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

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Drugs to Treat Severe Tantrums in Asperger's Kids: A Bad Idea?

“What is your opinion about using drugs to treat certain symptoms of Asperger syndrome? We have been told by our doctor that our son may benefit from Abilify for treating his angry outbursts and bad temper tantrums, but we are not sure if we want to ‘medicate’ him.”

Drug therapy is not the ultimate treatment for autism spectrum disorders, but it has a definite place depending on the severity of the symptom in question. Drugs can be a critical element in a comprehensive treatment plan. There is a wider range of drugs with more specific biologic effects than ever before. For children with Asperger’s (AS) and High-Functioning Autism (HFA), these newer agents are safer and less disruptive. When paired with professionals who are becoming more skilled at recognizing and managing symptoms, these “special needs” children have a greater opportunity to reach their potential and lead pleasurable lives.

The treatment of complex, disorders like AS and HFA always brings a particular challenge to drug therapy. Also, the specific traits associated with AS and HFA introduce unique complications to childcare and place unusual demands on a therapist's skill and experience. To provide safe and effective treatment, the therapist must understand the core features of the disorder and the manifestations of the disorder in his or her client. Furthermore, a thorough understanding of the family, school, and community resources and limitations is necessary.

Once an assessment has been made, focusing on target symptoms provides a crucial framework for care. Knowing manifestations of symptoms and characterizing their distribution and behavior in the AS or HFA child is crucial. It is particularly important to coordinate behavioral and pharmacologic objectives. The target symptoms should be tracked carefully and placed into a priority system that is based on the risks and disability they create for the child. The skill of drug therapy also means setting out realistic expectations, keeping track of the larger systems of care at school and home, and working closely with moms and dads.

There is an expanding range and pace of biologic and intervention research into AS and HFA. The genetic work has produced exciting leads that are likely to be helpful to future generations. As researchers discover more about the complex neural circuitry that underlie social cognition, repetitive behaviors, and reward systems associated with the disorder, there are good reasons to believe that drug treatment will become more sophisticated and specific. Drug therapy is also moving to design drugs that target more specific populations of receptor and brain functions. This is likely to produce drugs that have fewer side effects, are more effective, and are more symptom-specific.

The Aspergers Comprehensive Handbook


COMMENTS:

•    Anonymous said... Ability is NOT FDA approved for use in kids. Long term effects are unknown. Do your homework before putting your child on such a strong drug. It is commonly used for schizophrenia in adults.
•    Anonymous said... Abilify is used to treat irritability and symptoms of aggression, mood swings, temper tantrums, and self-injury related to autistic disorder in children who are at least 6 years old.
•    Anonymous said... My 4 yr old son was diagnosed with ADHD just 6 mos ago and put on Quillivant and Guanfacine... the doctor has thought he may also have a mild spectrum autism so I spoke to a specialist who is sure that he has Aspergers and wants to see him ASAP. Meanwhile the doctor is now ready (after hearing the specialists opinion) and after several very physically violent outbursts from my son which has caused him to have to leave one daycare and now on the verge of having to leave another- now the doctor has put in a request to have him approved for Rhisperdal. I am scared to death. I have heard so many class action lawsuit commercials lately about men and young men developing breasts and other claims because of this drug... and now my 4 yr old sons doctor wants to put him on it. I am already having such anxiety struggling with accepting the fact that he may have autism and Aspergers and trying to do all the research I can on it.. and now I am struggling with accepting the anxiety of putting him on yet another "dangerous" drug. I just don't know what to think. He is soooo young. He is only 4!!! The ADHD medicine he has been on for the past few months was hard enough for me to accept as it is labeled a "controlled substance". The doctor assures me that these drugs are "safe" under the care of a physician. But he is just 4! So unsure And just a single mom so don't even have a hubby to share my thoughts and concerns with.
•    Anonymous said... Personally I wouldn't .Try to figure out his "triggers" and avoid them before medication .
•    Anonymous said... The decision to medicate my son was not made until he was 9 years old. My advice is that when the "side effects" of the disorder get worse then the side effects of the drugs, you do it! My child had grown to hate himself, and he needed us to see the importance of his own self esteem. Now he is 12, and he values himself again! For us a thousand hugs meant nothing without the drugs. Our meds were Zoloft and Concerta.
•    Anonymous said... These are such tough decisions. We can't presume to fully understand what another family goes through, and everyone copes with the stresses of life differently. There is much to be said for strenuous exercise and energy output. Acquaintances of ours noticed how calm and clearly spoken their often violent autie became once he exerted himself in some kind of exercise. The said it was like meeting their son for the first time. There's lots of stories like that. I wish there was a silver bullet for everyone. Perhaps meds can be seen as just a phase, until more skills or tools are learned, and maturity sets in. It's still a tough decision.
 
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Deliberate Self-Harm in Children with Asperger's and HFA

Deliberate Self-Harm (DSH) is defined as the intentional, direct injuring of body tissue (most often done without suicidal intentions). Forms of DSH may include burning, hair-pulling, head-banging, hitting body parts with the fist, ingestion of toxic substances or objects, interfering with wound-healing, skin-cutting, eye-poking, hand-biting, and excessive self-rubbing.

DSH is one of the most devastating behaviors exhibited by children with Asperger’s (AS) and High-Functioning Autism (HFA). There are many possible reasons why a child on the autism spectrum may engage in DSH. The two main reasons for such behavior appear to be physiological and social.

Possible Physiological Reasons for Deliberate Self-Harm—
  • An AS or HFA child may engage in head-banging in an attempt to actually reduce pain (e.g., pain from a middle ear infection or a migraine headache).
  • Certain sounds (e.g., a baby crying, vacuum cleaner) can cause pain if the child has auditory sensitivities, and DSH may release beta-endorphins which would dampen the pain. On the other hand, the child may be “gating” the pain (i.e., stimulating one area of the body by injuring himself in an attempt to reduce or dampen the pain located in another area of the body).
  • Medications that elevate dopamine levels (e.g., amphetamines) have been shown to initiate DSH.
  • DSH has also been associated with seizure activity in the frontal and temporal lobes. Behaviors often associated with seizure activity include chin-hitting, hand-biting, head-banging, knee-to-face contact, scratching face or arms, and slapping ears or head. Since this behavior is involuntary, some of these children may need some form of self-restraint. Seizures may begin (or are more noticeable) when the youngster reaches puberty (possibly due to hormonal changes).
  • DSH is also common among several genetic disorders (e.g., Lesch-Nyhan Syndrome, Fragile X Syndrome, Cornelia de Lange Syndrome). Since these genetic disorders are associated with some form of structural damage and/or biochemical dysfunction, these abnormalities may cause the child to self-injure.
  • Excessive self-rubbing or scratching is an extreme form of self-stimulation. The child may not feel normal levels of physical stimulation, so she damages the skin in order to receive stimulation or increase arousal.
  • Moms and dads often report that their youngster's DSH is a result of frustration (called low-frustration tolerance).
  • One research project studied a group of autistic kids who had low levels of calcium. These children often exhibited eye-poking behavior. When given calcium supplements, the eye-poking decreased substantially. 
  • Pain associated with gastrointestinal problems (e.g., acid reflux, gas) may be associated with DSH. 
  • Research on administering drugs to human subjects have indicated that low levels of serotonin are associated with DSH.
  • Some researchers have suggested that the levels of certain neurotransmitters are associated with DSH. Beta-endorphins are endogenous opiate-like substances in the brain, and DSH may increase the release of endorphins. As a result, the AS or HFA child experiences an anesthesia-like effect. The release of endorphins may provide the child with a euphoric-like feeling. 
  • The AS or HFA child’s level of arousal is associated with DSH. Researchers have suggested that DSH may increase or decrease one's arousal level. The under-arousal theory states that some children function at a low level of arousal and engage in DSH to increase their arousal. In this case, DSH would be considered an extreme form of self-stimulation. On the other hand, the over-arousal theory states that some children function at a very high level of arousal (e.g., tension, anxiety) and engage in DSH to reduce their arousal level (i.e., the behavior may act as a release of tension and/or anxiety).

Possible Social Reasons for Deliberate Self-Harm—
  • A great deal of research has investigated social aspects of DSH. Basically, positive attention can increase the frequency of DSH (i.e., positive reinforcement), whereas ignoring the behavior can decrease the frequency (i.e., extinction). Self-harming behavior will continue if the AS or HFA child receives intermittent reinforcement (i.e., attention) for the behavior.
  • Communication problems have often been associated with DSH. If the AS or HFA child has poor receptive and/or poor expressive language skills, then this may lead to frustration and escalate into DSH. If the child has poor expressive skills, DSH may occur after he tries to communicate, and the parent does not understand or does not respond appropriately.
  • In an 'avoidance' situation, the child may begin to self-injure soon after someone enters the room or approaches her. In an 'escape' situation, the child may begin to self-injure during a social encounter. 
  • Some AS and HFA children engage in DSH to avoid or escape an aversive social encounter. They may engage in DSH just prior to the social interaction. Thus, they may avoid the social interaction before it begins. On the other hand, the child may engage in DSH to escape or terminate a social encounter that has already begun (e.g., the parent may ask the child to leave the play area, and if the child does not want to comply, he may then engage in DSH). 
  • The AS or HFA child may engage in DSH in order to obtain an object or event. For example, he may request something, not receive it, and then engage in DSH. Also, the behavior may be reinforced positively if the child should, on occasion, receive the desired object or event. Approximately 33% of children engage in DSH because "they want something."

Parents’ Interventions for Deliberate Self-Harm—

1. As mentioned previously, DSH may occur after your child requests something and does not get it.  In this case, you should not give anything to her during or following an episode of DSH. Consistency is important, because the behavior may continue even if your child gets what she wants. A behavioral program can be set up to allow your AS or HFA child to make requests to obtain what she wants, but this should occur in a controlled, non-violent manner (e.g., giving the child options at specific times of the day).

2. Behavior modification may teach the child to inhibit self-harming behaviors.

3. Biochemical interventions (e.g., nutritional supplements, medications) appear to be the treatment of choice for AS and HFA children who engage in DSH.

4. Consumption of dairy products are often associated with middle ear infections in many kids on the autism spectrum. Certain foods in the child’s diet may be responsible for migraines. Also, magnesium deficiency is associated with an increase in sound sensitivity. Magnesium supplements are safe and can reduce sound sensitivity in some children (3 to 4 milligrams per 10 pounds a day). Auditory integration training has also been shown to reduce sound sensitivity.

5. Following an episode of DSH, be careful how you respond to your child. Your attention may be positive (e.g., "What do you want?") or negative ("Don't do that!"). Note that your child may interpret a negative comment in a positive manner, and as a result, the behavior may be “positively reinforced” (i.e., she will repeat the behavior).

6. If your child tends to receive attention following the self-harming behavior – especially if the attention is positive – then you should do your best to ignore the behavior. If this is not possible because your child may injure himself, then try to minimize contact with him while displaying little facial expression (i.e., neither approving nor disapproving).

7. Many moms and dads have reported reductions in severe self-injurious problems soon after placing their youngster on a restricted diet (e.g., a gluten/casein-free diet, removing specific foods to which their youngster showed signs of an allergic reaction).

8. Nutritional and medical interventions can be implemented to normalize the child’s biochemistry, which may reduce the severe behavior.

9. Parents should give their child attention when she does NOT engage in DSH (e.g., positive attention following 15 minutes without an episode of DSH).

10. The Autism Research Institute has received reports from thousands of moms and dads who have given their AS or HFA child vitamin B6, calcium and/or DMG. These moms and dads often observed rather dramatic reductions in – and in some cases, elimination of – DSH.

11. When DSH is associated with biochemical problems, there may be little or no relationship between the child’s physical/social environment and DSH. Therefore, the behavior may occur in various settings and around different people. But, DSH may occur less frequently in situations in which the child’s behavior is incompatible with DSH (e.g., eating, playing, working on a favored task, etc.).

12. When seizure-induced, DSH is involuntary, and you may not notice a relationship between the child’s behavior and his environment. However, since stress can trigger a seizure, there may be a relationship between stressors in the environment and DSH (e.g., too much physical stimulation from lighting or noise, too much social stimulation from reprimands or demands).  Certain foods may also induce seizures.  There is evidence that DMG will reduce seizure activity without negative side effects.

13. With respect to expressive language, AS and HFA children should be taught functional communication skills. 

14. With respect to under-arousal, DSH would be observed when the child is bored or is not involved in stimulating activities. With respect to over-arousal, DSH would be observed in arousal-inducing situations (e.g., an especially noisy or brightly lighted room).  Social interaction may also be perceived as very stimulating. If the child is under-aroused, an increase in activity level may be helpful (e.g., use of a stationary bicycle). If the child is over-aroused, steps can be taken before the behavior begins to reduce the child’s arousal level (e.g., relaxation techniques, deep pressure, vestibular stimulation, removing the child from a stimulating situation).  Exercise may also be used to reduce arousal level.

15. Your child may be encouraged to apply safe forms of physical stimulation to those parts of the body which she rubs and/or scratches excessively (e.g., applying a massaging vibrator, rubbing textured objects or a brush against the skin, etc.). There is also evidence that placing a topical anesthetic on the self-injured area may reduce self-injurious behavior.

Tips for Clinicians—

A functional analysis should be conducted in order to obtain a detailed description of the AS or HFA child’s DSH and to determine possible relationships between the behavior and his physical and social environment. The information obtained from a functional analysis should include: What happened before, during and after the behavior? When did it happen? Where did it happen? Who was present? The answers to these questions should help reveal the reason(s) for the self-harming behavior.

Before you collect data, be sure to define the behavior of interest. The focus of the functional analysis should be on a specific behavior (e.g., head-banging) rather than a behavior category (e.g., DSH). Combining several types of DSH into one general behavior may make it tricky to determine different reasons for each behavior (e.g., if the youngster engages in head-banging and excessive self-scratching, there may be a different reason for each behavior; head-banging may be a reaction to frustration, while excessive scratching may be a form of self-stimulation).

During the data collection process, relevant traits of the DSH should be recorded (e.g., frequency, duration, and severity). Data collection should also include information about the child’s physical and social environment, for example: lighting (natural light, florescent, incandescent), sounds (lawn mower, another youngster screaming), day of the week, time of day, people in the child’s environment (teacher, parent, peers), and setting (classroom, cafeteria, playground, etc.).

DSH is one of the most disturbing behaviors that parents may observe in their “special needs” child. Using the interventions listed above may reduce – and even eliminate – such destructive behaviors.

Teaching Social Skills and Emotion Management

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the Aspergers child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually. Thus, the best treatment for Aspergers children and teens is, without a doubt, “social skills training.”

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How to Prevent Meltdowns in Aspergers Children

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's child is totally out-of-control. When it ends, both you and the Asperger’s child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

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Parenting Defiant Aspergers Teens

Although Aspergers is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager with Aspergers are more difficult than they would be with an average teen. Complicated by defiant behavior, the Aspergers teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

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Aspergers Children “Block-Out” Their Emotions

Parenting children with Aspergers and HFA can be a daunting task. In layman’s terms, Aspergers is a developmental disability that affects the way children develop and understand the world around them, and is directly linked to their senses and sensory processing. This means they often use certain behaviors to block out their emotions or response to pain.

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Older Teens and Young Adult Children With Aspergers Still Living At Home

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with Aspergers face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

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Living with an Aspergers Spouse/Partner

Research reveals that the divorce rate for people with Aspergers is around 80%. Why so high!? The answer may be found in how the symptoms of Aspergers affect intimate relationships. People with Aspergers often find it difficult to understand others and express themselves. They may seem to lose interest in people over time, appear aloof, and are often mistaken as self-centered, vain individuals.

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