When considering toileting needs we need to consider more than just continence issues (although it is important to know if a person knows when they need the toilet and if they can make it to the toilet on time).
Interoceptive differences can mean that Autistic people don’t always know when they need the toilet until they are desperate if at all or may not know when they have finished urinating or defecating. We also know there are higher rates of gastrointestinal and digestive issues that can cause additional difficulties. Constipation can lead to overflow soiling, which might be mistaken for diarrhoea. Pain or discomfort associated with bowel movements can lead to withholding
There can be sensory issues that cause distress such as strong air fresheners, the sound of the toilet flush, mirrors or fans for example. Additionally, people may have difficulties with balance or body positioning.
Non-speaking and semi-speaking people may find it difficult to communicate their need for the toilet. Challenges with motor skills can make it difficult to sit on the toilet safely and maintain balance. Fine motor skill difficulties can impact the ability to wipe effectively. Some people may over wipe and cause soreness.
You should also consider a tendency to hyper-fixate on preferred activities that can lead to withholding or distractibility meaning people forget that they need the toilet or don’t always prioritise toileting.
There may also be some historic trauma around toilet training as a child or bedwetting which can increase anxiety around using the toilet, not to mention the potential for germaphobia. Unpredictable incontinence can also cause anxiety (such as that following childbirth or relating to constipation.
It is always worth considering whether an application for a Radar key to allow the use of disabled public toilets is appropriate. This reduces the social interaction and potential embarrassment of public toilets, as there are many unspoken and tacit social rules around this such as which urinal it is appropriate to use. Cultural sensitivity should also be paramount as different culture use different methods of cleaning themselves after toileting.
Key questions to ask around toileting
• Do you always know when you need the toilet?
• Can you always get to the toilet on time?
• Do you use incontinence pads or other toileting aids?
• Have you ever fallen getting off and on the toilet?
• Can you wipe and clean yourself appropriately after toileting and without causing pain?
• Has there been any damage to the toilet from sitting down too hard for example?
• Is there any mess left around the toilet after it has been used?
• Do you use any toileting equipment such as a commode, raised toilet seat or toilet frame?
• Do you need grab rails around the toilet?
• Do you need additional care for a catheter or stoma?
• Do you experience frequent urinary tract infections, constipation or diarrhoea?
When to refer to an occupational therapist and when provision of care will be most appropriate
A carer is typically an appropriate option when the individual has largely mastered the physical and cognitive skills of toileting but requires physical assistance. This might include help with:
• Mobility to and from the toilet.
• Managing clothing (undressing and dressing) if there are physical limitations.
• Maintaining balance while sitting on the toilet.
• Wiping if there are physical reach or dexterity issues.
• Cleaning up after toileting.
• Using adaptive equipment that has already been prescribed and the individual is familiar with.
• Prompting or reminders to follow an established toileting routine if the routine has already been developed and the individual understands it.
• Assistance with managing continence products such as changing pads, emptying catheters or stoma bags.
• Or if challenges are primarily related to the consequences of incontinence, such as skin care and hygiene after an accident.
An occupational therapy referral is most appropriate when the individual is experiencing difficulties learning or performing the skills required for toileting. This includes:
• Sensory sensitivities that make the bathroom environment or the act of toileting overwhelming.
• Difficulties with interoception (recognizing bodily cues).
• Motor skill deficits affecting balance, coordination, and fine motor skills needed for dressing, undressing, and wiping.
• Cognitive challenges in understanding the steps involved in toileting or establishing a routine.
• Anxiety or fear related to toileting.
• A comprehensive assessment is needed to understand the underlying reasons for toileting difficulties.
• Environmental modifications or adaptive equipment are likely to be beneficial to improve independence and safety. The OT can assess the need for and recommend/train in the use of items like grab bars, raised toilet seats, commodes, bottom wipers, and sensory adaptations.
• The individual is resistant to toileting, or it causes meltdowns, shutdowns or other distress behaviours.
• The goal is to increase the individual's independence in toileting as much as possible.
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