Children on the Autism Spectrum and Bed-wetting

Nocturnal enuresis (bed-wetting) is one of many issues Aspergers (AS) and High-Functioning Autistic (HFA) kids face. In comparison, it is likely a less important problem, but a problem nonetheless. Many of these young people have trouble with nocturnal enuresis, because they have difficulty in toilet training.

Why the difficulty in toilet training? A number of factors are involved:

• Kids on the autism spectrum are not good at imitation, which makes the process of potty training more difficult.
• Some do not even feel the wetness of the bed, which can complicate the training methods to help them overcome nighttime bed-wetting.
• Many of these children are also hypotonic, which is a condition that includes a lax form of muscle control as well as a failure to respond or recognize stimuli (e.g., the need to urinate).

By age 5, nocturnal enuresis remains a problem for about 15 percent of AS and HFA kids.

Causes—

No one knows for sure what causes nocturnal enuresis, but various factors may play a role:

• Hormone imbalance. During childhood, some children don't produce enough anti-diuretic hormones (ADH) to slow nighttime urine production.
• Small bladder. Your youngster's bladder may not be developed enough to hold urine produced during the night.
• Structural problem in the urinary tract or nervous system. Rarely, nocturnal enuresis is related to a defect in the youngster's neurological system or urinary system.
• Chronic constipation. A lack of regular bowel movements may make it so your youngster's bladder can't hold much urine, which can cause nocturnal enuresis at night.
• Diabetes. For a youngster who's usually dry at night, nocturnal enuresis may be the first sign of diabetes. Other signs and symptoms may include passing large amounts of urine at once, increased thirst, and fatigue and weight loss in spite of a good appetite.
• Inability to recognize a full bladder. If the nerves that control the bladder are slow to mature, a full bladder may not wake your youngster — especially if your youngster is a deep sleeper.
• Sleep apnea. Sometimes nocturnal enuresis is a sign of obstructive sleep apnea, a condition in which the youngster's breathing is interrupted during sleep — often because of inflamed or enlarged tonsils or adenoids. Other signs and symptoms may include snoring, frequent ear and sinus infections, sore throat, and daytime drowsiness.
• Stress. Stressful events — such as becoming a big brother or sister, starting a new school, or sleeping away from home — may trigger bed-wetting.
• Urinary tract infection. A urinary tract infection can make it difficult for your youngster to control urination. Signs and symptoms may include bed-wetting, daytime accidents, frequent urination, bloody urine and pain during urination.

Risk factors—

Several factors have been associated with an increased risk of nocturnal enuresis, including:

• Attention-deficit/hyperactivity disorder (ADHD). Nocturnal enuresis is more common in kids who have ADHD.
• Family history. If both of a youngster's parents wet the bed as kids, their youngster has an 80 percent chance of wetting the bed, too.
• Sex. Nocturnal enuresis can affect anyone, but it's twice as common in boys as girls.

Complications—

• Although frustrating, nocturnal enuresis without a physical cause doesn't pose any health risks. The guilt and embarrassment a youngster feels about wetting the bed can lead to low self-esteem, however.
• Rashes on the bottom and genital area may be an issue as well — especially if your youngster sleeps in wet underwear. To prevent a rash, help your youngster rinse his or her bottom and genital area every morning. It also may help to cover the affected area with a petroleum ointment at bedtime.

When to Call the Doctor—

Nocturnal enuresis that begins abruptly or is accompanied by other symptoms can be a sign of another medical condition, so talk with your doctor. The doctor may check for signs of a urinary tract infection (UTI), constipation, bladder problems, diabetes, or severe stress. Call the doctor if your youngster:

• begins to wet his or her pants during the day
• complains of a burning sensation or pain when urinating
• has swelling of the feet or ankles
• has to urinate frequently
• is drinking or eating much more than usual
• starts misbehaving at school or at home
• suddenly starts wetting the bed after being consistently dry for at least 6 months
• your youngster is still wetting the bed at age 7 years

Also let the doctor know if you're feeling frustrated with the situation or could use some help. In the meantime, your support and patience can go a long way in helping your youngster feel better about the bedwetting.

Preparing for a doctor’s appointment—

You're likely to start by seeing your family doctor or your youngster's pediatrician. However, he or she may refer you to a doctor who specializes in urinary disorders (pediatric urologist or nephrologist). Here's some information to help you get ready for your appointment, and what to expect from your doctor:

1. Make a list of all medications, vitamins and supplements that your youngster is taking.

2. Write down any symptoms, including any that may seem unrelated. It can also be helpful to keep a diary of your youngster's bathroom visits. Write down when your youngster goes to the toilet, as well as whether or not he or she felt a sense of urgency to urinate. Also make note of how much your youngster has had to drink, especially after dinner.

3. Write down key personal information, including any major stresses or recent life changes.

4. Write down questions to ask your youngster's doctor. For example:

• Are there any alternatives to the primary approach that you're suggesting?
• Are there any brochures or other printed material that I can take home with me?
• Are there any drinking or dietary restrictions that my youngster needs to follow?
• Are there any side effects to medications?
• Is there a generic alternative to the medicine you're prescribing?
• What treatments are available, and which do you recommend?
• What websites do you recommend visiting?
• What's causing my youngster to wet the bed?
• When might he or she outgrow wetting the bed?

Your time with your youngster's doctor may be limited, so preparing a list of questions can help you make the most of your time together. List your questions from most important to least important in case time runs out.

Your doctor is likely to ask you a number of questions. Being ready to answer them may reserve time to go over any points you want to spend more time on. Your doctor may ask:

• Does the nocturnal enuresis seem to be triggered by certain foods, drinks or activities?
• Does your youngster complain of pain or other symptoms when urinating?
• Has your youngster always wet the bed, or did it begin recently?
• How often does your youngster wet the bed?
• If you're divorced, does your youngster live in each parent's home and does the nocturnal enuresis occur in both homes?
• Is there a family history of bed-wetting?
• Is your youngster dry during the day?
• Is your youngster facing any major life changes or other stresses?

Try to be patient and understanding with your youngster. Nocturnal enuresis is a source of anxiety and frustration for your youngster. He or she isn't wetting the bed on purpose. While you're waiting to see the doctor, try limiting the amount your youngster drinks in the evening.

Tests and diagnosis—

Your youngster will need a physical exam. Depending on the circumstances, urine tests may be done to check for signs of an infection or diabetes. If the doctor suspects a structural problem with your youngster's urinary tract or another health concern, your youngster may need X-rays or other imaging tests of the kidneys or bladder.

Treatments and drugs—

Most kids outgrow nocturnal enuresis on their own. If there's a family history of bed-wetting, your youngster will probably stop nocturnal enuresis around the age the parent stopped bed-wetting. Generally, your youngster will be your doctor's guide to the level of necessary treatment. If your youngster isn't especially bothered or embarrassed by an occasional wet night, home remedies may be the ideal treatment. However, if your grade school youngster is terrified about wetting the bed during a sleepover, he or she may be more motivated to try additional treatments.

• Calm the bladder. If your youngster has a small bladder, an anticholinergic drug such as oxybutynin (Ditropan) or hyoscyamine (Levsin) may help reduce bladder contractions and increase bladder capacity. Side effects may include dry mouth and facial flushing.

• Change a youngster's sleeping and waking pattern. The antidepressant imipramine (Tofranil) may provide nocturnal enuresis relief by changing a youngster's sleeping and waking pattern. The medication may also increase the amount of time a youngster can hold urine or reduce the amount of urine produced. Imipramine has been associated with mood changes and sleep problems. Caution is essential when using this medication, because an overdose could be fatal. Because of the serious nature of these side effects, this medication is generally recommended only when other treatments have failed.

• Medication. Your youngster's doctor may prescribe medication to stop bed-wetting. Sometimes a combination of medications is most effective. There are no guarantees, however, and medication doesn't cure the problem. Nocturnal enuresis typically resumes when the medication is stopped.

• Moisture alarms. These small, battery-operated devices — available without a prescription at most pharmacies — connect to a moisture-sensitive pad on your youngster's pajamas or bedding. When the pad senses wetness, the alarm goes off. Ideally, the moisture alarm sounds just as your youngster begins to urinate — in time to help your youngster wake, stop the urine stream and get to the toilet. If your youngster is a heavy sleeper, another person may need to listen for the alarm. If you try a moisture alarm, give it plenty of time. It often takes at least two weeks to see any type of response and up to 12 weeks to enjoy dry nights. Moisture alarms are highly effective, carry a low risk of relapse or side effects, and may provide a better long-term solution than medication does.

• Slow nighttime urine production. The drug desmopressin acetate (DDAVP) boosts levels of a natural hormone (anti-diuretic hormone, or ADH) that forces the body to make less urine at night. Although DDAVP has few side effects, the most serious is the potential for seizures. This can happen if your youngster drinks too much when taking the medication. For this reason, don't use this medication on nights when your youngster drinks a lot of fluids. Additionally, don't give your youngster this medication if he or she has a headache, has vomited or feels nauseous.

Lifestyle and home remedies—

Here are changes you can make at home that may help:

• Adjust the child's diet. AS and HFA children commonly have a poor immune system and resulting food allergies. Because this may be one of the causes of bed wetting, perform an allergy test on the child, with a physician's permission, to rule this possibility out. Common allergies among children on the spectrum are dairy, grain and strawberries or citrus fruit. To test the child, take one of these categories of food at a time out of her diet completely for two weeks. At the end of the two-week period, give her the food item on an empty stomach. If she is allergic, she will react within 15 to 60 minutes. Continue on to a different category every two weeks until you have tested all three food categories.

• Avoid beverages and foods with caffeine in the evening. Caffeine may increase the need to urinate, so don't give your youngster drinks, such as cola, or snacks that have caffeine, such as chocolate, in the evening.

• Consider a bed-wetting alarm. A common problem among bed wetting in AS and HFA children is that they can't recognize the feeling of moisture. Also, some of these children are not bothered by wetting their bed. Bed-wetting alarms are waterproof censors that attach to bed sheets. When moisture occurs, a beeping alarm goes off. This wakes them up and prompts them to finish going to the bathroom in the restroom. It seems to be very effective for many children on the spectrum, but there are exceptions. Some children get very frightened by the sound, so it is important to consider the child's personality and consult a physician before attempting to use a bed-wetting alarm.

• Encourage double voiding before bed. Double voiding is urinating at the beginning of the bedtime routine and then again just before falling asleep. Remind your youngster that it's OK to use the toilet during the night if needed. Use small night lights, so your youngster can easily find the way between the bedroom and bathroom.

• Encourage regular toilet use throughout the day. During the day and evening, suggest that your youngster urinate once every two hours, or at least enough to avoid a feeling of urgency.

• Limit how much your youngster drinks in the evening. Having around 8 ounces of liquid to drink (about .25 liter) in the evening is generally enough, but check with your doctor to find out what's right for your youngster. There's no need to limit how much your youngster drinks, but some experts feel a good rule of thumb is for kids to have 40 percent of their liquids between 7 a.m. and noon, another 40 percent between noon and 5 p.m., and just 20 percent of their daily fluids after 5 p.m. However, don't limit fluids if your youngster is participating in sports practice or games in the evenings.

• Observe the child's bathroom behavior during the day. It is important to be aware of the level of his current potty training capability. Not being potty trained during the day can point to a developmental problem of not being able to imitate the concept of going to the bathroom in the first place. In this case, you should be patient and potty train the child in the same fashion you would most children. AS and HFA children may take longer to understand the concept as a whole. If they go to the bathroom with no problem during the day, you can assure yourself that they are able to grasp the concept. If this is the case, you need to explore other options of what the problem might be during the night.

• Take advantage of dry protection. For the comfort of the child as well as creating an easier clean up for you, use plastic mattress liners. In addition, have the child wear adult disposable moisture-locking underpants to bed. If needed, she may also wear them throughout the day. This will help contain most of the moisture from her pajamas and the bed sheets. Use these dry protection methods while you are working with the child's bed wetting situation to allow more comfort for both of you.

• Treat constipation. If constipation is a problem for your youngster, your doctor may recommend an over-the-counter stool softener.

• Wake the child up every few hours in the middle of the night and explain to him that he needs to go to the bathroom. Take him to the restroom. If you do this consistently every few hours for a few weeks, it will help implant the idea in his head to get up when he has to go to the bathroom.

Alternative medicine—

Many people are interested in trying alternative therapies to treat bed-wetting, and several therapies, such as hypnosis and acupuncture, appear to be somewhat effective. However, other therapies currently don't have evidence to support their use.

• Acupuncture. This treatment involves the insertion of fine needles in specific parts of the body. Acupuncture may be effective for some kids.
• Chiropractic therapy. The idea behind chiropractic therapy is that if the spine is out of alignment, normal bodily functions will be affected. However, there's little evidence regarding the use of chiropractic therapy for the treatment of bed-wetting.
• Diet. Some people believe that certain foods affect bladder function and that removing these foods from the diet could help decrease bed-wetting. More study is needed.
• Homeopathy and herbs. Although some people are interested in homeopathic remedies and herbal products, none of these has been proven effective in clinical trials.
• Hypnosis. Small trials of hypnosis coupled with suggestions of waking up in a dry bed or visiting the toilet in the night found that this therapy may help some kids stay dry throughout the night.

Be sure to talk to your youngster's doctor before starting any alternative therapy. Some treatments can be just as powerful as prescription medications or surgeries. Make sure the alternative therapies you choose are safe for your youngster and won't interact with other medications your youngster may take.

Coping and support—

Kids don't wet the bed to irritate their moms and dads. Try to be patient as you and your youngster work through the problem together.

• Be sensitive to your youngster's feelings. If your youngster is stressed or anxious, encourage him or her to express those feelings. When your youngster feels calm and secure, nocturnal enuresis may become a thing of the past.
• Celebrate effort. Don't punish or tease your youngster for wetting the bed. Instead, praise your youngster for following the bedtime routine and helping clean up after accidents.
• Enlist your youngster's help. Perhaps your youngster can rinse his or her wet underwear and pajamas or place these items in a specific container for washing. Taking responsibility for nocturnal enuresis may help your youngster feel more control over the situation.
• Plan for easy cleanup. Cover your youngster's mattress with a plastic cover. Use thick, absorbent underwear at night to help contain the urine. Keep extra bedding and pajamas handy.

With reassurance, support and understanding, your youngster can look forward to the dry nights ahead.

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

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Children on the Autism Spectrum and Social Phobia

The diagnosis of social phobia in Aspergers and high-functioning autistic (HFA) kids emphasizes the following:

1. A youngster with social phobia must show the capacity for age-appropriate social relationships with familiar people, and his/her anxiety must occur in peer contexts, not just with grown-ups.
2. Due to limitations of cognitive and perceptual skills, Aspergers and HFA kids with social phobia need not recognize that their fear in social situations is excessive or unreasonable.
3. The anxiety brought on by social situations may be evidenced by crying, tantrums, meltdowns, freezing, shutdowns, or shrinking from social situations with unfamiliar people.
4. There must be evidence of the social fears existing for a minimum of six months.

Developmental Pathways to Social Phobia—

1. Genetic factors: Taken as a whole, studies using twins to determine whether genetics play a significant part in the development of social phobia are inconclusive. Some twin studies have examined the heritability of shyness and social fears rather than the clinical disorder social phobia. Overall, these studies suggest that genetics play a modest to moderate role in the development of symptoms and temperamental traits associated with social phobia.

Studies examining the rates of social phobia in the offspring or in other first-degree relatives of socially phobic people show that social phobia rates in relatives are higher than in the relatives of people with other anxiety disorders or no disorder. Overall, these studies suggest that social phobia is at least moderately familial and possibly specific in its transmission. However, family studies cannot specifically sort-out the relative contributions of genetic influences and family environmental influences on the development of a disorder. Thus, the mechanisms behind this familial connection in social phobia still need clarification.

2. Normative developmental factors: Kids as young as 6 months through 3 years of age commonly show anxiety in the forms of stranger and separation anxiety. Some young kids, when confronted with a new social situation, throw tantrums, cling to a familiar person, avoid contact, refuse to take part in group play, and become overly vigilant. By late childhood and early adolescence, kid's fears of social evaluation of academic and social performance are forefront. Although at some point during their adolescence all youth will experience some level of anxiety about being judged in school or social situations, obviously not everyone goes on to develop pathological levels of social anxiety (i.e., social phobia).

3. Parenting/family environment factors: Research indicates that parent characteristics and family environment (through such mechanisms as modeling of avoidant responses and restricted exposure to social situations) are likely to have at least a moderate effect on the development of social phobia in kids and adolescents. It appears likely that if the parent's own anxiety is communicated to the youngster, a cycle is established in which parent and youngster reinforce each other's anxiety.

Controlling/overprotecting and less affectionate parenting styles have been found to be associated with social phobia in adult offspring, although the cause and effect relationship between these characteristics and social phobia is unclear. A major gap in this area is research that uses kids with social phobia or kids at high risk for social phobia, and this needs to be filled before the developmental impact of parental and family factors can be specified.

4. Physiological factors: Researchers have just begun to explore the physiology of social phobia, and studies have been primarily conducted with grown-ups. When facing phobic situations, socially phobic people commonly experience such symptoms as blushing, racing heart, sweating, and increased respiration, all of which are reactions associated with the autonomic nervous system (ANS). However, the few studies that have examined ANS functioning in socially phobic people have provided mixed results.

Other research has examined the function of the amygdala, a small region in the forebrain involved in the output of conditioned fear responses, e.g., freezing up behavior, blood pressure changes, stress hormone release, and the startle reflex. Hypersensitivity in the neural circuitry that centers on the amygdala may be responsible for behavioral inhibition in kids. The application of currently developing neuroimaging technologies to kids and adolescents may prove to be especially useful in elucidating the continuities and differences between social phobia in youngsters and in grown-ups.

5. Temperamental factors: A predisposition to timidity and nervousness has been believed to be a matter of inborn temperament. The majority of recent research in the role of temperamental factors in the development of social phobia focuses upon behavioral inhibition (BI). BI refers to a temperamental style that is characterized by reluctance to interact with and withdrawal from unfamiliar settings, people or objects. In infants, BI is typically manifest as irritability, in toddlers as shyness and fearfulness, and in school age kids as cautiousness, reticence and introversion. BI includes reactions that can be seen in behavior, such as interrupting of ongoing behavior, ceasing vocalization, comfort seeking from familiar persons, and retreat from and avoidance of unfamiliarity.

BI also includes reactions that are physiological, such as stable high heart rate, acceleration of heart rate to mild stress, pupillary dilation, and increased salivary cortisol. Overall, evidence to date suggests that a behaviorally inhibited temperament may predispose a youngster to the development of high social anxiety, although BI has yet to be definitively identified as a necessary precursor to the development of the clinical syndrome social phobia.

Treatment of Social Phobia—

1. Cognitive Behavioral Treatment (CBT): Treatment from the cognitive-behavioral perspective assumes that social anxiety is a normal and expected emotion. Social anxiety becomes problematic when it exceeds expected developmental levels and results in significant distress and impairment at home, school, and in social contexts. Anxiety is assumed to be comprised of physiological, cognitive, and behavioral components.

Cognitive behavioral treatment involves specific psycho-education, skills training, exposure methods, and relapse prevention plans for addressing the nature of anxiety and its components. Psycho-education provides corrective information about anxiety and feared stimuli; somatic management techniques target autonomic arousal and related physiological responses; developmentally appropriate cognitive restructuring skills are focused on identifying maladaptive thoughts and teaching realistic, coping-focused thinking; exposure techniques involve graduated, systematic, and controlled exposure to feared situations and stimuli; and, relapse prevention methods focus on consolidating and generalizing treatment gains over the long term.

2. Social Effectiveness Therapy for Children (SET-C): This treatment is appropriate for youth ages 8 through 12 and involves 24 treatment sessions held over a 12-week period. Each youngster participates in one group social skills training session and one individual exposure session each week, with structured homework assignments serving to promote generalization of the within session experience to the youngster's real life.

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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Helping Kids on the Spectrum with Transitions: Moving to a New Home

The logistics of a move can - and will - influence your Aspergers or high functioning autistic (HFA) child's adjustment. For many "neurotypical" (i.e., non-autistic) kids, moving can be a positive experience, as it brings the opportunity to develop new friendships, pursue new interests, increase social confidence, and learn important lessons about adapting to change.

However, as parents of Aspergers and HFA children know, “change” is extremely difficult for them. Transitions of any kind, especially those that are unpredictable, are unsettling and can cause the youngster to become totally undone.

Knowing how to support your youngster through change in order to make a successful transition is crucial. Helping with transitions is especially important during childhood “life event” changes (e.g., attending a new school, death in the family, divorce, going to college, moving, etc.).

Here are some tips to help transition your child to a new home:

1. Access religious and community organizations. They can provide a ready structure of activities, contacts, and resources for the whole family. If the family was involved with similar groups before, participating in such activities in the new location can increase feelings of familiarity.

2. Adolescents with Aspergers and HFA will be able to understand the nuances of the decision to move, but may be resistant to change. At a time when they are establishing important relationships outside of the family, they may feel the move threatens their evolving identity. The move can be disruptive to the stability they have already established with a core group of friends or with an athletic or academic path they are pursuing.

3. Allow your youngster to accompany you when viewing potential new homes. Encourage him to ask questions of the Realtor related to areas of interest or importance for him. This will help quell his anxieties, and you may be surprised to hear him ask questions you hadn't thought to ask yourself.

4. Be patient, some kids on the autism spectrum will dive in, develop a support network of friends, and become involved with school and activities without missing a beat. Others may need more time and help to feel acclimated and at ease. Providing your youngster with new experiences in new places will help him in the future when he makes decisions for himself about where to live.

5. During a walk-through of a potential home, give your youngster the chance to speculate with you about room designations, potential location of furniture, changes in décor, etc.

6. For young kids on the spectrum, put their furniture on the moving van last so that it is first to unload. This will help orient them quickly to the new surroundings.

7. Upon arrival to the new home, try to get the youngster’s room in order before the rest of the house.

8. Have your child pack a bag of essential, favorite, "can't live without" things to keep with them at all times.

9. If possible, have your child invite a friend from his old neighborhood for a visit. This can help the youngster make decisions about what is new and fun, and also helps him get a much-needed dose of validation from an old friend.

10. If you are building a new home, it will be beneficial to you and your youngster to document the building process with your child manning the camera.

11. It can be tempting to literally "clean house" and discard old toys and unused articles. But this should be done gingerly. The loss of material things will most likely overwhelm some Aspergers kids. Better to help them sort out the bulk of their things once they've moved in when they can feel more in control of their new environment.

12. Know that your youngster may experience resistance, denial, and emotional upset when you break the news of the move to another house. Be wary of your youngster's potential to dip into a depressed state at this time as well.

13. Moving day will be very emotional for you all, but maintaining a positive attitude about a new beginning and a fresh start will be of great value.

14. Once the initial shock and heartbreak of the news subsides, share with your youngster thoughts about all the impending unknowns that face you and your family.

15. Once you've narrowed your choices of location to a select few, plan to document the final decision-making visits by taking photos or videos. Not only will this be an aid to your youngster, it will be as equally helpful to you as well in recalling certain details.

16. Partner with your youngster in as many facets of the moving process as possible.

17. Preschoolers with Aspergers and HFA are not able to understand the meaning of the move or complex explanations. They are affected more by the reactions and availability of their parents. Little children do best when things are predictable, so keeping to a routine with familiar things and people eases the transition for them. Avoid making other changes at the same time as the move (e.g., toilet training, transfer to a new bed, etc.) so as not to overwhelm and confuse a young Aspie.

18. Scheduling some trips away from the new home may actually help establish the new base. It becomes the place to "come home to" and enhances the sense of a familiar place.

19. School-age kids on the autism spectrum are likely to be concerned about fitting in with new friends and dealing with different academic demands. Their general personality and social style may influence their ease in adjustment. They may also be better able to tolerate the “new kid jitters” if a brother or sister will be at the same school.

20. Some Aspergers and HFA kids will actually thrive in the new environment depending on the circumstances of the move, an accepting peer group, and a supportive mentoring adult network.

21. Stay in contact with the school and other areas in which your youngster is involved to monitor his progress in making the transition. Kids who are still sullen or angry at the parents about the move at home may have anger management issues at school as well.

22. The Internet and cell phone text messaging are a mixed blessing for kids who have recently moved. Contact with old friends helps a youngster stay connected to a support system and provides an outlet for talking about the new home and experiences. But, when a youngster spends long periods of time chatting with friends "back home," it can decrease the motivation to become involved with the new community and interfere with the adjustment to new friends.

23. Timing the move is important. Moms and dads should carefully consider their options. Certain moves may be inevitable (e.g., when a parent loses a job, when finances are strained, etc.) or impossible to predict (e.g., when a parent dies). But when circumstances allow for flexibility, it is often better to postpone or avoid a move at certain transitional times (e.g., when the Aspergers adolescent is a junior in high school, immediately following a divorce, etc.). When timing is not ideal, options may be possible to ease the strain (e.g., having a high school student remain in town with a friend or relative to finish out the year).

24. When moms and dads are sensitive to the impact of moving on their "special needs" youngster, they can make moving a positive experience, enhancing the child's emotional growth, adaptability, self-confidence and social skills.

25. If your youngster is the oldest sibling, let him assist you in breaking the news to younger siblings, cousins, neighbors, or other family members. This type of “grown-up” responsibility can empower him to shift his perspective of the move to a more selfless position. Think of some of the other responsibilities you can share with your youngster to make the move more palatable and less threatening. Some of the things he or she can do include:

• Begin to inventory household and personal belongings
• Determine data involving the geographic location of the move, mileage to and from the destination, and other pertinent logistics
• Fill out change-of-address cards
• Help arrange showings of your current home
• Help you to schedule dates and times to meet with Realtors to view prospective homes
• Identify all utility companies that require notification of the move
• Plan a garage sale or designate items for drop-off donation
• Scan the Internet to locate Realtors, new home listings, and other related information
• Start to prioritize packing and labeling moving boxes

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

Mourning the Loss of a Loved One: Helping Children on the Spectrum through the Grieving Process

As a parent, consider the range of emotions you have experienced after the loss of a loved one (e.g., grief, guilt, shock, loneliness, compassion, etc.), and think of how that might reflect in your ASD or high-functioning autistic (HFA) youngster during his first loss. 

The difference may be that while you outwardly show a variety of feelings associated with loss, you may not see similar emotions in your "special needs" youngster.

Just like you, comprehending the loss of a loved one – even a beloved pet – may take time for your youngster to completely process. Just because he doesn’t grieve in “typical” ways (e.g., openly sobbing, wanting to be with family members, talking to close friends, etc.) doesn't mean he is emotionless or unaffected. In fact, the opposite could be true.

Tips for helping HFA children through the grieving process:

1. An HFA youngster's capacity to understand death — and your approach to discussing it — will vary according to the youngster's age.

2. As children mature into teenagers, they start to understand that every human being eventually dies, regardless of grades, behavior, wishes, or anything they try to do. As your HFA teenager's understanding about death evolves, questions may naturally come up about mortality and vulnerability. These young people also tend to search more for meaning in the death of someone close to them. A teenager who asks why someone had to die probably isn't looking for literal answers, but starting to explore the idea of the meaning of life. They also tend to experience some guilt, particularly if one of their friends died. Whatever your teen is experiencing, the best thing you can do is to encourage the expression and sharing of grief.

3. Children from the ages of about 6 to 10 start to grasp the finality of death, even if they don't understand that it will happen to every living thing one day. A 9-year-old might think, for example, that by behaving or making a wish, grandma won't die. Often, children this age personify death and think of it as the "boogeyman" or a ghost or a skeleton. They deal best with death when given accurate, simple, clear, and honest explanations about what happened.

4. Don't be quick to scold if your youngster's emotions seem inappropriate (e.g., laughing during a solemn discussion). He may be on the verge of meltdown and is distracting himself by playing a mind movie.

5. Don't be surprised if your youngster reports that he has seen, talked with, smelled, or otherwise interacted with the loved one who has recently passed. Remember that your youngster may be very sensitive to many things, seen and unseen. Instead, validate what your youngster tells you by listening carefully, requesting further information, asking clarifying questions, and providing assurances.

6. Don't get angry if your youngster catches you off-guard with seemingly insensitive questions (e.g., about the mechanics of embalming, cremation, burial, body decomposition, etc.). These are honest inquiries designed to contribute to your youngster's understanding and comfort level.

7. Encourage questions. This can be hard because you may not have all of the answers. But it's important to create an atmosphere of comfort and openness, and send the message that there's no one right or wrong way to feel.

8. Follow your youngster's lead. It’s not helpful to exclude him from participating in any of the subsequent formalities (i.e., the funeral or other rituals) if he expresses a desire to attend.

9. If possible, assign your youngster a responsibility. This may help him to maintain focus during what may be a chaotic and upsetting time (especially helpful for preteens and teens).

10. If you need help, many resources — from books to counselors to community organizations — can provide guidance. Your efforts will go a long way in helping your youngster get through this difficult time — and through the inevitable losses and tough times that come later in life.

11. If you think your own grief might prevent you from helping your "special needs" youngster during this difficult time, ask a friend or family member to care for - and focus on - your youngster during the funeral service. Choose someone you both like and trust who won't mind leaving the funeral if your youngster needs to go.

12. Many moms and dads worry about letting their children witness their own grief, pain, and tears about a death. Don't! Allowing your youngster to see your pain shows that crying is a natural reaction to emotional pain and loss. And it can make children more comfortable sharing their feelings. But, it's also important to convey that - no matter how sad you may feel - you'll still be able to care for your family and make your youngster feel safe.

13. Moms and dads can't always shield children from sadness and losses. But helping them learn to cope with them builds emotional resources they can rely on throughout life.

14. Remember that the questions you get may sound much deeper than they actually are. For example, a 5-year-old who asks where someone who died is now probably isn't asking whether there's an afterlife. Rather, children might be satisfied hearing that someone who died is now in the cemetery. This may also be a time to share your beliefs about an afterlife or heaven if that is part of your belief system.

15. Remember that honesty is the best policy. You may be pressured by well-meaning friends or relatives to offer some alternate explanation for the loss of a loved one (e.g., “Grandpa is resting in the ground now”). At some point, your sugar-coated explanation may be exposed, and the cover-up (despite your good intentions) might upset the trust between you and your youngster.

16. Remember that learning how to deal with grief is like coping with other physical, mental, and emotional tasks — it's a process.

17. Until children are about 5 or 6 years old, their view of the world is very literal. So explain death in basic and concrete terms. If the loved one was ill or elderly, for example, you might explain that the person's body wasn't working anymore and the doctors couldn't fix it. If someone dies suddenly, like in an accident, you might explain what happened — that because of this very sad event, the person's body stopped working. You may have to explain that "dying" or "dead" means that the body stopped working.

18. Watch for any signs that children need help coping with a loss. If a youngster's behavior changes radically — for example, a gregarious and easygoing youngster becomes angry, withdrawn, or extremely anxious; or goes from having straight A's to D's in school — then be sure to seek help.

19. What do you tell an HFA youngster about the funeral? You may want to explain that the body of the person who died is going to be in a casket, and that the person won't be able to talk or see or hear anything. Explain that others may speak about the person who died and that some mourners may be crying.

20. Younger children often have a hard time understanding that all people and living things eventually die, and that it is final and they won't come back. So, even after you've explained this, children may continue to ask where the loved one is or when the person is returning. As frustrating as this can be, continue to calmly reiterate that the person has died and can't come back. 

Note: The child who is having serious problems with grief and loss may show one or more of these signs:

• acting much younger than his age for an extended period of time
• an extended period of depression in which the youngster loses interest in daily activities and events
• excessively imitating the dead person
• inability to sleep
• loss of appetite
• prolonged fear of being alone
• refusal to attend school
• repeated statements of wanting to join the dead person
• sharp drop in school performance
• withdrawal from friends

If these signs persist, professional help may be needed. A qualified mental health professional can help the youngster accept the death and assist the others in helping him or her through the mourning process.

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

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

==> 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

COMMENTS:

•    Anonymous said... I had to handle this with my son through the loss if two grand fathers and a dog all in two years. It was traumatic for him but he has handled himself well. I agree with all the suggestions. For my son, I had him pick a few special pictures to have in his room, had him help put together scrapbooks for him so he can revisit them whenever he feels the need. And we are a family that talks about of feelings so we talk about all of them often but happy and sad times.
•    Anonymous said... pretty much be honest with them and let them ask questions in a safe loving environment. My son was there they whole time my Dad was sick and dying. I think it helped that he knew what was happening and that Papa was not in pain and loved greatly. I never pushed him to do anything he didn't want to do. He did, however, disappear at the funeral. I got SO scared but found him hiding behind a couch-the noise/people were just too much for him (he also had sensory processing disorder). We still talk about Papa often and how he misses him. But I assure him that he is watching over us and hopefully one day we will all be together. Let them know their feelings are normal and they can talk about things anytime.
•    Anonymous said... This looks to be a marvelous opportunity for all family members involved. Fortunately, I am very interested in the many complexities of the psychy and it's challenges to those diagnosed with any mental "dis-eases" causing various stresses and difficulties growing up & continuing on through adulthood, if this is the case (and usually is). I only wish I were closer to my grandson, so I could be there in the moments, and not just be "out there somewhere"! He is growing up so fast, and I'm not even a part of his life. It all makes me want to cry. I am going to follow this group and try to learn as much as I can, hoping in the process, I can seriously reach out to him. I really have to get a handle on this issue and the part I want to play, literally/emotionally, in his life from now on.

Please post your comment below…

Helping Teens on the Autism Spectrum to Transition to College

A major life challenge for young people with Aspergers and high-functioning autism (HFA) is attending college after high school graduation. Here are some crucial guidelines to follow as you help your "special needs" teen transition to college:

1. If your youngster's diagnosis has been identified and supported in your school district, a transition plan to support him from graduation to higher education should be implemented by age fourteen with specific resources and contacts identified.

2. Some high schools partner with local colleges to offer higher-education opportunities while the teenager is still attending high school. Inquire about such opportunities well in advance of your teen’s senior year of high school since there may be a waiting list, limited availability, or sign-up procedures.

3. Hopefully at some point in your youngster's school career, a guidance counselor completed an inventory of his aptitudes (i.e., strengths and talents). The results of such an assessment can provide a valuable starting point in weighing future educational paths for your youngster to pursue.

4. Your youngster's school should be able to assist you in matching your youngster's strengths and skills with schools known for their expertise in those select areas (e.g., the college with a strong science program, the university known for its music department, etc.). Literature and other resources can be obtained with the support of your youngster's guidance counselor or other staff. 

 
==> Launching Adult Children With Aspergers: How To Promote Self-Reliance

5. Just prior to graduating high school, encourage your youngster to make an appointment to meet with the guidance counselor to gather information and tips on filling out applications. If your youngster procrastinates, set deadlines by which you expect him to follow through. (Note: His apprehension and resultant procrastination may be misinterpreted as laziness or lack of motivation.)

6. At some point prior to starting college, your child will have to deal with the difficult distinction between “What I want to take with me” vs. “What I have room for and what the college will allow in a dorm.” Usually the two are very different. Advise your child that dormitories are usually tiny, cramped spaces – and he will have to share it with at least one other person.

7. Be sure that your child’s medications are up-to-date. It’s a good idea to have her get a physical just to make sure that everything is working well and that there are no physical limitations that have to be addressed.

8. Be sure to run through the basics of car maintenance at some point. Show how to check the air pressure in the tires, the oil level, the radiator fluid level, etc. Point out the dial or icon on the dashboard that shows whether the car is about to overheat, and discuss what the child should do if that indicator moves toward the dangerous zone. Also, review how to deal with a flat tire (e.g., change it, use a fix-a-flat product, call AAA, etc.).

9. Ensure that you are maintaining the literature, directions, contacts and references, and campus maps as organized as possible. Keep notes cataloged well - and in writing. Carefully photograph or videotape everything, marked clearly, to review as often as needed in order to make a final decision or just familiarize your youngster with the surroundings.

10. If your teenager will be using a credit or debit card, get that established before leaving for college. Be adamant that she is not to sign up for a new credit card. Also, explain how to balance a checkbook and how that must be done each month in order to avoid overdrawing her account and racking up fees for bad checks. Let her know that you are not going to foot the bill for bank fees that she could have avoided.

11. Make sure that all vaccinations are updated — measles, mumps and rubella vaccines should have been given at one and five years of age for entrance into all public schools.

12. Also, make sure that your child has had the hepatitis B vaccine, as well as Menactra — a newer vaccine for meningitis that is specific to the strain that appears to haunt the halls of college dormitories.

13. Make sure that your child has a cell phone with an updated calling plan. Be sure to check to see if it works well on the road to and from school as well as at the college — in the dorm room and on the walkways between classes. Decide whether it would be best for the cell phone’s home area to be based in your hometown, or whether it should be purchased at school, depending upon what would be more convenient for the student. Also discuss what you expect in terms of calls home per week, minutes to be used on a monthly basis or whether e-mail will be the primary communication device.

14. Many teens on the autism spectrum have fears about not being able to fit in, making friends, leaving old friends, and how they’ll fare without parents to talk to on a daily basis. Some teens, of course, are raring to go and won’t give it a second thought, but many fresh high school graduates are fearful of the unknown. Some may even be depressed about leaving home or their old friends. Consider engaging in counseling if you and your teenager can’t figure out the feelings and resolve them. A good counselor can let you know what will help your teenager to feel more comfortable with the move. Thinking and talking about fears and concerns ahead of time will make the transition much more successful and pleasant.

15. Parents should frame this time as a maturing “rite of passage” and not something to be filled with dread.

 
==> Launching Adult Children With Aspergers: How To Promote Self-Reliance

16. Set a budget. Unless you’ve had an older child recently in residence at the same college by which to gauge expenses, you’ll do a lot of guessing at first. A good place to start is to purchase the school’s meal plan. Also, consider funds needed for books, fees, video nights, shooting pool at the student union, etc. Then, depending upon your child’s responsibility level and nature, decide whether she can handle being given the entire spending money for the semester at one time, or whether it should be deposited into her account on a monthly or weekly basis.

17. Take into account the location of classes and the time allotted between classes, in addition to the distance from your youngster's residence (or the parking lot, if commuting) to classes. Some students with Aspergers and HFA find it physically depleting to spend a lot of time walking long distances, especially in inclement weather. On the other hand, if your youngster has too much time between classes, it can be socially awkward to find ways to fill such downtime, especially if he is a commuter.

18. The "special needs" student would do well to develop a checklist that includes not only “academic milestones desired” but social objectives as well (e.g., joining a student organization, attending an athletic event, participating in other on-campus social events, etc.).

19. Many colleges offer support programs to students on the spectrum. On-site coordinators meet weekly with identified students. Upon admission, any such student meets with a coordinator to whom he is assigned and completes a participant agreement that defines the obligation of the support program as well as expectations of the student's participation in the program. By signing a participant agreement, the student gives permission for a release of information so that test scores, grades, and other assessments are shared with his coordinator. This allows the coordinator to access student grades and provide feedback early on in each semester so that any action needed to improve grades can be planned well in advance of failing a course.

20. Another aid provided to students with Aspergers and HFA by some college support programs is a study schedule that is filled out by each student and visually maps how to get organized, use time wisely, and plan when and where to devote time to studying. A calendar, maintained by both the coordinator and the student, records test dates and assignment and project due dates. When the Aspergers student comes in to meet with his coordinator, the coordinator can, at a glance, get a sense of where the student should be in his class management and can ask how he is progressing.

21. Yet another aid provided to these special needs students by some college support programs is a learning style inventory, which is a simple, easy-to-read questionnaire that helps the student’s coordinator to determine the type of learning style unique to each student (e.g., visual learner, auditory learner, kinesthetic learner, someone who learns best through moving and doing, etc.). Supporting the student to identify his learning style and adapt study habits to some helpful techniques is another of the coordinator's responsibilities. This may, in turn, lead to accommodations necessary to achieve success in certain classes (e.g., a professor's flexibility in how graded notebooks are submitted if the student reinforces certain concepts with illustrations).

22. Determining the type and degree of available support may be a decision-making factor in your youngster's college selection. Making a connection with someone who will function as an ally is crucial to your youngster's ability to assimilate successfully. But college is also about broadening one's social contacts as well. An ally may be gained informally, or the relationship may be prearranged through a student mentorship program on campus. Most forward-thinking, progressive universities have programs established to aid students with disabilities, but finding those that have expertise in the subtleties of autism spectrum disorder may prove challenging.

 
==> Launching Adult Children With Aspergers: How To Promote Self-Reliance

23. Discuss your expectations with your child. The following issues should be covered:

• Underage drinking is an all-too-common and socially acceptable college practice, but underage drinking is illegal, stupid, and can quickly get out of hand. A frank discussion of substance use will probably meet with eye-rolling, but it can’t hurt to delve, again, into that area.
• Lots of freshmen register for 12 or 15 hours but drop to six or nine by the end of the semester. The expectation of the minimum number of credits completed per semester is an issue that should be addressed and agreed upon by both the parents and the student before the semester begins so that there are no ambiguities. Statistically, more college students take four and one-half to five years to complete their studies than the traditional four-year program — partly due to legitimate changes in the major area of study, but also due to too many wasted semesters when only six or nine hours of course work were actually completed.
• What are your expectations about going to class and not lazing around the dorm room, sleeping in and hoping to catch the information from the roommate’s notes or via video classes?
• What grade point average needs to be maintained before the new student matures at the community college for a few semesters or years until he’s ready to venture out again? Keep in mind that community colleges offer excellent educations and are usually less expensive. In addition, parents can offer more guidance and supervision if the teen is not ready to “do it on their own.”
• What should the student do if he or she finds that they are in over their head — either academically (grade or credit problems), socially (too many friends or parties), or emotionally (homesick, not enough friends, lonely)? The college counseling center is usually an excellent resource if the college student doesn’t feel comfortable talking to parents about these issues.

24. In partnership with your youngster, explore all that “going off to college” can mean, including:

• Attending a branch campus before relocating to the main campus
• Attending college in another part of your current state (living on campus)
• Attending college in another state (living on campus)
• Considering how to transfer schools (and credits) if things aren't working out, or as part of a plan
• Starting out slowly by living at home but commuting to a local college
• Starting out slowly by taking fewer classes (on campus or living at home)
• Taking classes online over the Internet
• Taking correspondence courses
• Working part-time and attending night classes (on campus or living at home)

25. By following these guidelines, you and your teen will be better prepared for a pleasant and successful college experience. This should be one of the most exciting, challenging, and stimulating times of his life. By avoiding problems such as poor grades, financial disasters or emotional meltdowns, your young adult will have a much greater chance of success in this new life chapter.

==> Launching Adult Children With Aspergers: How To Promote Self-Reliance