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.
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.
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.
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.
- Thank You, Autism Speaks: You accidentally proved me right about Autistic instincts - November 21, 2021
- Hecklers from the Penn State conference not finished: Drexel professor decides which Autistics are really autistic - November 7, 2021
- The Identity Theory of Autism: How Autistic Identity Is Experienced Differently - October 17, 2021