My struggle with childhood incontinence and autism

Today’s post is from Gemma, mom to Isla and blogger at islasvoice.co.uk. She has teamed with Aeroflow, one of our regular brand sponsors at Chronic Illness Bloggers, to discuss her journey and advice for dealing with childhood incontinence and autism. Take it away Isla…

When people think of autism they seldom think about incontinence and toileting issues. This is probably because the autism spectrum itself is so vast, with every autistic individual having very different traits and struggles. You may have heard the saying ‘if you’ve met one person with autism, you’ve met one person with autism’ and there has never been a truer statement!

For our daughter autism means learning disabilities, developmental delays, lack of understanding, huge communication issues, sensory issues and these have of course meant toilet training isn’t at all easy. For some autistic individuals, toilet training may never happen and if and when it does it may have taken years to get to that point.

There are so many reasons why people like our daughter struggle with incontinence issues:-

Autistics with communication issues may be unable to communicate that they need the toilet.

Lack of understanding and awareness may mean autistics don’t understand why they even need to use a toilet.

Some autistics don’t feel the urge to go to the toilet until they are absolutely desperate to go. They don’t get a feeling, and warnings like we do.

Fear of the unknown. The toilet is new and scary. It can cause huge levels of anxiety.

It’s different to what they are used to and is a change in their normal routine which can cause confusion.

Sensory issues may cause some autistics to prefer to use pads, nappy’s or pull-ups and not want to use a toilet. This may be because it feels safer to them and because of the different sensations within the body when using a toilet.

It’s difficult to explain to a child with autism and communication and/or learning disabilities why they need to use a toilet and it’s difficult for them to communicate why they’d prefer not to. Without that conversation and understanding imagine how scary that whole process can be.

Our Journey

I would love to see her toilet trained soon because there are so many issues we have faced by her not being…

–Support with supplies is available but it can feel varied and support, services, and products vary dependant on which country you live in. For example, in the UK with the NHS, many parents report it’s a postcode lottery. However, in the US, Medicaid may cover the costs for your continence products if you have an autism diagnosis and many people don’t realize that! Aeroflow Urology, for example, can help parents of children with autism and special needs from childhood to adulthood get Medicaid covered incontinence products. They will even send you samples. For more information about this and to apply, please find more information on applying here . You can also find out more about helping your child with incontinence issues here.

-The cost of pull-ups, pads, nappy’s and wipes is extortionate when your child is no longer able to wear products that fit babies and toddlers because they are simply too big (which is why Aeroflow’s service is worth trying!). It can also be difficult to keep on top of ordering; whilst Aeroflow’s offers diapers by subscription, direct to your door!

-Disabled toilets are a huge issue for us. If we use a disabled toilet we often get people staring at us or making rude remarks because our daughter’s disability is not visible. Standard disabled toilets are not even suitable for her to use because unlike changing places facilities they do not always have an adult-sized changing bench.

-Lack of support to toilet train children and adults with learning disabilities is a real problem.

-If people notice our daughter is wearing a pull-up they immediately cast aspersions on why and can be very judgemental.

-Clothing doesn’t always fit our daughter properly because she is wearing a pull-up. We quite often have to buy bigger clothes to cover her properly and keep her dignity.

-I still have to carry a changing bag with me everywhere I go.

The Future

I really hope that things change in the near future. In an ideal world, our daughter would have all of the support she needs to become toilet trained and disabled toilets would cater for all disabled people and not just those who can use a toilet and transfer on to it. In 2019 I still feel we are a long way off supporting autistics with this very important life skill. However, it is great to see Aeroflow Urology solving some of these issues with their service; and making it easier an more convenient to get pediatric supplies.

Toileting shouldn’t be a taboo topic that parents of disabled children can’t discuss for fear of judgement, it’s time we had those conversations.

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