HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

Education and Counseling for Individuals Affected by Autism Spectrum Disorders

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 (high-functioning autistic) 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


COMMENTS:

•    Anonymous said… Aspergers kids often have issued recognizing when they need to go. The nervous system effectively shuts down due to over stimulation so they don't feel it. Get him on a schedule. 30-45 minutes after eating every time. If he's constipated, put him on myralax to get him regulated. Above all, talk to him. Explain to him why he may not recognize what's happening and how you would like to help him get control over it. Make sure you stress that you want to help "him" have control. Discuss it in detail with him. Aspergers kids love detail and logic and rules.
•    Anonymous said… Buy the squatty pottty, they sell them at bed bath and beyond, it is a special stool that you put your feet up on and it helps positioning too. Also kids with asd often have constipation and this may also be a reason they don't use the toilet, they associate it with pain.
•    Anonymous said… Growing up my younger brother did this also. We discovered he had epilepsy. He would have mild seizures we didn't even notice. They were so mild. The Doctor figured that when he had a seizure was when my brother would soil his pants. He was around 16 when he stopped.
•    Anonymous said… Have him tested for coeliac and gut problems, my son had trouble toilet training because he couldn't tell the difference between gas and solids due to wheat and dairy intolerances, which is apparently quite common on the spectrum.
•    Anonymous said… he may not be able to feel it happening because of sensory issues, maybe a regular toilet time about 4 times a day to help him to try to make his movements regular? do you have a very bright or very dark toilet/bathroom? this might be an issue. Another not quite as wonderful solution might be to get him incontinence pants
•    Anonymous said… I am grateful for the question/answer, thanks to the OP for putting it out there. My 7 yr old has only been PT for about 2 years, and while we rarely leave him with a sitter, it seems that he commonly will soil his pants in the care of others. Other than this issue, he is VERY well behaved for other caregivers, but once he does this, they are not eager for him to return. We have tried showing him where the potty is, and making sure he knows it's ok to ask to use the potty and all of that stuff. Separately, the comments on the article about kids even as old as teenagers have this problem are kind of breaking my heart for them, and for our future as well.
•    Anonymous said… If this is it (very common with kids on the spectrum) please take him to see a gastroenterologist (preferably one who is familiar with spectrum issues)
•    Anonymous said… I'm so glad someone asked this I've been having nothing but obstacles with my son and training. I've got him finally in underwear through out the day and using the potty, he stands over it straddling but hey he's doing it. However he refuses to sit and go number 2. When he has to go he runs and gets a pull up. I've tried praise, tokens and even not buying pull ups but it didn't work. He's 7, non verbal and yes stubborn. Any advice??
•    Anonymous said… I'm so glad someone finally asked this. I have been largely ignored when I asked for help in other groups.
•    Anonymous said… Its soo good to hear Im not alone. My son is 9, and I really felt like I was the only person dealing with this. It makes me sad that it could last a long time. Ive tried everything the doctors/counsellars suggested. The more I push him to correct it the more he pushes back. Hes gotten to a point where he cleans himself up, and I feel like thats all I can ask for at this point..
•    Anonymous said… keep schedule of time it's happening. Help him to recognize some signs (gassy, tummy pain, timing of when to sit). The thing is, if he sits on the toilet at said times, his muscles actually help him go so a routine may work. A possible different position on the potty / one leg up or stretched out for stability and muscle help. Sensory is definitely part of the problem if he can sit in it, I would think. An OT or ABA Autism specialist may be able to help. I would make a few calls and get some suggestions. When he has a good day, don't just praise, bring out the big guns, new video game (but take it back after 30 minutes and say he gets it again when he does a good day). His favorite cake, etc. Also explain the sanitary part of good hygiene and maybe have him watch a few videos (they process this faster and better usually, because of the visuals). Some kids grab onto the "we don't like germs" part and understanding it's toxic and needs to go away. This may/may not motivate them but it's worth a try. He needs a good motivator. See if there is something that breaks it down into small steps. 1. I feel pain 2. I get gas 3. I need to go to the bathroom all the way to lastly I wash my hands for 2 minutes with soap. Breaking things down (you can type it up) helps them and the visual of it broken down into small steps. At the end write something like "I am proud of myself that I can smell fresh and clean and minimize germs by going to the bathroom myself. I am growing up and helping at beating diseases and germs." Something like that. Good luck.
•    Anonymous said… Maybe a different position over the toilet? They tend to do different body positions. Good luck!
•    Anonymous said… My 14 year old son is the same way. He says it hurts to go when he sits on the toilet but not when he stands and crosses his legs. We've tried everything. We're on a waiting list for ABA therapy and this will be the first item they tackle.
•    Anonymous said… My child has demand avoidance- so any structured plans always made him more anxious and failed. We had to stop worrying about it and make him clean up when we noticed it. (It was really a problem for a while). Then it just stopped.
•    Anonymous said… my daughter also has epilepsy and while she doesn't soil her pants, she does pee in the bed every night, she is going to be 9 and still has to wear a pull up to bed. When i ask her why she doesn't get up to use the bathroom she says she doesn't feel it when it is happening. This could be the case with your grandson, if he is having a seizure he may have no memory of it. Best of luck. I still have no solution for my daughters nighttime accidents, she doesn't have accidents in the day any longer, but sometimes she waits so long to pee, i tell her to go she says she doesn't have to, then a few minutes later she is racing to the bathroom. Best of luck to you, its never easy but we love them.
•    Anonymous said… my son does this and u know what I make no big deal it is a sensory issue and u can't treat him any different because of it. I help him clean up u know why because it's embarrassing for him and he really has no idea till I show him that it happe s
•    Anonymous said… Not sure if this is relevant due to the age difference but I had that same problem with my 4 year old. We started giving him a fiber gummy every day. If he has the gummy he goes in the potty. If he doesn't have the gummy he will have an accident. Only thing I can come up with is he must not know and the extra fiber causes more force.
•    Anonymous said… Some children have gut problems and get leakage around a hard stool which soils their pants but they can be unaware of it. a regular gentle laxative can help, it can also be used as part of a soiling programme even if there is no constipation.
•    Anonymous said… To begin with, it does no good to ask him why he does it. He doesn't know, he's communicated that to you. Would you ask a baby why he soiled his diaper? No. They do it because they don't know any better. Neither does he. My initial thought is that he is regressing due to the emotional trauma in his life. It doesn't matter how he can willingly sit in it all day. It's possible that it's a sensory issue and he likes how it feels. The point is, it doesn't matter. Regarding the shutdown when his grandfather approaches him about it. My thoughts are that he is embarrassed & he doesn't know how to communicate it. He might not even know what it is that he's feeling. He just knows it's an uncomfortable feeling and he tries to hide it. Next, you ask him if he soiled his pants. I'm thinking that he's probably associated something negative (ie, being yelled at, scolded, spanked, etc.) with soiling his pants, which is why he deflects. If I were in your shoes, & I suspected (or knew) he'd done it, I'd tell him to come with you to the bathroom, say, "Lets look in your pants, is there poop? Yup. There's poop. Ok, what do we need to do?" And then guide him through the steps of changing, showering, etc. Don't ask. Make statements, instruct him, guide him. It does no good to ask at this point. To eliminate this behavior, I'd start with a token system. Start with very short periods of time. For every 5 minutes he's clean, give him a token. When he earns 3, he gets a reward. Let him choose what he's working for. When he can go longer than 5 minutes, up it to 10, increase the number of tokens he has to have, etc., until he gets up to a day. When he goes a day, clean & dry, throw that kid a party. If he has an accident, that's ok, don't scold, it's a bump in the road. He needs encouragement, not discouragement.
•    Anonymous said… Very comman in kids with ASD. My son is the same. Has been for yrs. He is 13. X
•    Anonymous said… We did not get any help with the pediatrician. Only a referral to a behavioral clinic that was a year wait to get into and then were not the least bit helpful. You know it's a wasteland out here for that kind of assistance. Hopefully those who live in better areas have better services.
•    Anonymous said… When I worked for a Famiy Practice physician this issue would periodically come up. I would say to work with the child's doctor to come up with a plan to manage the encopresis. Eventully, I think it can be managed.
•    Anonymous said… You are doing it. Stay calm. Have him continue to change it himself. If he says no but you suspect he has, just remind him kindly that "when we have an accident we need to do our best to fix it" then maybe ask him if he remembers what to do to fix a accident in his pants. Letting him figure it out really has helped my son. He still has accidents, or walks around with poop on his hands. This a a difficult thing. You are not alone.

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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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