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Aspergers Children and Encopresis

Question

I have my 12 yr old Grandson living with my husband and I, It isn't easy because his mother had to leave him with us for awhile. We are implementing your assignments in your book, it hasn't been easy but we are trying. One thing that bothers us more than his behavior is him soiling his pants. I don’t know why and I have tried asking him why he does but all he says is he doesn`t know. I know that maybe he doesn`t know why but it is hard for my husband to understand how he can let it sit in his pants without a care. When my husband addresses this with my grandson he is confronted with a complete shutdown, he won`t look at him, answer him. I understand why he does but when I approach him on it, I will ask if he soiled his pants his first reaction is to tell me no he did not do it. Then I ask to check his pants, when I do I can see it and at that point I calmly ask him to get some clean clothes go to the bathroom have a shower and I make him clean out his shorts. He does this almost every day and when we noticed he didn`t do it that one day we praise him to no end. I don`t know what I can do to help him stop or why it happens in the first place. I would appreciate any comments as to how I can help him get over this. My grandson isn`t the easiest to handle when he gets to upset he is 12 at 6` tall and 230lbs so having an easy approach would be greatly appreciated.


Answer

Some Aspergers children beyond the age of toilet-training who frequently soil their underwear have a condition known as encopresis. They have a problem with their bowels that dulls the normal urge to go to the bathroom, and they can't control the accidents that typically follow. Problems with encopresis and constipation account for more than 25% of all visits to doctors who specialize in disorders of the stomach and intestines.

Most encopresis cases (90% +) are due to functional constipation (i.e., constipation that has no medical cause). The stool (or bowel movement) is hard, dry, and difficult to pass when the youngster is constipated. Many children "hold" their bowel movements to avoid the pain of constipation, which sets the stage for having an accident. Moms and dads are often frustrated by the fact that their youngster seems unfazed by these accidents, which occur mostly during waking hours.

Denial may be one reason for the youngster's indifference. He/she just can't face the shame and guilt associated with the condition (some even try to hide their soiled underpants from their moms and dads). Another reason may be more scientific: Because the brain eventually gets used to the smell of feces and the youngster may no longer notice the odor.

Well-intentioned advice from moms and dads isn't always helpful because many parents mistakenly believe that encopresis is a behavioral issue. Frustrated moms and dads and caregivers may advocate various punishments and consequences for the soiling, which only leaves the youngster feeling even more humiliated. Up to 20% of children with encopresis experience feelings of low self-esteem that require the intervention of a psychologist or counselor. Punishing or humiliating a youngster with encopresis will only make matters worse. Instead, talk to your doctor. He/she can help you and your youngster through this treatable problem.

As the colon is stretched by the buildup of stool, the nerves' ability to signal to the brain that it's time for a bowel movement is diminished. If untreated, not only will the soiling get worse, but children with encopresis may lose their appetites or complain of stomach pain. Most cases of encopresis can be managed by your doctor, but if initial efforts fail, you may be referred to a gastroenterologist.

Treatment is done in three phases:
  1. The first phase involves emptying the colon of hard, retained stool. Different doctors might have different ways of helping children with encopresis. Depending on the youngster's age and other factors, the doctor may recommend medicines, including a stool softener (such as mineral oil), laxatives, and/or enemas. As unpleasant as this first step sounds, it's necessary to clean out the bowels to successfully treat the constipation and end your youngster's soiling.
  2. After the large intestine has been emptied, the doctor will help the youngster begin having regular bowel movements with the aid of stool-softening agents, most of which aren't habit-forming. At this point, it's important to continue using the stool softener to give the bowels a chance to shrink back to normal size (the muscles of the intestines have been stretched out, so they need time to be toned without the stool piling up again).
  3. As regular bowel movements become established, your doctor will reduce the youngster's use of stool softeners.

Keep in mind that relapses are normal, so don't get discouraged if your youngster occasionally becomes constipated again or soils his/her pants during treatment, especially when trying to wean the youngster off of the medications. A good way to keep track of your youngster's progress is by keeping a daily stool calendar. Make sure to note the frequency, consistency (i.e., hard, soft, dry), and size (i.e., large, small) of the bowel movements. Patience is the key to treating encopresis. It may take anywhere from several months to a year for the stretched-out colon to return to its normal size and for the nerves in the colon to become effective again.

In the meantime, diet and exercise are extremely important in keeping stools soft and bowel movements regular. Also, make sure your youngster gets plenty of fiber-rich foods (e.g., fresh fruits, dried fruits like prunes and raisins, dried beans, vegetables, high-fiber cereal, etc.). Because children often cringe at the thought of fiber, try these creative ways to incorporate it into your youngster's diet:
  • Add bran to baking items such as cookies and muffins, or to meatloaf or burgers, or sprinkled on cereal. (The trick is not to add too much bran or the food will taste like sawdust.)
  • Add lentils to soup.
  • Add shredded carrots or pureed zucchini to spaghetti sauce or macaroni and cheese.
  • Bake cookies or muffins using whole-wheat flour instead of regular flour. Add raisins, chopped or pureed apples, or prunes to the mix.
  • Create tasty treats with peanut butter and whole-wheat crackers.
  • Make bean burritos with whole-grain soft-taco shells.
  • Make pancakes with whole-grain pancake mix and top with peaches, apricots, or grapes.
  • Serve apples topped with peanut butter.
  • Serve bran waffles topped with fruit.
  • Sneak some raisins or pureed prunes or zucchini into whole-wheat pancakes.
  • Top high-fiber cereal with fruit.
  • Top ice cream, frozen yogurt, or regular yogurt with high-fiber cereal for some added crunch.

Have your youngster drink plenty of fluids each day, including water and 100% fruit juices like pear, peach, and prune to help draw water into the colon. Try mixing prune juice with another drink to make it a little tastier. Also be sure to limit your youngster's total daily dairy intake (including cheese, yogurt, and ice cream) to 24 ounces or less.

Successful treatment of encopresis depends on the support the youngster receives. Some moms and dads find that positive reinforcement helps to encourage the youngster throughout treatment. Provide a small incentive (e.g., extra video-game time) for having a bowel movement or even just for trying, sitting on the toilet, or taking medications.

Whatever you do, don't blame or yell — it will only make your youngster feel bad and it won't help manage the condition. Show lots of love and support and, assure your youngster that he or she isn't the only one in the world with this problem. With time and understanding, your youngster can overcome encopresis.

The Aspergers Comprehensive Handbook

10 comments:

Anonymous said...

A wheat free diet also helps tremendously.

mom said...

I'm in the same position with my 12y.o. son who also is on the edges of the autism spectum with psych. analysis suggesting NLD. He has been disgnosed with encopresis and we are using miralax daily per his dr's advice. This is not the first time we're going though this---in fact it's hard to think of a time when these accidents weren't occuring and we weren't seeking help. It's very hard for a 12 year old to constantly have "bathroom issues" when he's very shy anyway and it's so hard for parents to watch and grill him on the shape, consistency and frequency of his bm's and ask if he's "soiled". This is awful for him at school, too It's so humiliating for him. I feel we need help with the "whole child" aspect of this problem-not just the cleaning out. I don't know where to go for this or how to do it without mortifying my child.

mom said...

I'm in the same position with my 12y.o. son who also is on the edges of the autism spectum with psych. analysis suggesting NLD. He has been disgnosed with encopresis and we are using miralax daily per his dr's advice. This is not the first time we're going though this---in fact it's hard to think of a time when these accidents weren't occuring and we weren't seeking help. It's very hard for a 12 year old to constantly have "bathroom issues" when he's very shy anyway and it's so hard for parents to watch and grill him on the shape, consistency and frequency of his bm's and ask if he's "soiled". This is awful for him at school, too It's so humiliating for him. I feel we need help with the "whole child" aspect of this problem-not just the cleaning out. I don't know where to go for this or how to do it without mortifying my child.

SteveLA said...

This is the most difficult issue with our 'Aspy'. She is 11 years old, bright, beautiful, and so funny. But she sill has this issue. Are there surgical approached to this that have had success? we've tried everything everyone else has mentioned. We are getting her a colonoscopy next week, and another child in her class had a similar condition, which was solved by surgery according to her principal.

Thanks

Anonymous said...

My son is 12 and has the same soiling issues asd I'm aspergers and have suffered the same problem since I was young all I can say is from my experience is the feel of going is really horrible so holding it in is a better option so I can kind of understand my son and unfortunately everything has been tried with him nothing's worked I find with me as well I can't use the toilet if people are about - surgey is so drastic no

Twinky03 said...

Unfortunately, my 12 yr old son is a mild Aspie & we are having this same struggle we have tried everything. Like others I can't recall not dealing with this awful issue. Reading this does offer me some encouragement & I don't feel like the only one going through this nightmare.

Armywife said...

We've been dealing with this problem in our 9yo since he potty trained 6 years ago. He's seen multiple peds GI docs, OTs, and psychologists - and even had a colonoscopy & barium swallow. All resources and docs I've seen give the same advice - high fiber diet, bowel clean out, daily laxatives, then gradually wean the laxatives, then voila! Problem solved, right? Wrong! How exactly do you give an autistic kid a high fiber diet when he only eats about 10 items and would rather starve than try anything new? Seems to me that this is a rampant problem among autism/Aspy kids and no one has studied a real or reasonable solution. My heart breaks knowing some day he'll be bullied for smelling like crap at school.

Jim Chapman said...

I've got a 15-year-old with the same issues. He sits and plays games for hours (becoming violent if taken away) and soils himself. Sometimes, 2-3 times in a non-school day.

He has done it at church - which is a horrible place to have this happen - and I have had to rescue him at least twice from school when he has had incidents.

We did the gastro and psych routes, and no response. Giving him laxatives just makes it worse. Counseling got too expensive and was not helping with this issue. Money rewards do not work.

The kid likes sweets and dairy, but he overeats anything we have, so we don't keep the fridge stocked. He will drink a 2-liter coke in no time; if I buy little debbies for lunches, they are gone in an afternoon.

I tried locking up the food, but he figured out how to prize the chest open on the side to get at the sweets.

We even tried diapers, but he just started urinating in them as well as soiling himself.

I'm furious; he has ruined his $1500 bed, as well as $2000 couch with his accidents. He takes a shower and leaves his droppings there. And, he swears up and down that he "sat in something" but we can clearly see what has happened.

ON top of that, he won't wash his clothes as directed, and then he comes and steals MY underwear to wear.

will belenguer said...

I understand this thread is old but I have 8 yr old twin boys. The oldest was diagnosed with encropreses 4 yrs ago and was just diagnosed last week with aspergers and adhd. This whole time his mother, my fiance, has been telling me that the doctor told her that there was no cure and that the only thing we could do is supply suppositories every few days and that he will be dealing with the encroprese every day for the rest of his life. It was just a few months ago that he started acting out causing me or his mother having to go pick him up from daycare. It was at that point when we decided to go get him evaluated and checked for adhd and aspergers. Now his brother is the complete opposite. Healthy, thick but solid boy. It is affecting him as well to the point where he really doesn't spend much time with his older brother. I am at my wits end and so is his mother who has all but given up. But now from reading all this I am guessing that if I start giving the suppositories everyday maybe it will be enough to boost his ego after having less frequent accidents. Sorry for all rhis but this has been the first time I have felt brave enough to say anything especially after finding out this problem may be able to be resolved. Thank you.

Suzanne Callahan said...

I have the same problem with my 8 year old Aspergers daughter. Giving her culturrel and probiotics made a tremendous difference

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