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

Education and Counseling for Individuals Affected by Autism Spectrum Disorders

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Remarkable Traits That Your Child on the Autism Spectrum Has That “Typical” Kids May Not Have

In the social world, there is not a huge benefit to a precise eye for detail; however, in the worlds of cataloguing, computing, engineering, linguistics, math, music, and science, such an eye for detail is crucial.

The genes for Asperger’s (AS) and High-Functioning Autism (HFA) include a combination of abilities that have operated throughout recent human evolution and have made remarkable contributions to human history.

Here are just a few of the “abilities” associated with AS and HFA (i.e., a low central coherence cognitive style):

1.    Visual, three-dimensional thinking – most people on the autism spectrum are very visual in their thought processes, which lends itself to countless useful and creative applications.

2.    Logic over emotion – although people with AS and HFA are very emotional at times, they spend so much time ‘computing’ in our minds that they get quite good at it, and they can be very logical in their approach to problem-solving.

3.    Internal motivation – they are motivated internally, as opposed to being motivated by praise, money, bills or acceptance - which ensures a job done with conscience and with personal pride.

4.    Independent, unique thinking – people on the spectrum tend to spend a lot of time alone and will likely have developed their own unique thoughts as opposed to a ‘herd’ mentality.

5.    Honesty – the value of being able to say “the emperor isn’t wearing any clothes.”

6.    Higher IQ – some experts say that those with AS and HFA often have a higher than average general IQ.

7.    Higher fluid intelligence – scientists have discovered that AS and HFA kids have a higher “fluid intelligence” than neurotypical kids, which is the ability to (a) find meaning in confusion and solve new problems, and (b) draw inferences and understand the relationships of various concepts, independent of acquired knowledge.

8.    Focus and diligence – the AS or HFA person’s ability to focus on tasks for a long period of time without needing supervision or incentive.

9.    Attention to detail – sometimes with painstaking perfection!

Kids with AS and HFA are a varied group of people who are mostly bright, funny, articulate, caring, logical, honest, and persistent – and who just happen to think and behave a bit differently.

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Highly Effective Research-Based Parenting Strategies for Children with Asperger's and High-Functioning Autism

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Do you need the advice of a professional who specializes in parenting children and teens with Autism Spectrum Disorders?  Sign-up for Online Parent Coaching today.

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Your Child on the Autism Spectrum: What the Future Holds

*** Prognosis ***

There is some evidence that kids with Asperger's (AS) and 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 AS and 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. AS and HFA have 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 AS and 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."

==> How to Prevent Meltdowns and Tantrums in Children with Aspergers and HFA

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

Kids on the Autism Spectrum Who Spoil the Family Vacation: Tips for Parents

 "We're planning a family vacation for the end of this month. 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) or Asperger's 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!

Please post your comment below…

Trouble-Shooting for Defiant Behavior in Autistic Teens

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

If you have a child with High-Functioning Autism (HFA) or Asperger's, 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 Asperger's. 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 and Asperger's 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 with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

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 or Asperger's 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”).

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

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 Aspergers and 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 with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Highly Effective Research-Based Parenting Strategies for Children with Asperger's and High-Functioning Autism

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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. 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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Why Some Parents Don't Pursue a Formal "High-Functioning Autism" Diagnosis for Their Child

 "We suspect our 4 year old (Ryan) may have a form of autism, but my husband is reluctant to get a diagnosis for him for fear that it will cause more problems than it solves. What say you? I'm torn on this issue! I want to do what's best."

Because the symptoms of High-Functioning Autism (HFA) and Asperger's can be subtle, moms and dads may not recognize any differences in their youngster until he is age three or older. Pursuing a formal diagnosis is a family's individual decision to make.

There is no “correct” time to form this decision, although many parents agree that they wish to know their youngster's diagnosis definitively and as early in their youngster's development as possible.

If you are discovering that the criteria for HFA might have application for your youngster, then you are faced with a decision about seeking a diagnosis. You may NOT wish to pursue a formal diagnosis at this time for one or more of the following reasons:
  • You are scared or in denial of the situation
  • You are worried that your youngster will be stigmatized or singled out
  • You don't believe in labeling people's diversity
  • You don't feel that your youngster's differences are causing detriments in his life significant enough to obtain a diagnosis
  • You'd rather wait to see if anything changes as your youngster continues developing

The benefits of obtaining a diagnosis may be:
  • Accessing a system of services and supports designed to give your youngster a head start in life as early as possible
  • Being able to educate family, friends, and neighbors about your youngster's unique way of being when appropriate
  • Being able to educate your youngster in order to promote self-awareness and self-advocacy, as needed
  • Being able to put a name and a framework to a collection of symptoms and traits instead of perceiving it all as your youngster's “bad behavior” or somehow your fault
  • Understanding and appreciating sooner your youngster's lifelong unique qualities, personal needs, and talents

Grown-ups with the disorder who were never diagnosed as kids often ask, “Would it have been helpful to have had the diagnosis at an early age?” We are still a long way from effectively understanding autism spectrum disorders in a global sense, but having this knowledge early on in the lives of many adults could have aided them to:
  • Avoid struggles with mental health issues, or be better prepared to care for one's mental health
  • Be better able to initiate and sustain relationships
  • Be better equipped to locate viable employment opportunities that best match skills and talents
  • Be better prepared for higher education, or trade school
  • Be better prepared to avoid situations in which one may be unwittingly exploited
  • Experience greater success in school

A group of children with an autism spectrum disorder was asked a question: “Is it helpful to know you have it?” They were unanimous in explaining that it was helpful and cleared up a lot of misinterpretations people had about why they do what they do.

If you determine that HFA best describes your youngster's way of being and are interested in pursuing a diagnosis, your first course of action is to seek a referral to the appropriate clinician most qualified to make the diagnosis.

Dealing with Negative Emotions When You Discover Your Child Has an Autism Spectrum Disorder

When parents first discover that their child has an Autism Spectrum Disorder, they may experience an emotional struggle that looks something like this:
  • Denial: "Surely the doctors have misdiagnosed my child. He may be a little odd, but I have a hard time believing he has some kind of disorder."
  • Anger: "Why is this happening to me? What did I do to deserve this."
  • Bargaining: "Maybe there's a cure!"
  • Depression/Guilt: "I must have done something to make this happen."
  • Anxiety: "I don't even know where to start in dealing with this."
  • Acceptance: "This could be much worse than it is. I think I'll be able to handle it."

It's natural for moms and dads to get angry with themselves, each other, teachers, doctors, and even the child himself. Parents are trying to make sense of what has happened.

Moms and dads need to allow themselves to experience whatever emotions they are having. It's all part of adjusting to the challenges ahead. Trying to deny or minimize how hard it is to have a child with an Autism Spectrum Disorder only prolongs the fear, frustration and anxiety.

No matter how much you do for - and with - your Aspergers or high-functioning autistic youngster, you're probably going to feel some guilt. In part because no one knows what causes or cures this disorder -- so anything you did could be at fault (according to some theorists), and anything you do could help. But guilt can be crippling and can even get between you and your ability to be your best parent. The following tips may help you to take a deep breath and set guilt aside, at least for a moment:

1. Guilt-induced thought: "I can't leave any stones unturned!"

What if that new therapy you just read about was THE therapy -- the one that would have cured your youngster if only you'd tried it? No one wants to think they denied their youngster a cure for a lifelong disability. But remember that one-on-one time with a loving adult is always a plus -- and it's unlikely that that new high-tech "cure" is the next penicillin!

2. Guilt-induced thought: "I should be learning more about the disorder!"

There's always more to learn. And if you live in a metropolitan area, there are always seminars, support groups and events to attend. But there's more to life than autism -- and it might make sense, just for once, to hire a sitter and go to the movies with your "significant other!"

3. Guilt-induced thought: "I should be making time for my other children and my spouse!"

If you're the primary caregiver for a youngster with Aspergers or high-functioning autism, you may be too overwhelmed to give other family members the time and attention they crave. While it really is important to make time for others in your life, it's also ok to ask for a few minutes to regroup...take a walk...or otherwise clear your mind. Your children and spouse deserve your focused attention -- something that's tough to give when you're still in "therapy mode!"

4. Guilt-induced thought: "I should be pushing for more _____ (fill in the blank) for my youngster!"

Depending upon what you read or who you listen to, you'll hear conflicting advice about what your youngster needs. More inclusion or less inclusion; more or different therapies; more or different activities, play dates, and so on forever. But even a typically developing youngster can get overwhelmed -- and youngster on the autism spectrum needs fewer transitions, less intensity and more structure than most. Maybe you do, too...!

5. Guilt-induced thought: "I should be spending this money on therapy!"

You broke down and bought that new jacket -- and now you wonder why you didn't spend the money on therapy... books on autism spectrum disorder ...learning toys ...or something else for your "special needs" youngster. But he or she is only one member of your family. You worked hard for your money, and your youngster will never miss that one extra session of therapy!

6. Guilt-induced thought: "I should be spending this time on therapy!"

You picked up a book while your youngster was watching TV -- and now you feel guilty. After all, every second counts, and you should be engaging him all day long. It's a nice idea, but even supermom can't be on call for her youngster 18 hours a day and still stay sane and healthy. Remember that your health and welfare count too!

7. Guilt-induced thought: "I should be working faster!"

Publicity about the importance of early intervention has caused a panic among moms and dads. The suggestion is that there's a window of opportunity early in life -- and that that window closes sometime around age three. The truth is, though, that children (and even adults) continue to develop and grow. While early intervention is important, it's not the only key to your youngster's ongoing success!

8. Guilt-induced thought: "I should give up more for my youngster!"

It's true that some families give up everything for their autistic youngster. They mortgage their homes, give up their careers, and end any "extras" to pay for therapies. This is, of course, a valid choice. But not every Aspergers youngster needs such a high level of commitment to thrive and grow. Your decision needs to take into account not only your youngster -- but you, your spouse, and the life you've chosen together.

9. Guilt-induced thought: "I somehow caused this problem!"

We know autism can't be caused by a lack of love. But was it that tuna you ate when you were pregnant? The vaccines you allowed your pediatrician to give your youngster? Since we don't know what causes the disorder, it can be easy to decide it was your fault. Chances are, though, that genetics -- something you can't control -- plays a significant role!

10. Guilt-induced thought: "Other people do more for their "special needs" youngster!"

And other people are thinner, fitter, richer and have bigger homes too! Comparing yourself to other families can be helpful if those others offer support and ideas -- but it can be destructive if it leads to a constant sense of guilt.

11. Guilt-induced thought: "I'm probably making a bad problem worse since I don't know about autism spectrum disorders."

You are not in this situation because you are a bad parent or lack the skill in raising a son or daughter. You may lack some of the skills necessary for raising a youngster on the spectrum, but this is not surprising given the level of complications that kids with the disorder may bring.

12. Guilt-induced thought: "I don't know if my child will be able to make it out there in the real world as an adult." Your child has a purpose in this life. And since the autism-package comes with strengths -- not just challenges -- you can expect to see your child do great things someday.


More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Highly Effective Research-Based Parenting Strategies for Children with Asperger's and High-Functioning Autism

How to Improve the Self-Image of a Child on the Autism Spectrum

 "Any tips on how to help my newly diagnosed daughter (high functioning autistic) to improve her self esteem. She thinks she's 'stupid' ...she thinks she's 'ugly' ...she thinks nobody likes her... I don't know where she's coming up with these negative evaluations of herself, but it breaks my heart. We are all a bit anxious since we got the news about this disorder. But how can I help my daughter have a better perspective of her true self and her strengths?"

The diagnostic criteria for High-Functioning Autism (HFA) or Asperger's can be intimidating to moms and dads with kids who are newly diagnosed. The traits attributed to children on the spectrum can set a negative tone because of the focus on “disabilities” rather than abilities. Thus, parents should temper this information with a balanced perspective. The youngster has much to offer in the form of gifts and talents, and the attitude with which parents receive these “abilities” will directly influence his or her self-image.

Some mothers/fathers despair when they receive their youngster's diagnosis. Parents and the HFA child's siblings may perceive the diagnosis as hopeless or something that induces shame. Their rationale may be driven by several factors:
  • Conflicting pressures about proper child-rearing from family, neighbors, or friends
  • Conflicting pressures about proper intervention and support from doctors and other professionals
  • Insensitive presentation by a physician who focuses on disabilities
  • No access to literature or other educational materials that present a balanced perspective
  • No opportunities for contact with families in similar situations who are actually enjoying their HFA youngster
  • No previous exposure to people with differences who live well-adjusted, content lives
  • Projected anxieties about the youngster's future lack of independence and failure in adult life
  • Rumors and stereotypes about people with differences, including HFA

Some people have described HFA as “a neurological malady that dooms many of its victims to a lonely life and dead-end jobs despite higher-than-average intelligence.” When parents believe such upsetting, unrealistic stereotypes, anxiety around the diagnosis will naturally increase within the entire family. These and other negative stereotypes should never be projected on the child or communicated directly in front of her. Otherwise, a self-fulfilling prophecy can easily manifest itself (i.e., the child may come to believe that he/she is truly destined to be friend-less and job-less).

If an HFA child hears grown-ups refer to her only in negative terms, she believes it and, eventually, she becomes it. Being a sensitive child (as HFA children tend to be), she may naturally internalize, replay, and agonize over her “traits.”

Self-esteem is a powerful predictor of success. Not all HFA children have problems with social competence and self-esteem, but many do, and struggling daily with the challenges posed by having an Autism Spectrum Disorder can erode the enthusiasm and confidence that make learning fun. Knowing one's assets and liabilities, and feeling good about one's self can be an invaluable tool for negotiating the sometimes tumultuous path to achievement in school, success in the workplace, and acceptance at home and in the community at large.

Positive self-esteem is as important to success in school and on the job as the mastery of individual skills. And there's no question that doing something well helps a child feel better about himself, his accomplishments, and his potential to succeed in the future. Autism Spectrum Disorders, however, often pose formidable hurdles to positive self-esteem, and these in turn contribute to a hard-to-break cycle of self-doubt, frustration and failure.

Self-esteem can be described as how we think of ourselves and view ourselves in the context of our surroundings. Students in school have self-esteem shaped by how well they get along with peers and teachers. They are constantly making judgments about how "good" they are in comparison to their peers. Self-esteem is also shaped by how well children negotiate relationships with parents and siblings, and how successful they are in understanding and responding to many ever-changing interpersonal demands across many different settings. It is precisely in these areas that HFA children have the greatest difficulty, thus contributing to feelings of inadequacy and low self-esteem.

Threats to Self-Esteem in Kids on the Autism Spectrum—

While there is no menu of characteristics that captures the threats to self-esteem in HFA children, there are a number of traits frequently observed in the child that contribute to feelings of low self-worth. A few of the factors that seem to impact self-esteem in some HFA children in negative ways include the following:
  • assumes a posture of "learned helplessness" (i.e., they assume that because they struggled with something in the past, there is little they can do to change a negative outcome in the future, so they may stop trying and hope for the best)
  • believes that outcomes are controlled by external influences (e.g., luck, chance, fate) rather than as a result of their own internal efforts
  • has difficulty judging when it is his/her turn to participate in a conversation
  • has great difficulty knowing how he/she fits in to a peer group, which often results in 'hanging back' or being a passive (rather than active) participant in activities
  • has limited success "self-marketing" and getting noticed in positive ways within a peer group
  • has limited vocabulary or difficulty retrieving the right words for the situation
  • has trouble with topic selection and knowing when to stop a conversation
  • is a poor self-observer and has trouble sizing up and reflecting upon what is going right (and wrong) during social interactions 
  • is frequently (albeit not intentionally) the target of spoken and unspoken messages of disappointment and lowered expectation by parents and others
  • is less likely than peers to use gestures and demonstrations when sharing information 
  • is more likely to repeat rather than clarify when asked to expand upon an explanation
  • is repeatedly confronted with messages of low expectations for academic achievement by teachers and parents
  • is viewed as having diminished potential for success, even with services and support in school and at home 
  • is weak in verbal pragmatics (i.e., fitting the use of language to social situations, for example, not knowing when or how to laugh without offending the listener)
  • may have problems with visual spatial planning and self-regulation, resulting in difficulties judging how close to stand to someone during conversation, how to assume and maintain a relaxed posture, and when it might be appropriate to touch 
  • may misinterpret feelings and emotions of others and not realize when their behaviors are bothersome or annoying
  • not sure how to understand or explain personal strengths and weaknesses to others
  • perceives self as less popular and more frequently rejected or ignored by peers (sometimes resulting in further self-imposed isolation) 
  • seems to be overly egocentric and not interested in the responses of other speakers (when nothing could be further from the truth)
  • talks around a topic and provides less critical (and more extraneous) information in response to a question

How Parents Can Help—

How can a parent help to foster healthy self-esteem in a youngster on the autism spectrum? These tips can make a big difference:

1. Be a positive role model. If you're excessively harsh on yourself, pessimistic, or unrealistic about your abilities and limitations, your youngster may eventually mirror you. Nurture your own self-esteem, and your youngster will have a great role model.

2. Be spontaneous and affectionate. Your love will go a long way to boost your youngster's self-esteem. Give hugs and tell children you're proud of them. Pop a note in your youngster's lunchbox that reads, "I think you're terrific!" Give praise frequently and honestly, without overdoing it. Children can tell whether something comes from the heart.

3. Build your youngster's sense of connectiveness. Physical touch and loving words from moms and dads are the first step.

4. Build your youngster's sense of uniqueness. Kids need to feel that others think they have special qualities and talents. Find opportunities to point these out to him.

5. Create a safe, loving home environment. Children who don't feel safe at home will suffer immensely from low self-esteem. A youngster who is exposed to moms and dads who fight and argue repeatedly may become depressed and withdrawn.

6. Deal with failure. If the youngster fails, he should not feel a failure. Teach your youngster that failure is only a temporary setback on the road to success.

7. Encourage your youngster's curiosity, creativity, and imagination. Teach him to satisfy curiosity with learning and convey the joy of learning in everything you do.

8. Give him responsibilities in the family and allow his input into decisions that affect him.

9. Give positive, accurate feedback. Comments like "You always work yourself up into such a frenzy!" will make children feel like they have no control over their outbursts. A better statement is, "You were really mad at your brother. But I appreciate that you didn't yell at him or hit him." This acknowledges a youngster's feelings, rewards the choice made, and encourages the youngster to make the right choice again next time.

10. Help children become involved in constructive experiences. Activities that encourage cooperation rather than competition are especially helpful in fostering self-esteem. For example, mentoring programs in which an older youngster helps a younger one learn to read can do wonders for both children.

11. Identify and redirect your youngster's inaccurate beliefs. It's important for moms and dads to identify children' irrational beliefs about themselves, whether they're about perfection, attractiveness, ability, or anything else. Helping children set more accurate standards and be more realistic in evaluating themselves will help them have a healthy self-concept. Inaccurate perceptions of self can take root and become reality to children.

12. Let your youngster express himself in his own way. Show respect for his thoughts and feelings so he will learn to do the same.

13. Provide a broad range of experiences for your youngster so he will have more confidence in facing new experiences. At the same time maintain structure and order in your day-to-day life.

14. Provide many opportunities for him to practice new skills he learns. Teach him to cope with failure by analyzing it, setting reasonable standards, and not overreacting.

15. Provide opportunities for him to feel that he is a functional and important member of his family, school class, group of friends, sports team, church, neighborhood, and community.

16. Teach him good problem-solving and decision-making skills. Teach him to prioritize, think about consequences, and plan a course of action.

17. Teach your youngster good social and conversational skills by modeling, direct teaching, and guided practice. These skills will enable him to have positive interactions with others.

18. Teach your youngster to set minor and major goals. Be specific in your expectations and the standards and consequences for his behavior.

19. Tell him your family stories and talk about his ancestors, heritage, and nationality in a positive way.

20. Watch what you say. Children are very sensitive to moms and dads' words. Remember to praise your youngster not only for a job well done, but also for effort. But be truthful. For example, if your youngster doesn't make the soccer team, avoid saying something like, "Well, next time you'll work harder and make it." Instead, try "Well, you didn't make the team, but I'm really proud of the effort you put into it." Reward effort and completion instead of outcome.

Your child will rely on you to provide a solid foundation of self-worth. Equipped with healthy self-esteem, she will be better prepared to enter into a life that will likely present many challenges.

Think of the areas in which your youngster is naturally gifted:
  • Does she have the quiet reverence to render amazing watercolors?
  • Does she enjoy describing the exact alignment of the solar system's planets, identifying each by correct name, placement, and color?
  • Does she assume the personality traits of a favorite cartoon character with uncanny accuracy, down to mimicking lines of dialogue?
  • Does her comprehension of computer programs exceed that of many adults?

At every opportunity, reinforce to your child how special she is to you. Tell her that you are delighted when she shares her astronomy charts with you. Highlight your youngster's talents when talking with family and friends. Prominently display her works of art. You will be surprised at the long-lasting impact these moments will have as you mold your child into young adulthood.

The autistic youngster instinctively wants to be good, to fit in, and to be just like other children. She will be best poised to do that if she feels safe and comfortable in knowing there is a place where she is unconditionally loved and understood.


More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

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