Aspergers is a diagnosis that, like anything else, exists on a bell curve of symptoms and severity. It rarely exists as a solo diagnosis and oftentimes has multiple issues overlapping, which leaves parents, siblings and caregivers at a loss for what to do when faced with challenges.
What is ‘normal’ behaviour for a teenager, may be exasperated by what is ‘normal’ behaviour for a person with Aspergers. The line is not clear and neither are the parenting strategies because it can become impossible to differentiate between the autism and the actions of a normally misbehaving teenager testing boundaries.
There will be as many suggestions as there are families. What works for one will be abhorrent to another. What works perfectly well for years may stop working entirely with a suddenness that leaves parents scrambling for advice. When you have a child with multiple exceptionalities, you are faced with constant stress because as they enter the teenage years and progress towards adulthood, it means a certain level of autonomy regardless of the child’s ability to actually handle the responsibility.
One of the disturbing things that a parent faces when they have a child with Aspergers, is when there seems to be a complete regression of age appropriate milestones which forces social isolation onto the child and the family because of the necessity to deal with the issue. When faced with a 14 year old throwing a tantrum suitable for a 2 year old, it is hard to not feel judged because of your child’s behaviour.
When regression includes the actual inability to maintain hygiene or when it develops into the inability to properly toilet in a timely fashion, it leads to more than just social judgement and it enters the realm of pathogens. People can get very sick from the presence of fecal matter and someone who is continually soiling themselves is treated as a social pariah by their peers.
As parents dealing with a teenager who is soiling themselves on a daily basis, the stress this creates becomes overwhelming to deal with. There needs to be a strategy in place to deal with how you plan on handling the situation. So not only are there are multiple issues that have to be managed individually, there is the problem of dealing with the responsibility of clean up and basically re-training toileting skills.
Regression is an impossibly hard thing to deal with on its own and adding soiling oneself, or encopresis, to it makes the situation beyond frustrating for parents; it becomes untenable very quickly. Children who have encopresis, will lie about soiling themselves, even when it is clearly evident by smell alone, that it has occurred. They are able to lie about it because they are questioned about their reasons for not using the bathroom, as opposed to using statements of fact about the results of their actions. Simply learning to reform how you communicate, will alleviate their ability to lie about it, as you are no longer questioning them about it.
The idea most parents have a hard time understanding is that by controlling a teenagers food intake, you can help to manage their encopresis by using biological functions to your advantage; so that while the teen Aspie will continue to lie when given the opportunity to, food control is a large part of the primary issues this child has, though they each have to have their own consequences and strategy.
Modification of any suggestions, is tailoring the plan to suit not only a families individual need and personality of the child with Aspergers, it allows for the constant fluid change required by caregivers who deal with this stressful situation. This is simply an example of what DID work for a single family. I is not meant to be inclusive of options, simply a place to start from.
- The child needs weekly therapy with a certified behavioural therapist who specializes in autism
- get reading material about fecal contamination, e-coli and pathogens that deal with transmission of fecal material into food and how that impacts peoples health. Material about safe food handling and preparation techniques as well as how to launder clothes which have been soiled to avoid illness. This teaches the child the ‘why’ of why it’s important for the parents to not have them soil themselves.
- Remove all underwear and replace them with adult sized pull ups.
- take the child to a Doctor for a diagnosis of Encopresis and provide the school with information about the condition and the direction to remove the child from the class setting immediately and to call you if the teachers smell feces, so you can pick the child up along with any school work that will be needed for the rest of the day. Take the child home to shower, change into a new pull up and finish the school work.
- Bacterial issues with feces strewn about the house from hidden soiled underwear is not okay. Teens with Aspergers will often hide soiled underwear. You have to treat their bathroom habits as if they were a toddler you are toilet training. Right now the child is using food intake as well as his waste production as a form of control. You have to stop it.
- by controlling his food intake, you are also controlling his waste output. Provide oatmeal for breakfast. Foods high in fiber. Lots of beans and roughage. The result is a bowel movement.
- food is to be eaten at the table and no where else. if the child refuses food, no issue, remove the food and provide the next meal at the appropriate time. If they ask for food in between, remind them they refused what you offered. Do not make it a battle or an issue as it’s not. no child ever starved from missing a single meal.
- if the takes food, or sneaks it to eat and hide the remains, then lock the cabinets or place a door to the kitchen and lock it so they have no access. End of battle.
- buy the child a set of towels and face clothes that will be for their use only, so it is separate from the rest of the family, so it can be disinfected properly.
- new rule. Mandatory showers after a bowel movement.
- new rule: when they do soil the pull up; it is placed inside a bag and it is tied for garage disposal. They shower, put on a new pull up and gets re-dressed in new clean clothes; they then clean and disinfects the tub from fecal contamination, which the parent supervises. They then do a load of laundry, cleaning the clothes they were wearing as well as the towel they used. It’s a lot of work which takes a lot of time when you factor in the tantrums which come with it, but it’s the natural consequence to their The key is for the parent to not be upset. You would not be upset when toilet training a toddler. So think about it in that aspect.
- new routine involves parents providing a bag for child to dispose the adult diaper in and the parent checking it for feces…every single night.
- new routine involves parents not giving the child personal freedom when they can not be trusted. Hiding food and hiding soiled underwear can not happen if they are being supervised.
- exercise is absolutely mandatory. I can not stress this enough. You can force his body to have a bowel movement by eating the right foods, and making they exercise. A healthy teenager can easily do a 10 kilometre walk/run twice a day; in the morning and then again before dinner, supervised and attended by the parents. People who exercise tend to be hungry and less picky about what they are served. Exercise also acts like a stress release for tension and anxiety and there is no down side.
- limit ALL electronics to specified times as it is a reward not a right. Often times they get too busy playing a video game and will not recognize their body signal to use the toilet.
- Do not take a child with encopresis out to eat with you right now, if at all possible, as that is setting them up for failure. If you are out and have no choice, ask if he’d like to join you for dinner. If they says no, then take the child to the mall and drop them off for an hour while you eat and make plans for them to come back and meet you at a specific time. You take the battle of refusal to eat, away, before it begins.
- remove milk, juice, sugar, refined foods, white foods, processed foods from their diet. If it comes in a box or a can, do not buy it and they can not eat it. I’d take the child for allergy testing to see if there were any food intolerances which are contributing to the encopresis. Change to a diet high in plants and grains. If they eat less then the need food with a higher nutritional value, is imperative
- patience and time. You will need both to deal with this. Unfortunately, you are looking at years, not weeks or months, to get this ‘mostly’ under control. If you are firm, fair and consistent it will work. Just remember, the child is NOT their age when it comes to toileting skills. The regression has made it impossible for you to give them the freedom a neuro typical normally has.
- Lying; if confronted about something that is undesirable, many Aspie teens will lie about it. Always. It is a reflex for them, no different than when your foot swings when it’s hit with a mallet by a Dr. Don’t force them to lie by questioning them. Instead, you have to provide evidence and present things in a documentary style. “Did you put the plate under your bed?” will always get a reply of “No, it wasn’t me”. Instead say “When you put the plate under the bed, it attracts bugs and grows mold which are dangerous when you breathe them.” Then make him take the plate and wash it and disinfect it by hand, dry it and put it away then mop the area it was in and wipe down the surface areas. Every time. And if food or underwear were hidden, then why wasn’t he being supervised? How was he able to do it when he should have been in adult sight all the time?
- as repulsive as soiling is for a parent to have to deal with, when it is happening to an otherwise healthy teenager, you HAVE to separate the action from the person. Would you be upset with a 2 yr old for soiling? No. So you have to take the time to deal with it and it will take much longer as you will be supervising another person doing it instead of doing it for them. You are teaching them accountability for their actions and responsibility for their body and what it produces. This takes years to re-learn. There is no quick fix.