My ASD Child

Children on the Autism Spectrum and Emotional Dysregulation

Emotional dysregulation is a term used in the mental health community to refer to an emotional response that is poorly modulated and does not fall within the conventionally accepted range of emotive response. Emotional dysregulation may be referred to as labile mood or mood swings.

Possible manifestations of emotional dysregulation include behavioral outbursts (e.g., destroying or throwing objects, aggression towards self or others, anger and rage, etc.). These variations usually occur in seconds to minutes or hours. Emotional dysregulation can lead to behavioral problems and can interfere with a child’s social interactions and relationships at home and school.

Emotional dysregulation is quite common in Aspergers and High-Functioning Autistic (HFA) children. In my practice, the most frequently asked question by parents is: “What do I do when my child loses control of his emotions?” When emotional dysregulation is occurring, the best reaction is to ensure the safety of all concerned. Know that this behavior is not planned, but instead is most often caused by subtle and perplexing triggers. When the behavior happens, everyone in its path feels pain – especially the Aspergers youngster.

When Your Aspergers or HFA Child Experiences Emotional Dysregulation:

1. Acknowledge your youngster’s effect on you. Many HFA kids will calm down if you acknowledge their impact — and get angrier if you don't. You might stop and say something like, "I've stopped the car (or "I am off the phone") and you have my full attention." Then, ask questions like, "What don't I understand?"

2. Avoid physical power struggles. Using your size and strength only exacerbates the problem. Imagine your youngster is feeling furious and picks up a stick. If you grab it before he has time to give it up voluntarily, he might try to hit you with it. Instead, you can avert danger and acknowledge your youngster’s power by saying, "Please put that down. You could hurt someone you love." (Obviously you would never allow someone to hurt or be hurt.)

3. Don't extend your child’s dysregulated state with too much discussion. If your youngster is feeling out of control or in a rage, a lot of talking may not help – in fact, it could prolong the problem.

4. It's natural for HFA children to sometimes have big feelings. You haven't done something wrong if your youngster has an occasional blow-up or melt-down. Moms and dads should only worry if the youngster is chronically, constantly out of control.

5. Keep breathing and stay relaxed. It's hard not to tense up when your youngster is getting out of control, but if you stay relaxed, he's more likely to follow. Sometimes we start holding our breath when things get tense. Instead, inhale, exhale and then talk through your own feelings in a clear and (if necessary) firm way.

6. Keep your own strong feelings separate from your child’s behavior. While it's often important to show your youngster what you feel, entering into his dysregulated state with your own anger will only escalate the situation. Take a breath, speak calmly, even leave the room and give yourself a time out if you need to.

7. Let the emotional dysregulation run its course as long as no one is being hurt. This is really crucial. A youngster who is filled with raw feelings may not know how to manage them. But he may feel reassured by your calmer presence. Then, you get back to the business of communicating.

8. Let your youngster express negative feelings without judging him. Imagine if every time you were upset, some bigger, taller, frowning person looked down at you and said, "Don't feel that way," or "Don't tell me that." Would you feel like calming down - or acting out?

9. Reflect your youngster’s feelings. You might say, "I can see how frustrated you are. Can you tell me what made you feel that way?" ("What" is always more important than "Why" — it asks for specifics.)

10. Seek professional help if you see a repeated, chronic pattern that you can't figure out. If your child’s destructive behavior escalates and becomes increasingly difficult to deal with, and if nothing works over a period of weeks or months, there may be an underlying issue that needs professional help. You can find a referral through a doctor, guidance counselor at your youngster’s school, a friend, neighbor, community center or place of worship.

11. Set limits that your youngster will find comforting. A limit is not a punishment. Limits may help your youngster learn how to calm himself down. Aspergers and HFA children find the “setting of limits” comforting and soothing. They need to know that you (the parent) are in control.

12. Slow down the process by saying, "I need a moment to think about this." If your youngster is starting to lose control, you can slow things down by giving feedback. You might say, "I can see you're upset. Let's talk."

13. Try not to take your youngster’s strong feelings personally. Many moms and dads feel frustrated or personally attacked if their youngster explodes at them. Don't take his strong feelings personally. “I hate you” is not actually a personal statement. What your youngster really may be saying is “I hate being out of control.”

14. Try to avoid threats in the heat of the moment. The moment you make irrational threats with punishments that do not suit the occasion, you are not talking about the topic anymore. In the heat of the moment, if you say, “If you throw that toy – I’ll ground you,” then the youngster may start to fight the grounding, and the original issue is lost.

15. Try to comfort your youngster physically. Each kid on the autism spectrum reacts to emotional dysregulation differently. Some will want to be held, others want to be left alone. If it seems right, you might try holding your youngster, if he will let you. If your child struggles ferociously, let go as long as no one will get hurt.

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

==> Preventing Meltdowns and Tantrums in Asperger's Children

==> Discipline for Defiant Asperger's Teens

==> Teaching Social Skills and Emotion Management

==> Launching Adult Children with Asperger's: How to Promote Self-Reliance

==> Everything You'll Ever Need to Know About Parenting Asperger's Children

==> Parenting Children and Teens with High-Functioning Autism

==> AudioBook: Unraveling The Mystery Behind Asperger’s and High-Functioning Autism

==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism

What causes Aspergers and HFA?

Scientists don't know the exact causes of Aspergers or High-Functioning Autism (HFA), but research suggests that both genes and environment play important roles. In identical twins who share the exact same genetic code, if one has Aspergers, the other twin also has Aspergers in nearly 9 out of 10 cases. If one sibling has Aspergers, the other siblings have 35 times the normal risk of also developing the disorder. Researchers are starting to identify particular genes that may increase the risk for Aspergers. Still, scientists have only had some success in finding exactly which genes are involved.

Most people who develop Aspergers have no reported family history of autism, suggesting that random, rare, and possibly many gene mutations are likely to affect a person's risk. Any change to normal genetic information is called a mutation. Mutations can be inherited, but some arise for no reason. Mutations can be helpful, harmful, or have no effect.

Having increased genetic risk does not mean a youngster will definitely develop Aspergers. Many researchers are focusing on how various genes interact with each other and environmental factors to better understand how they increase the risk of this disorder.

In medicine, "environment" refers to anything outside of the body that can affect health. This includes the air we breathe, the water we drink and bathe in, the food we eat, the medicines we take, and many other things that our bodies may come in contact with. Environment also includes our surroundings in the womb, when our mother's health directly affects our growth and earliest development.

Researchers are studying many environmental factors such as family medical conditions, parental age and other demographic factors, exposure to toxins, and complications during birth or pregnancy.

As with genes, it's likely that more than one environmental factor is involved in increasing risk for Aspergers. And, like genes, any one of these risk factors raises the risk by only a small amount. Most people who have been exposed to environmental risk factors do not develop Aspergers. The National Institute of Environmental Health Sciences is also conducting research in this area.

Scientists are studying how certain environmental factors may affect certain genes—turning them on or off, or increasing or decreasing their normal activity. This process is called epigenetics and is providing researchers with many new ways to study how disorders like Aspergers develop and possibly change over time.

Health experts recommend that kids receive a number of vaccines early in life to protect against dangerous, infectious diseases, such as measles. Since pediatricians in the United States started giving these vaccines during regular checkups, the number of kids getting sick, becoming disabled, or dying from these diseases has dropped to almost zero.

Kids in the United States receive several vaccines during their first 2 years of life, around the same age that Aspergers symptoms often appear or become noticeable. A minority of moms and dads suspect that vaccines are somehow related to their youngster's disorder. Some may be concerned about these vaccines due to the unproven theory that Aspergers may be caused by thimerosal. Thimerosal is a mercury-based chemical once added to some, but not all, vaccines to help extend their shelf life. However, except for some flu vaccines, no vaccine routinely given to preschool aged kids in the United States has contained thimerosal since 2001. Despite this change, the rate of kids diagnosed with Aspergers has continued to rise.

Other moms and dads believe their youngster's illness might be linked to vaccines designed to protect against more than one disease, such as the measles-mumps-rubella (MMR) vaccine, which never contained thimerosal.

Many studies have been conducted to try to determine if vaccines are a possible cause of autism. As of 2010, none of the studies has linked autism and vaccines.

Following extensive hearings, a special court of Federal judges ruled against several test cases that tried to prove that vaccines containing thimerosal, either by themselves or combined with the MMR vaccine, caused 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

How To Parent An Aspergers Child: From Childhood To Adulthood

What works for your Aspergers (high functioning autistic) child at the age of 3 may not work for him/her at the age of 13. Here are some important tips for parenting children on the spectrum across the lifespan:

Childhood—

After your youngster is diagnosed with Aspergers, you may feel unprepared or unable to provide him/her with the necessary care and education. Know that there are many treatment options, social services and programs, and other resources that can help.

Some tips that can help you and your Aspergers youngster are:

• Contact your local health department or autism advocacy groups to learn about the special programs available in your state and local community.

• Keep a record of conversations, meetings with health care providers and educators, and other sources of information. This will help you remember the different treatment options and decide which would help your youngster most.

• Keep a record of the doctors' reports and your youngster's evaluation. This information may help your youngster qualify for special programs.

• Talk with your youngster's doctor, school system, or autism support groups to find an autism expert in your area who can help you develop an intervention plan and find other local resources.

Adolescence—

The adolescent years can be a time of stress and confusion for any growing youngster, including adolescents with an autism spectrum disorder. During adolescence, teens become more aware of other people and their relationships with them. While most adolescents are concerned with acne, popularity, grades, and dates, adolescents with Aspergers may become painfully aware that they are different from their peers. For some, this awareness may encourage them to learn new behaviors and try to improve their social skills. For others, hurt feelings and problems connecting with others may lead to depression, anxiety, or other mental disorders.

One way that some Aspergers adolescents express the tension and confusion that can occur during adolescence is through increased aggressive behavior. Teens with Aspergers will also need support to help them understand the physical changes and sexual maturation they experience during adolescence.

If your adolescent seems to have trouble coping, talk with his or her doctor about possible co-occurring mental disorders and what you can do. Behavioral therapies and medications often help.

Transition to Adulthood—

The public schools' responsibility for providing services ends when a youngster with Aspergers reaches the age of 22. At that time, some families may struggle to find jobs to match their adult child’s needs. If your family cannot continue caring for an adult child at home, you may need to look for other living arrangements.

Long before your youngster finishes school, you should search for the best programs and facilities for young adults with Aspergers. If you know other moms and dads of Aspergers adults, ask them about the services available in your community. Local support and advocacy groups may be able to help you find programs and services that your youngster is eligible to receive as a grown-up.

Another important part of this transition is teaching young people with Aspergers to self-advocate (i.e., take on more responsibility for their education, employment, health care, living arrangements, etc.). Grown-ups with Aspergers must self-advocate for their rights under the Americans with Disabilities Act at work, in higher education, in the community, and elsewhere.

There are many options for grown-ups living with Aspergers. Helping your adult child choose the right one will largely depend on what is available in your state and local community, as well as your youngster's skills and symptoms.

Below are some examples of living arrangements you may want to consider:

• Independent living. Most grown-ups with Aspergers are able to live on their own. Others can live in their own home or apartment if they get help dealing with major issues (e.g., managing personal finances, obtaining necessary health care, interacting with government or social service agencies, etc.). Family members, professional agencies, or other types of providers can offer this assistance.

• Living at home. Government funds are available for families who choose to have their adult child with Aspergers live at home. These programs include Supplemental Security Income, Social Security Disability Insurance, and Medicaid waivers. Information about these programs and others is available from the Social Security Administration (SSA). Make an appointment with your local SSA office to find out which programs would be right for your adult youngster.

• Long-term care facilities. This alternative is available for those with Aspergers who need intensive, constant supervision.

• Other home alternatives. Some families open their homes to provide long-term care to grown-ups with disabilities who are not related to them. If the home teaches self-care and housekeeping skills and arranges leisure activities, it is called a "skill-development" home.

• Supervised group living. People with disabilities often live in group homes or apartments staffed by professionals who help with basic needs. These needs often include meal preparation, housekeeping, and personal care. People who are more independent may be able to live in a home or apartment where staff only visits a few times a week. Such residents generally prepare their own meals, go to work, and conduct other daily activities on their own.

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

Getting Aspergers Children Ready For School

Help for parents who are stressed-out every morning because they can't seem to get their Aspergers child out the door and off to school:

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

What are some other conditions that Aspergers children may have?

Most Aspergers (high functioning autistic) children and teens have at least one comorbid (i.e., co-existing) condition in addition to their autism diagnosis as listed below:

1. Co-occurring mental disorders— Kids with Aspergers can develop mental disorders (e.g., anxiety disorders, attention deficit hyperactivity disorder (ADHD), depression, etc.). Research shows that children and teens with Aspergers are at higher risk for some mental disorders than those without Aspergers. Managing these co-occurring conditions with medications or behavioral therapy, which teaches kids how to control their behavior, can reduce symptoms that appear to worsen a youngster's Aspergers symptoms. Controlling these conditions will allow kids with Aspergers to focus more on managing their disorder.

2. Fragile X syndrome— Fragile X syndrome is a genetic disorder and is the most common form of inherited intellectual disability, causing symptoms similar to Aspergers. The name refers to one part of the X chromosome that has a defective piece that appears pinched and fragile when viewed with a microscope. Fragile X syndrome results from a change, called a mutation, on a single gene. This mutation, in effect, turns off the gene. Some children may have only a small mutation and not show any symptoms, while others have a larger mutation and more severe symptoms. Around 1 in 3 kids who have Fragile X syndrome also meet the diagnostic criteria for Aspergers, and about 1 in 25 kids diagnosed with Aspergers have the mutation that causes Fragile X syndrome. Because this disorder is inherited, kids with Aspergers should be checked for Fragile X, especially if the moms and dads want to have more kids. Other family members who are planning to have kids may also want to be checked for Fragile X syndrome.

3. Gastrointestinal problems— Some moms and dads of Aspergers kids report that their youngster has frequent gastrointestinal (GI) or digestion problems (e.g., stomach pain, diarrhea, constipation, acid reflux, vomiting, bloating, etc.). Food allergies may also cause problems for kids with Aspergers. It's unclear whether these kids are more likely to have GI problems than neurotypical kids. If your youngster has GI problems, a doctor who specializes in GI problems, called a gastroenterologist, can help find the cause and suggest appropriate treatment. Some studies have reported that kids with Aspergers seem to have more GI symptoms, but these findings may not apply to all Aspergers kids. For example, a recent study found that kids with Aspergers in Minnesota were more likely to have physical and behavioral difficulties related to diet (e.g., lactose intolerance or insisting on certain foods), as well as constipation, than kids without Aspergers. The researchers suggested that kids with Aspergers may not have underlying GI problems, but that their behavior may create GI symptoms (e.g., a youngster who insists on eating only certain foods may not get enough fiber or fluids in his or her diet, which leads to constipation). Some moms and dads may try to put their youngster on a special diet to try to control Aspergers or GI symptoms. While some kids may benefit from limiting certain foods, there is no strong evidence that these special diets reduce Aspergers symptoms. If you want to try a special diet, first talk with a doctor or a nutrition expert to make sure your youngster's nutritional needs are being met.

4. Intellectual disability— Many kids with Aspergers have some degree of intellectual disability. When tested, some areas of ability may be normal, while others—especially cognitive (thinking) and language abilities—may be relatively weak. For example, a youngster with Aspergers may do well on tasks related to sight (e.g., putting a puzzle together) but may not do as well on language-based problem-solving tasks. Kids with Aspergers often have average or above-average language skills and do not show delays in cognitive ability or speech.

5. Seizures— One in four kids with Aspergers has seizures, often starting either in early childhood or during the teen years. Seizures, caused by abnormal electrical activity in the brain, can result in: (a) staring spells, (b) convulsions (i.e., uncontrollable shaking of the whole body) or unusual movements, and (c) a short-term loss of consciousness or a blackout. Sometimes lack of sleep or a high fever can trigger a seizure. An electroencephalogram (EEG), a nonsurgical test that records electrical activity in the brain, can help confirm whether a youngster is having seizures. However, some kids with Aspergers have abnormal EEGs even if they are not having seizures. Seizures can be treated with medicines called anticonvulsants. Some seizure medicines affect behavior; changes in behavior should be closely watched in kids with Aspergers. In most cases, a doctor will use the lowest dose of medicine that works for the youngster. Anticonvulsants usually reduce the number of seizures but may not prevent all of them.

6. Sensory problems— Many kids with an autism spectrum disorder either over-react or under-react to certain sights, sounds, smells, textures, and tastes. For example, some may: (a) have no reaction to intense cold or pain, (b) experience pain from certain sounds – and sometimes cover their ears and scream (e.g., vacuum cleaner, a ringing telephone, a sudden storm, etc.), and (c) dislike or show discomfort from a light touch or the feel of clothes on their skin. Researchers are trying to determine if these unusual reactions are related to differences in integrating multiple types of information from the senses.

7. Sleep problems— Kids with Aspergers tend to have problems falling asleep or staying asleep, or have other sleep problems. These problems make it harder for them to pay attention, reduce their ability to function, and lead to poor behavior. In addition, moms and dads of Aspergers kids with sleep problems tend to report greater family stress and poorer overall health among themselves. Fortunately, sleep problems can often be treated with changes in behavior (e.g., following a sleep schedule, creating a bedtime routine, etc.). Some kids may sleep better using medications such as melatonin, which is a hormone that helps regulate the body's sleep-wake cycle. Like any medication, melatonin can have unwanted side effects. Talk to your youngster's doctor about possible risks and benefits before giving your youngster melatonin. Treating sleep problems in kids with Aspergers may improve the youngster's overall behavior and functioning, as well as relieve family stress.

8. Tuberous sclerosis— Tuberous sclerosis is a rare genetic disorder that causes noncancerous tumors to grow in the brain and other vital organs. Tuberous sclerosis occurs in 1 to 4 percent of children with Aspergers. A genetic mutation causes the disorder, which has also been linked to mental retardation, epilepsy, and many other physical and mental health problems. There is no cure for tuberous sclerosis, but many symptoms can be treated.

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

How to Prevent Meltdowns in Children on the Spectrum

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 or HFA child is totally out-of-control. When it ends, both you and your 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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My ASD Child

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Children on the Autism Spectrum and Emotional Dysregulation

What causes Aspergers and HFA?

How To Parent An Aspergers Child: From Childhood To Adulthood

Getting Aspergers Children Ready For School

What are some other conditions that Aspergers children may have?

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