, autism, and particularly challenges in communication.

His main symptom throughout, was terrible behaviour that was not explainable in any other way. We had to rule out behavioural or sensory issues, which we did, but that took a long time and I do regret that I didn’t rule out pain first.

Looking back, the occasional unexpected episode of soiling was probably down to constipation. There are treatments, but you need a diagnosis first, and this is a huge obstacle for many people.

This leads to a second issue: constipation can be a problem even if normal bowel movements seem to be happening. Very large bowel movements, in particular, can be a sign of a stretched bowel. Soft stools can still be constipated.

A third issue has to do with how advice was offered—we had a lot of care and advice from the gastroenterology consultant, but looking back, I suspect that a nurse-led continence clinic would have been a better use of resources, with occasional rather than regular input from the gastroenterologist.

It would have been easier to go through the very basic mechanics of how bowels work, and, crucially, exactly how macogol laxatives work and how to mix and administer them. (things weren’t helped by the fact that once you get Huw into a clinic appointment, you have about 5 minutes of talk before he kicks off and has to leave).

Recommendations for other parents

I would strongly urge all parents to use all available resources, especially those on the ERIC website and to watch carefully the videos about how macrogol laxatives work and how to mix them.

Like me, so many parents that I speak to are not fully aware of how important it is to get this right. They decide the macrogol laxatives are not working or are even making things worse.  They despair of fixing things and move on to other more intrusive remedies before macrogol laxatives have been given a good chance to work.

Constipation isn't an inevitable part of autism

There is always the problem with diagnostic overshadowing(1) . Constipation is best approached as a condition in itself and treated as such. It is not an inevitable part of autism (or other learning disabilities).

Constipation is very common among those with disabilities; it can be very effectively managed; quality of life improves greatly with effective management. I really wish this were better known.

More information and support

NHS England has produced guidance to support clinicians in the prevention and management of constipation in children and young people.

The National Clinical Constipation Pathway for Primary Care for Children includes a clinical pathway and a series of videos featuring an ERIC Nurse specialist, aimed at health professionals and the families they support.

Get more information on supporting autistic children with toileting including tips for managing sensory differences.

Note: (1) "Diagnostic overshadowing occurs when a health professional makes the assumption that the behaviour of a person with learning disabilities is part of their disability without exploring other factors such as biological determinants" from The Royal College of Nursing website accessed 18th July 2023

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