There are a lot of parents of autistic and otherwise disabled children fearing what will happen when school starts and their child is not able to consistently use the toilet. Even if the child can toilet reliably, they may not be able to dress or clean themselves afterwards.
Parents fear bullying and teasing from other children, abuse from staff who have to assist children with toileting and hygiene, and pressure from adults to be more strict— as if not being able to toilet is a behavior issue.
Toileting Is NOT a Behavioral Issue
There are many reasons neurodivergent children— and adults— may experience incontinence or may need assistance with dressing or hygiene.
Medical Conditions
Many autistic people have Ehlers Danlos, Marfan’s, or other connective tissue disorders that make their joints and smooth muscles extra elastic (stretchy). Because of this, bladders may stretch to hold more fluids, or the muscles that help keep fluids inside may be extra elastic.
Other medical conditions could contribute to consistent or transient (comes and goes) incontinence, including frequent or recurrent urinary tract infections (which may be caused or exacerbated by sensory issues). Always discuss your concerns with your child’s pediatrician.
Sensory Issues
Many autistic people may have poor interoception, or the ability to recognize the body’s internal signals for things like temperature, hunger, thirst, and the need to go to the bathroom. They may not be able to recognize the fullness of their bladder or bowels and the need to evacuate until it is an emergency, if at all. Also, for the same reason, they may not be able to will their bodies to release.
All babies and toddlers experience this, but typically-developing children’s nervous systems may mature on a different timeline. While many autistic kids may toilet at the same age as non-autistic peers, it is very common for autistic children to independently dress or toilet later.
Other sensory issues may play a role, too. Some children need to move a lot to help their sensory systems harmonize, and they may need to be moving to feel in control enough to void.
Some autistic children (and adults) may have apraxia or dyspraxia, which are movement disorders related to coordinating the body’s movements. They may not have the gross motor skills (control of large body movements) to be able to dress themselves. This is a sensory issue that is extremely common among autistic children.
Inconsistent Skills
All autistic people are impacted by sensory dysregulation. This means that when they are well-regulated, they may be able to do something that they’re not able to do when dysregulated— like speaking, using utensils, or tolerating loud sounds.
With regards to toileting, being well-regulated may mean that children are able to coordinate the gross motor movements to dress themselves or recognize the need to use the bathroom. But if their sensory systems are dysregulated, they may be temporarily unable to do these things.
Dysregulation can happen because of tiredness, illness, social overwhelm, emotional overwhelm, sensory overwhelm, hunger, thirst, heat, cold, or a variety of reasons.
Toileting, Therapies, and “Interventions”
There are many adult autistics who still need to use incontinence products or timers to remind them to use the bathroom. Many of the autistic advocates you follow on social media use these products. They have the right and the option to keep that information private.
Children also have a right to privacy and dignity.
Toileting and dressing are not merely functions of behavior, and using a behavioral approach to “fix” biological differences is abuse.
If your child has asthma, you treat them with an inhaler. You do not employ a therapist who praises and rewards them for not wheezing. If your child is farsighted, you get them glasses or a seat closer to the front of the class. You would never punish your visually-impaired child for not being able to see without accommodations.
Having a behavior therapist who has zero training on sensory issues or medical issues trying to “train” your autistic child to use the toilet can be humiliating and traumatic, can teach your child that they do not deserve privacy or bodily autonomy, and will implicitly teach them that they are failing or are “bad” for not being able to reliably toilet or dress without assistance.
There are occupational and physical therapists specialized in working with children with disabilities by helping them with exercises to strengthen their pelvic floor or to recognize and strengthen their sensory signals. Occupational and physical therapists can also help you to support your child to learn to toilet and dress themselves.
Please be aware that as a parent, you have the absolute right to decline any therapy, to fire any therapist, and to refuse any specific intervention that you are not comfortable with.
There are therapists in every field who are coercive or aggressive or who use behavioral approaches that leverage shame and/or praise to shape behaviors. There are therapists in every field who ignore a child’s emotional health and dignity and only focus on results.
You can have your child’s therapist coach you on how to support your child so they can learn— like most children— with the safety and dignity of having a parent support them in private moments. This means that your OT or PT can teach you how to help your child dress, undress, clean themselves, and toilet.
Toileting and School
Your child is legally entitled to disability services at school that preserve their privacy and dignity, and this includes access to help with toileting, hygiene, and dressing. It is illegal for public schools to deny these services.
If you’re in the United States, most insurance providers are required to provide disposable undergarments or diapers for children with relative disabilities.
Pull-ups are more discreet than traditional diapers. You can also be mindful of your child’s privacy by buying clothes that are not see-through or so thin that undergarments are visible.
Ask your children’s teachers, principals, and aids to normalize disability. Ask teachers to talk about all kinds of disability and to reinforce that accidents are not shameful or embarrassing.
While teachers can’t single out children based on their diagnoses, they can talk about how children are all different and bodies and brains work differently. They can talk about how some children need dietary accommodations, some need learning accommodations, some need physical accommodations, and all of that is okay.
NeuroClastic has several NeuroInclusive Stories that can help teachers talk about disability with their students. They can be found by clicking here. You can share these resources or this article with the staff at your child’s school.
Ensure that the school nurse and teachers have a few changes of clothes and disposable undergarments available in case of accidents.
Destigmatizing Disability and Incontinence
The World Health Organization (2017) notes that as many as 36% of adults experience a degree of urinary incontinence. These adults are the professionals you interact with, your children’s providers, your neighbors, etc.
Most adults with incontinence issues do not experience major disruption to their lives and are able to self-accommodate without their privacy being compromised.
Children deserve the same access to accommodations and privacy as adults. They deserve to be able to live their childhoods without being shamed for their disability.
Tell your child that it’s okay to have accidents or to toilet later than peers. Anxiety about toileting may exacerbate sensory issues or medical conditions that underlie toileting delays.
Shame-based or rewards-based messaging about toileting could lead to mental health conditions or fixations about toileting. Aggressive or “intensive” toilet “training” is inappropriate, can cause trauma, and should be avoided.
How All Adults Can Help Change the Conversation about Disability and Toileting
Monitor your language and be mindful about using shame statements regarding bedwetting, toileting, or having accidents— regarding people who are autistic or not. Every nervous system matures at different rates.
Don’t talk to your typically-developing children as if they are better behaved for toileting on a normal timeline, and don’t shame them for accidents.
This isn’t to say that parents should never celebrate milestones with their children or congratulate them for meeting goals, but that parents can be mindful to not imply that children who don’t meet those goals on the same timeline are lesser or that accidents are “bad” or embarrassing.
In fact, all parents of all children and all teachers of all students should talk about disability in a way that normalizes it. Teaching children explicitly that other kids learn, toilet, grow, etc. on different timelines— and that’s okay— will go a long way to promote a kinder and more inclusive society.
Be careful not to use insults related to toileting, diapers, or accidents. Many people joke about older children displaying emotions and adults behaving recklessly as “needing diapers.” Memes and comics often feature political figures in diapers.
Using diapers as an insult really just perpetuates a culture of shame about being disabled.
Just a generation or two ago, it was common for people to make fun of those who wore glasses as “nerdy,” and “short bus” was a common insult. A US President mocked a disabled reporter’s hand movements just five years ago.
Change is happening, and we can all do our part to ensure that it happens even faster. Having uncomfortable conversations with people who use disability as an insult will help.
Let’s face it. Disability is an eventuality for most people. If you live long enough, diapers are likely to be a part of your future. We are not just advocating for our children’s dignity, but for our future selves as well.
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15 Responses
Excellent article, thank you very much for bringing this into attention. I hate it when facts of life such as incontinence have moral judgement attached to it when actionable solutions already exist, it feels like punishment for doing what’s of actual help (in the case of diapers and many other helpful items with attached stigma in it).
Excellent article! Just wanted to add something related to my own experience. For people with autism and anyone who has issues with sensory processing, public restrooms themselves can be a nightmare. It may be easier for them to “hold it” as long as possible than to deal with the overwhelm they face doing something that seems routine to their parents, peers, and teachers. In addition to waste smells, the scent of unfamiliar cleaning fluids, brightly painted walls and harsh and sometimes poorly maintained or flickering lights can be overwhelming. There is also added anxiety in using facilities where other people can hear you using the toilet. And the time pressure placed on someone who may be struggling with motor impairments to get in and out of the stall quickly may make this experience even more overwhelming.
Yes. Not to mention the horror of the sounds of those industrial toilets that flush really hard and loud and the industrial hand dryers, and sometimes screaming babies or children.
Hovering while having very poor balance, needing more privacy than those doors with the big gaps, and then continuing to hover and pull off one single ply sheet of toilet paper at a time because the roll is too big to spin in the dispenser.
I am usually already panicked by trying to hold it, and I’m often drenched in sweat by the time I am finished, making it even harder to dress myself and pull on my jeans.
I’m getting stressed just thinking about it.
Automatic. Flushing. Need I say more?
Yikes!
Terra – You’ve opened a can of worms which I never knew existed. And something which obviously can really stress-out young kids.
This whole business of “Autism” is rather deep, –– it needs its own dictionary as well.
Once again, you’ve written a wonderful, educational article. You definitely know your business herein. Thanks for sharing experiences. Life. It continues…
Thanks! Somebody already pointed out that public restrooms can be a sensory nightmare and a reason for trying to hold it in; can I add that difficulty changing activity is another? Inertia, excecutive dysfunction – I know it stops me from looking after my basic needs, and I had so much trouble explaining it when I was little. People thought I had difficulty with my interoception, but I was fully aware of (and very very uncomfortable from) needing to use the toilet. I just… can’t perform the change in activity needed. My parents thought I “grew out of it” as I’m a teen now and don’t have accidents, but that’s not true. I can’t look after myself until there’s a huge amount of pain and fear pushing me to go. I also struggle in school with my perception of time, which is more of an ADHD thing, and that means I almost never manage to go during lunchtime or break (all time is the same and it falls through my fingers like sand). And yes, public bathrooms, as mentioned by the other poster, will often push me into sensory overload, so sometimes I walk in and have to walk out again.
Hi! How are you? I love this article, it’s really well written and I can relate well to this article. I have autism and I was fully potty trained when I was three years old, meaning I no longer had accidents. When I was two years old my mom and dad were in the bathroom with me and when they told me to grab toilet paper, I crumbled it up and threw it in the toilet without wiping 😂 then my mom said “you’re supposed to wipe your bottom with it” and the second time I got it right because I was a fast learner
Please address therapies for adults with this issue. Thank you.
Excellent article!
Just to add one more item to the list of reasons why…some with allergies or sensitivities to certain things may have “accidents” due to the sensitivities. Common triggers are artificial colors and flavorings and milk. These are common in schools…especially on party days/around the holidays. Some may attribute accidents to “excitement” or “having too much fun they didn’t stop to go to the bathroom”, but it may be something else entirely.
Sad for all who were “blamed” for something over which they had no control.
You definitely hit the nail on the head. Personally I’ve always struggled with toileting issues, and unfortunately I was punished and abused for having accidents and waking up to a wet bed. Now I’m 18, can’t control my bladder or bowels, all because my grandmother (who was my guardian) punished me for wetting the bed and having accidents, and never bothered to take the time and actually potty train me properly…..as an autistic adult that went through these things and is now suffering the consequences, parents or guardians, please think before you reprimand your child, teen, or autistic child or teen for having accidents or not making it to the restroom on time. Doing so shames them, embarrasses them, and quite frankly traumatizes them, making it less likely for potty training to be a reality. And also do realize, sometimes potty training might not be a possibility, but take every approach in potty training anyways just for the sake of it.
Firstly, just a note that the version of the article I’m reading has apparently gotten farsightedness and nearsightedness backwards – farsighted children (and adults!) have trouble seeing things *up close*. They would not want to move a thing closer to see it better!
Secondly…this is a really good and important article to have exist. And gods yes public bathrooms are so often a *disaster area* that I have to go find another one if I feel it’s possible to find *anywhere* better-maintained at *all*. Let alone the overwhelmingly loud hand dryers that are sometimes the only option *given!* I don’t think I’ve particular trouble *toileting* as in the act thereof, but honestly I wish there *wasn’t* so much stigma around incontinence products, especially for use-cases such as NY’s above – where, sure, it’s *possible* to go without (ha ha, very punny, my subconscious brain), but it also *sucks*. It ought not be so – mandatory to prioritize “proper” toilet use over personal comfort, even when you “can”.
I’m looking for a knowledgeable PT or OT in the Sacramento, California area to support an Autistic child with difficulty around toileting. Does anyone know where I can find a good referral?
Thank you for addressing this topic. My son is 24 and has no bladder or bowel control. We managed at home. Both fine and gross motor skills are moderate to severe delay and so toileting can be hard on him and caregiver.
It’s difficult to find protocols for this area. Every caregiver seems to do it their own way. Is there a protocol to assist with this function?
Very little info out there around this subject for adults.