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Your Child on the Autism Spectrum: What the Future Holds

*** Prognosis ***

There is some evidence that kids with High-Functioning Autism (HFA) may see a lessening of symptoms as they mature. Up to 20% of kids may no longer meet the diagnostic criteria as grown-ups, although social and communication difficulties may persist.

People with HFA appear to have normal life expectancy, but have an increased prevalence of comorbid psychiatric conditions (e.g., major depressive disorder, anxiety disorder) that may significantly affect prognosis.

Although social impairment is life-long, the outcome is generally more positive than for people with lower functioning autism spectrum disorders. For example, autism spectrum disorders (ASD) symptoms are more likely to diminish with time in kids on the high functioning end of autism. 
 
Although most students with the disorder have average mathematical ability and test slightly worse in mathematics than in general intelligence, some are gifted in mathematics. HFA has not prevented some grown-ups from major accomplishments such as winning the Nobel Prize.

Kids on the spectrum may require special education services because of their social and behavioral difficulties, although many attend regular education classes. Teens with the disorder may exhibit ongoing difficulty with self care, organization and disturbances in social and romantic relationships. Despite high cognitive potential, most young adults with HFA remain at home, although some do marry and work independently.

Anxiety may stem from (a) preoccupation over possible violations of routines and rituals, (b) being placed in a situation without a clear schedule or expectations, or (c) concern with failing in social encounters. The resulting stress may manifest as inattention, withdrawal, reliance on obsessions, hyperactivity, or aggressive or oppositional behavior.

Depression is often the result of (a) chronic frustration from repeated failure to engage others socially, and (b) mood disorders requiring treatment may develop. Clinical experience suggests the rate of suicide may be higher among teens on the autism spectrum, but this has not been confirmed by systematic empirical studies.

Education of families is critical in developing strategies for understanding strengths and weaknesses. Helping the family to cope improves outcomes in these young people. Prognosis may be improved by diagnosis at a younger age that allows for early interventions, while interventions in adulthood are valuable, but less beneficial.

As one parent stated, "I keep telling my 7 year old that things may be more difficult for him than other kids but he is smarter than his brain (the best way i can describe it at his age) and that he can train his brain to over come most any obstacle. i truly believe that this is possible with a lot of hard work."
 
 


 
More resources for parents of children and teens on the autism spectrum:
 
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Kids on the Autism Spectrum and Amusement Parks: Avoiding Over-Stimulation

Amusement parks and recreational theme parks can quickly propel the high-functioning autistic (HFA) or Asperger's youngster into total overload if you, the parent, are not careful.

Your youngster may have enthusiastically anticipated the trip, but no youngster deliberately seeks the public embarrassment and humiliation of a meltdown near the exit to the roller-coaster ride because of improper planning or pacing. This “behavioral” communication (i.e., meltdown) is a last resort when all else has failed.

Going to the Amusement Park: 25 Tips for Parents—

1. At first, start slow with gentle rides, paying careful attention for signs of over-stimulation.

2. After each ride, process the experience with your youngster to gather his impressions and tolerance level. Some children absolutely relish the sensory feedback they derive from seemingly violent, whirling, spinning, upside-down-turning rides – but some don’t, and after the ride is over, they may flip into a full-blown meltdown.

3. Allow your youngster to record the highlights of your activities with a camcorder, with your youngster directing the “movie” and providing the narration, of course.

4. Appoint your youngster the responsibility of taking photographs to share with family and friends. Disposable cameras make this easy and inexpensive, even if you are also using a camera of your own.

5. At some point during the day, know that your child may need the total solitude offered by a nap or reading time in the hotel room.

6. Be aware that many amusement rides feature flashing and spinning lights that may vary in intensity or kick up in intensity once the ride starts. The concern here is that this constant “strobe light” flickering may induce a meltdown in those kids who are overly-sensitive to visual stimuli.

7. Before arriving at the park, play visual memory games about the surroundings, review the day's written agenda, and discuss what you anticipate may be experienced on the rides.

8. Consider museums. Museum may provide a calmer, slower-paced atmosphere that your youngster may find conducive to becoming absorbed in the subject matter.

9. Consider purchasing an “easy pass” or “fast pass” offered for some attractions. Learn about the rules and premium costs involved to access such a system. The passes may be available only at certain times for certain rides, which may cause you and your youngster to rearrange your schedule.

10. Create a “schedule-of-events” with your youngster before arriving at the park.

11. Engage your youngster in assisting you to prepare for attending a theme park by researching all the details (e.g., how far, mode of travel, where to stay, how much, etc.).

12. Ensure that your HFA or Asperger's youngster is clear in understanding the written rules about the ride (e.g., keeping arms and hands inside, staying seated, etc.).

13. Have a quiet lunch somewhere in order to give your child a break from the environmental stimuli (e.g., noise, congestion, etc.).

14. If the theme park is located in an area with other “spin-off” type activities and amusements on a smaller scale, consider attending one of those instead of the park.

15. If there is a way to link any of the theme park activities to one of your youngster's passions, do it! For example, if your youngster is interested in monkeys, then the nearest zoo might be a better option over some other attraction.

16. If you feel anxious about how you would feel riding a certain ride, it's probably a good measuring tool to deny your youngster admittance. As a guide, many amusement parks offer brochures that are coded to indicate appropriate age levels.

17. If your youngster becomes easily distracted by noise — especially unpredictable noises like train whistles, buzzers and bells, or other loud sounds emanating from rides — wearing an iPod and listening to favorite music will be a good survival tool.

18. In addition to scheduling downtime, it may be best to pace the sequence of activities (e.g., riding a roller coaster followed by attending the dolphin show, then on to an exhibit display before tackling another fast-paced ride).

19. Know that riding certain rides can look tempting and exciting — until you're a passenger!!! Take the time to carefully observe any ride you are considering with your youngster prior to boarding. The thrill of most amusement rides is based on surprise, fear, and strong centrifugal force. The extreme emotional and physical stimulation may be too much for your youngster to endure.

20. Make sure that your youngster (a) is hydrated with cold drinks throughout the day, (b) wears sun-block (and a hat, if tolerated), and (c) stays as comfortable as possible while waiting in very warm conditions. He may not know to express his growing discomfort or may be oblivious to it entirely.

21. Many theme parks offer a faster, alternate line for children with disabilities to quickly board rides and other amusements. Selecting this alternative may be ‘stigmatizing’ for your youngster, however many moms and dads with kids on the spectrum swear by this convenience.

22. Stick to the schedule to the very best of your ability and pay attention to your youngster for any signs that the vacation is wearing thin on him, which he may not be communicating.

23. Theme parks are notorious for large crowds and long lines. You know your youngster best and have a sense of his endurance and tolerance thresholds. Build in breaks and downtime throughout the day.

24. Waiting in line can be a frustrating exercise in patience for many children. The HFA youngster may not immediately understand why it's necessary to wait in line. It may be helpful to prepare a written story, in advance of the trip, to review with your youngster before and during long waits in line (include details about what to do and how to conduct oneself while waiting).

25. Weigh whether you think an amusement park vacation is appropriate for your youngster in the context of your family makeup.

==> Preventing Meltdowns and Tantrums in Kids on the Autism Spectrum
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Kids on the Autism Spectrum Who Spoil the Family Vacation: Tips for Parents

 "We're planning a family vacation [spring break] for the end of March. Past vacations have been super stressful due to our child's  tantrums and meltdowns (he has high functioning autism). His behavior turns what would be a very relaxing time into ...honestly, pure hell. We're almost glad to get back home so our son can get back into his usual routine (i.e., comfort zone). Any tips on how to make this next trip less of a headache?"

Some parents find it hard enough to venture out to the grocery store with a high-functioning autistic (HFA) youngster, much less go on a week-long vacation. Like most things, it takes a little planning and preparation. A youngster on the spectrum tends to react much better when he knows what to expect.

Even “neurotypical” kids (i.e., children without the disorder) tend to become irritable and frustrated in constantly changing environments, crowds, and loud noise – but for the HFA youngster, these things are magnified and can frustrate him to the point of boiling-over.

Grown-ups with the disorder tend to become withdrawn when they are over-stimulated or stressed, but HFA kids tend to externalize their stress, which often leads to a meltdown. As a parent of a youngster on the autism spectrum, you will face unique challenges when you break his normal routine. 
 

Trying the strategies below can make vacations easier for both you and your son:

1. Always travel with comfort food and toys. “Toys” is a broad ranging term, meaning anything from stuffed animals for your youngster to an iPod for your husband.

2. Prepare to be flexible. Even the best laid plans can go awry, especially with an HFA child as part of the group. You were going to have a great family reunion, and then your youngster had a meltdown. That's ok! Just tell the family "Randy isn't feeling well, and we'll need to take off early." Head back to Hotel, put on a video, and kick back. After all, it's your vacation, right?

3. Bring your routine along. As much as possible, attempt to stick to your youngster's normal home routine while you are away. When you must break the routine, make sure to prepare your youngster in advance for what is to come.

4. Check into the all the possibilities. You may have decided against Disneyland based on noise level or food issues. But think again. Disneyland, like many destinations, offers a variety of options for different kinds of visitors. Before you decide that a place will not suit your family, ask about special services and amenities. Research the options and find services that suit your special needs.

5. Choose "off" times for fun. Most children on the spectrum do better with quiet, low-key experiences. If it is summer and you're at the beach, hit the waves early or late in the day or year. If you're considering a theme park, wait until fall or early spring. Early Sunday morning is a great time to explore popular museums.

6. Choose your destination wisely. As you plan your vacation, choose a place that is as calm and quiet as possible. You can find plenty of quieter options that are still lots of fun (e.g., a lake) that take into account your desire for something new and different and your youngster's dislike for noisy, chaotic environments.

7. Chances are that, sometime during your vacation, you'll run into someone who will make a judgmental comment about you, your family, and your child. That someone should not be allowed to spoil your vacation. Be prepared to ignore rude comments and move on to the next activity.

8. Have a plan. Before going on vacation, think about what you will be doing and plan some activities that you know your youngster is comfortable with and will enjoy.

9. Keep it simple. Don't plan too much for any one day, and remember that this is vacation. Try not to make plans that can't be changed if your child has a tough day.

10. Keep your sense of humor throughout the trip.
 

11. Look for special hotel accommodations. When selecting a hotel, think about what special amenities (e.g., an in-room refrigerator and dining area) might make your youngster more comfortable. Be sure to put in your requests in advance at the time of your booking.

12. Make a memory. Take pictures of the event and work with your youngster to make a book of pictures that can help your youngster remember the things that you did.

13. Pack familiar things. Bring some familiar things from home, such as favorite bedding or a personal DVD player, to make your youngster more comfortable.

14. Bring earplugs and snacks for plane trips, music and picnic food for car trips, and portable music and video for all long-distance travel.

15. Practice beforehand. In the days and weeks leading up to the event, use role-play and rehearsal to let your youngster practice and learn how to deal with the upcoming social situations.

16. Tools like visual planners and social stories can make all the difference to your youngster's experience. If you're going back to a place you've been before, make a memory book from last year's photos. If not, use the Web to find images from Google or tourism websites. You can also create a personalized "social story," describing the whats, wheres, whos and whens of your planned vacation.

17. Relax. If you are stressed, your youngster will sense it. So stay calm and relax as much as possible so that you can enjoy yourself and decrease your youngster's anxiety.

18. Structure your days. It's true that vacations are supposed to be opportunities to kick back and take things as they come. For a child with HFA, however, unplanned time can be extremely stressful. That doesn't mean a planned activity for every hour of the day, but it does mean a daily structure.

19. Travel during less-crowded times. Instead of taking a flight at the same time everyone else does, book an off day or during low season to reduce stress and receive more attention and service.

20. Consider shorter vacations. Rather than going on the traditional week-long excursion, consider a “weekend get-away” or a 4-day trip. Why go away for 7 days if the last 3 days are going to be pure hell.

It may not be effortless to enjoy a vacation when your youngster has an autism spectrum , but with some planning and adjustments, you can make these occasions memorable events that your whole family can enjoy.


COMMENTS:

•    Anonymous said... Can you get a disability pass from Disney for a child with ADHD and Aspergers? I doubt my son will tolerate the lines so, I was hoping to get a pass to cut the time down.
•    Anonymous said... I learned last year onour trip to Universal that my boys need to know what is going to happen on amusement park rides to help with their anxieties about them. We are planning a trip to Disney next year and I plan on researching the rides beforehand. I want to have detailed descriptions of them so that my sons can look over them so they will have an idea of what is coming.
•    Anonymous said... I've learned I have to tell my son ahead of time before we go anywhere. He needs to know where we are going and why. I also try to give him an estimate of how long it should take. Giving him something to do like "can you put the items in the cart when we find them" is another good thing to keep his mind on a task instead of just dreading his walking way through a store for 20 minutes.
•    Anonymous said... We are wanting to go camping this summer, so we are preparing our son by going on short outings to where we want to camp, and making each trip there a little longer. We are also finding out what we will need to bring for him as entertainment as well, with each trip we take we learn more Hope you all have a wonderful summer!

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Trouble-Shooting for Defiant Behavior in Autistic Teens

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Children on the Autism Spectrum: How Parents Can Provide Communication-Skills Training

If you have a child with High-Functioning Autism (HFA), one of his or her greatest challenges is in the area of communication...

As a parent, you will want to (a) communicate in ways that will support your youngster's ease of understanding, and (b) discover how best to assist your youngster in deciphering communication in everyday conversation. Your youngster wants to be socially accepted by his peers and others, and your efforts to foster a mutual comfort level where communication is concerned will be critical in achieving this goal.

How to help your child develop communications skills:

1. Accept your youngster's (a) “ballpark” approximation of direct eye contact if he stares at your ears, mouth, or some area of your face other than your eyes while you are talking, (b) his need to look away from your eyes in order to formulate a thoughtful, articulate response, and (c) his need to make fleeting eye contact, look away, and then look back.

2. Allow for process time in between steps of instruction. After you've finished talking, give your youngster a chance to ask clarifying questions. Also, ask your youngster if he's ready for more information before going on to the next piece of instruction.

3. Allow your child to make liberal use of the computer. Computers are a tremendous benefit to kids with HFA. The computer is liberating because your youngster is free from social pressures with regard to immediacy of response, body language, facial expressions, personal space issues, and eye contact in conversation.

4. As part of “communication-skills training,” request your youngster to model his recall of others' body language and facial expressions, or model them yourself and ask, “Is this what you saw?”

5. Be cautious about over-loading your youngster with too much information all in one shot. As your youngster's mother or father, you will be able to best gauge how much or how little your youngster can absorb at once.
 

6. Because your youngster will probably interpret others' communications in a very literal sense, he will expect you to do the same. So in communicating with your youngster, do what you say you're going to do by keeping your promises — you'll be held to it!

7. Before giving your youngster instruction, ask him to prepare to make pictures or movies of what you're conveying. Check back on this during your communication by saying something like, “Can you see it?” or “Do you see what that's supposed to look like?”

8. Counsel your youngster in the nuances of neurotypical (i.e., non-autistic) behavior, especially as he enters his teen years (a time when children rely less on their moms and dads and interact with greater social freedom).

9. Develop a written list of key phrases that your youngster can use as a socially acceptable entry into conversation (e.g., “Hey, what's up?” … “What's new with you?” … “What did you do over the weekend?” … “What did you watch on TV last night?”).

10. Ensure your youngster's understanding of what you've communicated by asking him to describe what you've just said.

11. For your youngster, getting the “hang of” people may just come harder and require more effort to understand. The goal isn't one of mastery, but of knowing just enough to get by and be okay.

12. If you must break a promise, apologize to your youngster as soon as possible and let him know precisely when you will fix the situation or make it right.

13. If your youngster tends to have a flat affect, you may be unable to tell through body language or facial expressions if he understands what you have said — even if he says he does.

14. Know that your youngster may be challenged when interacting with peers and others because he: (a) doesn't understand how to maintain personal space, (b) has difficulty understanding the rhythmic flow (i.e., “give and take”) of conversation, (c) has trouble deciphering people's body language, (d) is brutally direct and honest, which may be offensive to others, and (e) talks off topic or interjects information that doesn't fit the moment.

15. Many kids with HFA will not be as successful as they could be when given instruction if they are required to make direct eye contact while you deliver your instruction. Many moms and dads demand direct eye contact from their neurotypical kids by saying something like, “Look at me when I'm talking to you!” But for the youngster on the autism spectrum, NOT making eye contact will help him retain information much better. The youngster with HFA who appears not to be listening may be taking in all – or nearly all – of what you are saying, as opposed to the youngster who is compelled to make direct eye contact to “prove” he is paying attention.

16. Most kids on the spectrum are visual thinkers (i.e., they think in constant streams of images and life-event “memory” movies). This way of thinking is a flowing, seamless, and natural manner of thought for many of these children.

17. Reinforce that it is always considered acceptable to politely request that someone repeat what they've said, or ask for clarification by simply stating, “I don't know what you mean. Can you please say it another way?”

18. Slow down and carefully measure the amount of information you dispense to your child in order to avoid confusion. If your youngster is unable to visualize what you verbally communicate, he is less likely to retain it.

19. Slow the pace of your instruction — especially if it's about something new and different. Also, rethink what you intend to communicate. Can it be simplified?
 

20. Sometimes you will want to simply abandon all expectations of trying to understand what just happened in favor of providing a gentle hug or allowing your youngster to have a good cry or personal space to temporarily shut down. These “unspoken” communications may have as much, if not more, impact than your verbal communications in the moment.

21. The youngster with an autism spectrum disorder says what he means and means what he says (e.g., ‘no’ means ‘no’ and ‘yes’ means ‘yes’). Your youngster's anxiety and frustration will likely escalate if you repeatedly ask the same question or ask him to change his mind without explanation.

22. Your child’s idea of communication to others, or expressive language, may be skewed from what is considered the norm. Try “debriefing” social situations that were confusing or upsetting to your child by privately, gently, and respectfully deconstructing them portion by portion.

23. Try reaching your youngster with pressing questions and concerns by sending him an email (you may get a reply that will surprise and enlighten your own understanding of the situation at hand).

24. Try videoing at family gatherings, picnics, parties, while playing games, or some other activity, and then use the video as “communication-skills training” to deconstruct your child’s social interactions (do this as naturally as possible; if your youngster knows you are singling him out, he may “overact” and play to the camera).

25. Know that your youngster may be quite challenged in his ability to process receptive language (i.e., understanding what others are communicating). You may be frustrated by his apparent unawareness of the social repercussions of interrupting or saying something with brutal directness.

More resources for parents of children and teens on the autism spectrum:
 
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Special Considerations When Disciplining Your Child on the Autism Spectrum

"I hate Hate HATE that I run low on patience with my child (high functioning autistic)! I'm trying to be more patient every moment of every day. In my heart I wouldn't change a single thing about him. He didn't do anything to deserve having an autism spectrum disorder. Sometimes it just seems so unfair. In any event, how can I discipline him in a way that's effective such that (a) we don't have to keep trying to solve the same problem over and over again, and (b) I don't lose my patience with his slow progress? ~ Signed, bad dad :( "

Most of us as parents of kids with high-functioning autism (HFA) and Asperger's have been so annoyed and frustrated by certain events that we lost our temper - and our sanity (for a moment).

Teaching and correcting a youngster on the autism spectrum requires balancing a number of considerations. As a father, you have the right to set the same rules as you would for any of your other kids. But you also have the responsibility to ensure you are being fair in communicating your boundaries so you can expect your HFA youngster's compliance. To discipline fairly, you will need to first know that you have communicated fully your rules in ways your youngster understands best.
 

Disciplining Kids on the Autism Spectrum:

1. A list of rules should become your youngster's property and, depending upon the situation, should be kept in his pocket for ready reference.

2. Be cautious about going to extremes. You have every reason to be a strong advocate on behalf of your youngster and in protection of his rights, but this does not exempt him from being disciplined by you, the parent.

3. Because your youngster is inherently gentle and sensitive, he may be particularly prone to being vulnerable (i.e., he may be more susceptible than neurotypical children to experiencing problems in communication and social interaction).

4. Before you discipline, be mindful that your youngster's logic will not necessarily reflect your idea of common sense.

5. Disciplining your youngster should be a teaching and learning opportunity about making choices and decisions. When your youngster makes mistakes, assure him that he is still loved and valued.

6. Don’t assume your son will understand appropriate social behavior under a wide variety of specific circumstances and, when that doesn't occur, discipline in the moment.

7. Look for small opportunities to deliberately allow your youngster to make mistakes for which you can set aside “discipline-teaching” time. It will be a learning process for you and your youngster.
 

8. Never assume your youngster will automatically transfer and apply information previously learned in one environment to a new situation that, in your mind, is remarkably similar. For the child on the spectrum, a new situation is a new situation.

9. Some moms and dads can become over-protective of their HFA child (i.e., the youngster gains more and more control while being protected in a sheltered environment with little to no discipline). They may make frequent excuses for their youngster's words or actions, and they may not discipline where most others agree it to be warranted. Don’t make this mistake!

10. Understand that your son (a) needs to feel safe, comfortable and in control, (b) will become unhinged by anything significantly unpredictable, (c) is doing the very best he knows how to in the moment with what he's got available to him, and (d) has good reasons for doing what he's doing.

11. You have the responsibility to be fair in how you communicate rules and expectations. Because your youngster will be most open to receiving this information in ways that are literal and concrete, this means making it tangible (e.g., put it in writing as a simple, bullet-point list).

12. Your approach to discipline should mostly be one of prevention – not intervention.

13. Your youngster may take personally criticisms you think mild or trivial. If you are a parent short on patience and prone to critical or sarcastic comments, be prepared for your youngster to withdraw from you more and more until you are shut out completely.

14. Your son's diagnosis is a label that describes a small piece of who he is as a human being. Your youngster is many other things. His diagnosis does not exclusively define him.

15. Your youngster's need to feel in control should not be taken to extremes. Moms and dads must set limits and expectations for all kids. Having HFA does not give one free rein to be out of control, and that should not be endorsed or indulged by you, the parent.

In order to effectively discipline the child on the spectrum, you will need to comprehend each of the factors above and fully place them in the proper context of any given situation. This knowledge will aid you in laying a foundation for “prevention” (rather than having to switch to “intervention”).

 
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Children on the Autism Spectrum Who Suffer with 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 making significant headway. 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 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.

 
More resources for parents of children and teens on the autism spectrum:
 
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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.
•    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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