Question
My 14 year old son has been diagnosed with high functioning autism and ADHD when he was 9 years old. He attended public elementary school and has been at a small private school for 7th grade and is currently in 8th grade. He suffered in elementary school due to a few kids, however, the private school has been such a positive experience for him, he could be himself and his self esteem grew.
Here’s the issue: He has been suffering from a “virus” since the end of August. He remains symptomatic and has been to numerous doctors and testing, all negative. His stomach pain, fevers, pains are all real; however, a few doctors have suggested that they may be psychosomatic in nature. In September, he was not able to walk, or bear weight due to acute muscle pain in his legs. Along with Migraine headaches and Flu like symptoms. His muscle pain has just recently subsided, after months of physical therapy, Gabapentin (he’s being weaned off), acupuncture, Advil and whatever we can do to help him... He has not made it through a full week of school to date. His only coping mechanism was to dive into music (grunge; Nirvana, Foo Fighters, and rock; Pink Floyd, etc.) . He has become the expert and has taught himself the guitar. He was on months of bed rest, so his room became his safe haven. He is admittedly suffering from depression and has been hearing “voices” that tell him what to do. He doesn’t sleep through the night, and the voices yell at him and put him down. He is a sweet, child who is so special...he used to be very convicted with his love for Jesus, but now can’t even say His name.
Sorry for the length of the email, but I felt that you needed some type of background on him. He currently sees a Psych MD every 2 months (15 minute visits) just for medication management and has been seeing a counselor for social skills since he was 9 years old, and outgrew the services...he hasn’t been to that therapist since the summer because the sessions had become “gab” sessions...
His PCP and Psych MD have taken him off Concerta 54mg and he’s completely off Gabapentin for a 2 week trial that’s medication free. He has NOTICEABLY improved with energy and NO stomach pain at all!! He still feels depressed inside, even though he appears to be energetic and happy... OK... what to do from this point forward?
Answer
Re: He remains symptomatic and has been to numerous doctors and testing, all negative. His stomach pain, fevers, pains are all real; however, a few doctors have suggested that they may be psychosomatic in nature…
I would agree that it is mostly psychosomatic. Sometimes a child continually complains of a discomfort or a pain for which a doctor cannot find a cause. The pain or the discomfort, however, is very real to the child. Physical complaints with no apparent medical basis may be a reflection of a stress, such as nervousness in a social situation, a demanding school setting, separation from parents, or other stressful situation. Stress, as it affects the body and the mind, has an effect on some illnesses and can influence how a child perceives the symptoms of the illness, how he deals with the illness, and the rate of recovery.
Re: He has not made it through a full week of school to date…
This is probably related to some school anxiety issues. High-Functioning Autistic (HFA) children of all ages commonly experience school anxiety (i.e., school-related stress). This is often most apparent at the end of summer when school is about to start again, but it can occur year-round. This post explains school anxiety – and what can be done to help the "special needs" child become more relaxed and confident.
Social Stressors—
Many children with HFA and Asperger's experience some level anxiety in social situations they encounter in school. While some of these issues provide important opportunities for growth, they must be handled with care:
• Bullies— Many schools now have anti-bullying programs and policies. Though bullying does still happen at many schools, even those with these policies, help is generally more easily accessible than it was years ago. The bad news is that bullying has gone high-tech. Many children use the Internet, cell phones and other media devices to bully other children, and this type of bullying often gets very aggressive. One reason is that bullies can be anonymous and enlist other bullies to make their target miserable. Another reason is that they don't have to face their targets, so it's easier to shed any empathy that they may otherwise feel.
• Peers— While most children would say that friends are one of their favorite aspects of school, they can also be a source of stress. Concerns about not having enough friends, not being in the same class as friends, not being able to keep up with friends in one particular area or another, interpersonal conflicts, and peer pressure are a few of the very common ways children can be stressed by their social lives at school. Dealing with these issues alone can cause anxiety in even the most secure children.
• Educators— A good experience with a caring teacher can cause a lasting impression on a youngster's life -- so can a bad experience. While most educators do their best to provide children with a positive educational experience, some children are better suited for certain teaching styles and classroom types than others. If there's a mismatch between student and teacher, a youngster can form lasting negative feelings about school or his own abilities.
Scheduling Stressors—
Many grown-ups find themselves overwhelmingly busy these days—work hours are getting longer, vacations are shortened or skipped, and people find themselves with little down time. Sadly, our children are facing similar issues. Here are some of the main scheduling stressors they face:
• Lack of Family Time— Due in part to the busyness of kids' lives and the hectic schedules of most moms and dads, the sit-down family dinner has become the exception rather than the rule in many households. While there are other ways to connect as a family, many families find that they’re too busy to spend time together and have both the important discussions and the casual day recaps that can be so helpful for children in dealing with the issues they face. Due to a lack of available family time, many moms and dads aren't as connected to their children, or knowledgeable about the issues they face, as they would like.
• Not Enough Sleep— According to a poll on this site, a large proportion of readers aren't getting enough sleep to function well each day. Unfortunately, this isn't just a problem that grown-ups face. As schedules get busier, even young children are finding themselves habitually sleep-deprived. This can affect health and cognitive functioning, both of which impact school performance.
• Over-scheduling— Much has been said in the media lately about the over-scheduling of our children, but the problem still continues. In an effort to give their children an edge, or to provide the best possible developmental experiences, many moms and dads are enrolling their children in too many extra-curricular activities. As children become teens, school extracurricular activities become much more demanding. College admissions standards are also becoming increasingly competitive, making it difficult for college-bound high school children to avoid over-scheduling themselves.
Academic Stressors—
Not surprisingly, much of the stress of school is related to what children learn and how they learn it. The following are some of the main sources of academic stress for children on the autism spectrum:
• Homework Problems— Children are being assigned a heavier homework load than in past years, and that extra work can add to a busy schedule and take a toll.
• Learning Styles Mismatch— You may already know that there are different styles of learning -- some learn better by listening, others retain information more efficiently if they see the information written out, and still others prefer learning by doing. If there's a mismatch in learning style and classroom, or if your youngster has a learning disability (especially an undiscovered one), this can obviously lead to a stressful academic experience.
• Test Anxiety— Many of us experience test anxiety, regardless of whether or not we're prepared for exams. Unfortunately, some studies show that greater levels of test anxiety can actually hinder performance on exams. Reducing test anxiety can actually improve scores.
• Work That's Too Easy— Just as it can be stressful to handle a heavy and challenging workload, some kids can experience stress from work that isn't difficult enough. They can respond by acting out or tuning out in class, which leads to poor performance, masks the root of the problem, and perpetuates the difficulties.
• Work That's Too Hard— There's a lot of pressure for children to learn more and more and at younger ages than in past generations. For example, while a few decades ago kindergarten was a time for learning letters, numbers, and basics, most kindergarteners today are expected to read. With test scores being heavily weighted and publicly known, schools and educators are under great pressure to produce high test scores; that pressure can be passed on to children.
Environmental Stressors—
Certain aspects of an HFA youngster's environment can also cause stress that can spill over and affect school performance. The following are some stressors that moms and dads may not realize are impacting their kids:
• Lack of Preparation— Not having necessary supplies can be a very stressful experience for a youngster, especially one who's very young. If a youngster doesn't have an adequate lunch, didn't bring his signed permission slip, or doesn't have a red shirt to wear on "Red Shirt Day," for example, he may experience significant stress. Younger children may need help with these things.
• Lack of Sleep— As schedules pack up with homework, extracurricular activities, family time and some “down time” each day, children often get less sleep than they need. Operating under a sleep deficit doesn’t just mean sleepiness, it can also lead to poor cognitive functioning, lack of coordination, moodiness, and other negative effects.
• Noise Pollution— Believe it or not, noise pollution from airports, heavy traffic, and other sources have been shown to cause stress that impacts kids' performance in school.
• Poor Diet— With the overabundance of convenience food available these days and the time constraints many experience, the average youngster's diet has more sugar and less nutritious content than is recommended. This can lead to mood swings, lack of energy, and other negative effects that impact stress levels.
Signs of school anxiety in HFA and Aspergers kids include:
• Clinging behavior
• Difficulty going to sleep
• Exaggerated, unrealistic fears of animals, monster, burglars
• Excessive worry and fear about parents or about harm to themselves
• Fear of being alone in the dark
• Feeling unsafe staying in a room by themselves
• Headaches
• Lying
• Meltdowns
• Negative attitude
• Nightmares
• Refusing to go to school
• Severe tantrums when forced to go to school
• Shadow the mother or father around the house
• Stomachaches
• Withdrawal, regressive behavior, or excessive shyness
What Can Be Done To Reduce School Anxiety In Students On The Spectrum?
Here are 12 important tips:
1. Understand the value of tears. Crying can be a great stress reliever. It flushes out bad feelings and eases tension. It's hard to see your youngster crying, and your first instinct may be to help him stop as soon as possible. But after the tears have all come out, your youngster may be in a particularly open and receptive mood for talking and sharing. Provide a soothing and sympathetic presence, but let the crying run its course.
2. Set a regular time and place for talking with your youngster, whether in the car, on a walk, during mealtimes, or just before bed. Some of these young people will feel most comfortable in a cozy private space with your undivided attention, but others might welcome some sort of distraction to cut the intensity of sharing their feelings.
3. Routines are good. They help alleviate stress. Establishing a regular bedtime, get-up time, and bath time is important at any age. It also helps children with the disorder learn to develop routines themselves. Family meetings are important. At the beginning of school, set a weekly time to regroup and to talk about what's going on and how it will work: who gets the shower first, what time to set the alarm clocks for. Give everybody a chance to talk.
4. Resist the urge to fix everything. There are some instances in which moms and dads do have to take action. If your youngster is in a class that's too challenging, or is having trouble because an IEP isn't being followed, there are steps you can take. If a teacher or a classmate is truly harassing your youngster, you will want to follow up with that. But you'll also want to teach him that some things in life just have to be dealt with, even though they stink. Fix only what's really badly broken.
5. Know when to get help. Most kids experience school anxiety to some extent, and some feel it more deeply and disruptively. When does it become a big enough problem to require professional help? Some signs to look for are major changes in friendships, style of clothing, music preferences, sleeping and eating habits, attitude and behavior. If you've established a good rapport with your youngster and he suddenly doesn't want to talk, that's a sign of trouble as well.
6. Keep the lines of communication open. Let your youngster know that he can always talk to you, no matter what. It's not always necessary even to have solutions to his problems. Sometimes just talking about things out loud with a trusted adult makes them seem less threatening. And if the situation does become overwhelming for your youngster, you want to be the first to know about it.
7. Do some role-playing. Once you have some concrete examples of anxiety-provoking events, help your youngster figure out an alternate way to deal with them. Discuss possible scenarios and play the part of your youngster in some role-playing exercises, letting him play the part of the demanding teacher or bullying classmate. Model appropriate and realistic responses and coping techniques for your youngster.
8. Be aware that all students feel anxiety about school, even the ones who seem successful and carefree. Knowing this won't lessen your youngster's anxiety, but it may lessen yours.
9. Ask, "What three things are you most worried about?" Making your request specific can help your youngster start to sort through a bewildering array of fears and feelings. If he's unable to name the things that are most worrisome, have him tell you any three things, or the most recent three things.
10. Ask, "What three things are you most excited about?" Most students can think of something good, even if it's just going home at the end of the day. But chances are your youngster does have things he really enjoys about school that just get drowned out by all the scary stuff. Bring those good things out into the light.
11. Acknowledge the problem. Does hearing, "Don't worry!" help when you're anxious about something? It probably doesn't comfort your youngster much, either. The most important thing you can do for a youngster experiencing school anxiety is to acknowledge that his fears are real to him. If nothing else, you'll ensure that he won't be afraid to talk to you about them.
12. When school anxiety persists, parents should consult with a qualified mental health professional who will work with them to develop a plan to immediately return the child to school and other activities. Refusal to go to school in the older Aspergers child or teen is generally a more serious illness, and often requires more intensive treatment.
Re: He is admittedly suffering from depression…
Depression is one comorbid condition of HFA and it is one disorder which is seen in almost every child suffering from an autism spectrum disorder. This very disorder makes its appearance when the child is as young as three years of age and the parents will find that the child is prone to crying several times a day. This number can be more than twenty or thirty times in a single day and that too for the most trivial reasons. The youngster is unable to explain as to why he is crying as one with the disorder has a difficulty in expressing their own feelings.
Re: …and has been hearing voices that tell him what to do…
Hearing voices in itself is normal – but – it is possible to become ill from hearing voices if you cannot cope with them. This means that it is coping with hearing voices that is the problem and not the voices in themselves. This little known fact is based on a lot of research. Several large scale population studies have shown that about 4% of the population hears voices. Of these 4% of the people who hear voices about 30% seek assistance from mental health services. Among children however, even more of the “normal” population hears voices (8%) and as with adults about 30% are referred to mental health services.
What this means is that there are apparently many more people who hear voices who do not require the support of mental health services than those that do. This is because they can cope with the voices and function well in their everyday lives.
Examples of the kinds of traumas that trigger voices include the death of a loved one, divorce, losing a job, failing an exam, but also longer lasting situations like being physically, emotionally or sexually abused. With children the percentage was even higher at 85%, with some traumas specifically related to childhood. These traumas might include being bullied by peers or teachers, or being unable to perform at a certain level at school, another commonly reported traumatic incident related to hearing voices is being admitted to a hospital for long periods because of a physical illness. I would say that hearing voices is mostly a reaction to a situation or a problem the child cannot cope with.
Re: He doesn’t sleep through the night…
Studies find that approximately 73% of kids with the disorder experience sleep problems, and these problems tend to last longer in this group than they do for kids without the disorder. For example, kids on the spectrum are more likely to be sluggish and disoriented after waking. Laboratory research has begun to describe the unique physiological presentation associated with sleep problems in kids on the spectrum, including disruptions in the sleep stage most associated with cognitive functioning (i.e. REM or Rapid Eye Movement sleep). In addition to physiological differences, some of the sleep difficulties in this population may be related to anxiety.
The impact of poor sleep is unequivocal. Poor sleep negatively impacts mood and exacerbates selective attention problems commonly found in kids with HFA, as well as impairing other aspects of cognitive function.
There is no one panacea to manage sleep problems in kids with HFA. However, there are many interventions that are likely to be helpful. In general, moms and dads need to understand and be prepared for resistance to change that these kids often show. Moms and dads should also be prepared for problems to get worse before they get better as kids often initially challenge but then gradually become accustomed to new routines.
A good place to start an intervention targeted at improving sleep is changing lifestyle behaviors and environmental conditions that can influence sleep/wake patterns. These include exercise, napping, diet, and aspects of the bedroom and sleep routine.
Exercise & Activity—
The goal is decreasing arousal as bedtime approaches. To achieve this it may be useful to have a scheduled period before bedtime (approximately 30-45 minutes) in which the aim is calmness and relaxation. During that period, media such as television, computers, electronic games, and music should be limited as they can stimulate the youngster through activity, sound, and light. The availability of VCR and DVR technology makes it easier to control when kids can watch particular shows, thereby avoiding conflict over missing favorite programs that are shown in the late evening. The presence of televisions in kid’s bedrooms has been consistently associated with sleep problems and should be avoided at all costs. Likewise, computer access in a youngster’s bedroom is discouraged for sleep as well as for safety reasons.
In general, exercise during the day is associated with better sleep. However, exercise within 2-4 hours of bedtime can lead to difficulties in falling asleep, as it can disrupt the natural cooling process of the body that leads to rest at night. Having the youngster soak their body, particularly their head, in a calm bath that is as warm as can be tolerated 90 minutes before bedtime may be useful too. When the youngster gets out of the bath, core body temperature will drop rapidly; this is believed to help them to fall asleep faster. Using a waterproof pillow and avoiding the pulsation associated with showers is recommended. The use of progressive muscle relaxation, deep breathing and imagery exercises is the most widely researched treatment for insomnia in kids and may be useful for kids with HFA and Aspergers as well.
Napping—
Controlled and limited (e.g. 20-30 minutes) napping is generally positive. However, longer daytime sleeping can be negative in that it makes it more difficult for the youngster to fall asleep at the ideal time in the evening. If the youngster’s sleep problems are associated with falling asleep, which is common for kids on the spectrum, it is advisable to avoid daytime napping.
Diet—
It is recommended that kids with sleep problems avoid all caffeine, alcohol, tobacco, high fat food, and monosodium glutamate (MSG). In contrast, food rich in protein may promote better sleep. Large meals within 2-3 hours of bedtime should also be avoided. A small carbohydrate/protein snack, such as whole wheat bread and low-fat cheese or milk before bedtime can be helpful to minimize nighttime hunger and stimulate the release of neuro-chemicals associated with falling asleep. For kids who often wake during the night to use the bathroom, and then have trouble falling back asleep, limited fluid intake in the 2 hours prior to bedtime is also recommended.
Melatonin is a natural brain hormone associated with sleep onset. There is some evidence that natural production of melatonin may be reduced in autistic kids. While melatonin supplements may be useful, a common side effect may be increased sluggishness in the morning. As discussed above, this is already a common problem for kids with the disorder. Use of melatonin and other alternative remedies should be discussed with a physician.
The Bedroom—
It is important that the bed and the bedroom are associated with sleep and are not associated with activity. When kids have sleep problems, it is highly recommended that their bed and bedroom activity be limited to sleep only. It is important to make sure that extreme changes in temperature are avoided during the night. Increasing light is associated with decreases in the release of the neuro-chemical melatonin which triggers sleep onset. Thus, it is important to get the sunlight flowing in the youngster’s room as soon as possible in the morning. Conversely, darkening the room at night is critical. When a youngster’s fear of the dark is an issue, behavioral psychotherapy may be necessary. We also recommend moving the clock so that the youngster is not watching the time while lying in bed.
Sleep Routine—
Setting and maintaining a regular time to sleep and wake may be critical. Moms and dads often make the mistake of allowing their kids to sleep much later on non-school days to “make up” for sleep. While this may be useful to a certain extent, allowing the youngster to sleep late in the day makes it difficult for them to fall asleep at an ideal time later in the evening. It is easier to wake a sleeping youngster then to force an alert youngster to go to sleep. Thus, we recommend that you keep your youngster on a regular schedule on non-school days and avoid drastic changes in the time that the youngster wakes. Likewise, having your kids go to bed when they are not tired conditions them to be awake in bed. It is recommended that you let your kids stay up until they are tired while maintaining their waking time in the morning. Then once they begin falling asleep within 10 minutes of going to bed, begin to move bed time earlier by 15 minutes at a time.
With carefully monitoring and patience, many moms and dads can make changes in a youngster’s life that promote better sleep. Improved sleep supports better mood, sustained attention and general health. However, for many families professional consultation is often necessary to design or maintain the appropriate intervention. When you need help, speak with other moms and dads of Aspergers kids about their experiences and ask your primary care doctor for referrals to a sleep expert.
Re: OK... what to do from this point forward?
My assessment, based on the information I have, is this is mostly an anxiety issue which is at least partially derived from past trauma (bullying in elementary school). You are on the right track with having a psychiatrist, but I would definitely have him work with a therapist who can help him deal with anxiety and past trauma.
==> 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
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