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:

==> 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

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:

==> 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

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 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

Best Treatment Options for Aspergers and HFA

"What are some of the better treatment options for children on the autism spectrum?"

While there is no cure for Aspergers or High Functioning Autism (HFA), treating it early with proper school-based programs and medical care can (a) greatly reduce symptoms and (b) increase your youngster's ability to grow and learn new skills.

Early Intervention—

Research has shown that intensive behavioral therapy during the toddler or preschool years can significantly improve cognitive and language skills in young kids with Aspergers and HFA. There is no single best treatment for all kids, but the American Academy of Pediatrics recently noted common features of effective early intervention programs. These include:

1. Encouraging activities that include typically developing kids, as long as such activities help meet a specific learning goal
2. Guiding the youngster in adapting learned skills to new situations and settings and maintaining learned skills
3. Having small classes to allow each youngster to have one-on-one time with the therapist or teacher and small group learning activities
4. Having special training for moms and dads and family
5. Measuring and recording each youngster's progress and adjusting the intervention program as needed
6. Providing a high degree of structure, routine, and visual cues, such as posted activity schedules and clearly defined boundaries, to reduce distractions
7. Providing focused and challenging learning activities at the proper developmental level for the youngster for at least 25 hours per week and 12 months per year
8. Starting as soon as a youngster has been diagnosed with Aspergers
9. Using a curriculum that focuses on:

• Cognitive skills, such as pretend play or seeing someone else's point of view- Language and communication
• Research-based methods to reduce challenging behaviors, such as aggression and tantrums
• Self-help and daily living skills, such as dressing and grooming
• Social skills, such as joint attention (looking at other people to draw attention to something interesting and share in experiencing it)
• Typical school-readiness skills, such as letter recognition and counting

One type of a widely accepted treatment is Applied Behavior Analysis (ABA). The goals of ABA are to shape and reinforce new behaviors, such as learning to speak and play, and reduce undesirable ones. ABA, which can involve intensive, one-on-one child-teacher interaction for up to 40 hours a week, has inspired the development of similar interventions that aim to help children with Aspergers and HFA reach their full potential. ABA-based interventions include:

• Pivotal Response Training: Aims at identifying pivotal skills, such as initiation and self-management that affect a broad range of behavioral responses. This intervention incorporates parent and family education aimed at providing skills that enable the youngster to function in inclusive settings.
• Verbal Behavior: Focuses on teaching language using a sequenced curriculum that guides kids from simple verbal behaviors (echoing) to more functional communication skills through techniques such as errorless teaching and prompting.

Other types of early interventions include:

• TEACCH (Treatment and Education of Autistic and related Communication handicapped Kids): Emphasizes adapting the youngster's physical environment and using visual cues (e.g., having classroom materials clearly marked and located so that students can access them independently). Using individualized plans for each student, TEACCH builds on the youngster's strengths and emerging skills.
• Interpersonal Synchrony: Targets social development and imitation skills, and focuses on teaching kids how to establish and maintain engagement with others.
• Developmental, Individual Difference, Relationship-based (DIR) / Floortime Model: Aims to build healthy and meaningful relationships and abilities by following the natural emotions and interests of the youngster. One particular example is the Early Start Denver Model, which fosters improvements in communication, thinking, language, and other social skills and seeks to reduce atypical behaviors. Using developmental and relationship-based approaches, this therapy can be delivered in natural settings such as the home or pre-school.

For kids younger than age 3, these interventions usually take place at home or in a childcare center. Because moms and dads are a youngster's earliest educators, more programs are beginning to train moms and dads to continue the therapy at home.

Children on the autism spectrum may benefit from some type of social skills training program. While these programs need more research, they generally seek to increase and improve skills necessary for creating positive social interactions and avoiding negative responses. For example, Children’s Friendship Training focuses on improving kid's conversation and interaction skills and teaches them how to make friends, be a good sport, and respond appropriately to teasing.

Working With Schools—

Start by speaking with your youngster's teacher, school counselor, or the school's student support team to begin an evaluation. Each state has a Parent Training and Information Center and a Protection and Advocacy Agency that can help you get an evaluation. A team of professionals conducts the evaluation using a variety of tools and measures. The evaluation will look at all areas related to your youngster's abilities and needs.

Once your youngster has been evaluated, he has several options, depending on the specific needs. If your youngster needs special education services and is eligible under the Individuals with Disabilities Education Act (IDEA), the school district (or the government agency administering the program) must develop an individualized education plan, or IEP specifically for your youngster within 30 days.

IDEA provides free screenings and early intervention services to kids from birth to age 3. IDEA also provides special education and related services from ages 3 to 21. Information is available from the U.S. Department of Education.

If your youngster is not eligible for special education services (not all kids on the spectrum are eligible) he can still get free public education suited to his or her needs, which is available to all public-school kids with disabilities under Section 504 of the Rehabilitation Act of 1973, regardless of the type or severity of the disability.

The U.S. Department of Education's Office for Civil Rights enforces Section 504 in programs and activities that receive Federal education funds. More information on Section 504 is available on the Department of Education website.

During middle and high school years, your youngster's educators will begin to discuss practical issues such as work, living away from a parent or caregiver's home, and hobbies. These lessons should include gaining work experience, using public transportation, and learning skills that will be important in community living.

Medications—

Some medications can help reduce symptoms that cause problems for your youngster in school or at home. Many other medications may be prescribed off-label, meaning they have not been approved by the U.S. Food and Drug Administration (FDA) for a certain use or for certain people. Physicians may prescribe medications off-label if they have been approved to treat other disorders that have similar symptoms to Aspergers, or if they have been effective in treating adults or older kids with Aspergers and HFA. Physicians prescribe medications off-label to try to help the youngest patients, but more research is needed to be sure that these medicines are safe and effective for kids and teens with the disorder.

At this time, the only medications approved by the FDA to treat aspects of ASDs are the antipsychotics risperidone (Risperdal) and aripripazole (Abilify). These medications can help reduce irritability—meaning aggression, self-harming acts, or temper tantrums—in kids ages 5 to 16 who have the disorder.

Some medications that may be prescribed off-label for kids on the spectrum include the following:

• Stimulant medications, such as methylphenidate (Ritalin), are safe and effective in treating people with attention deficit hyperactivity disorder (ADHD). Methylphenidate has been shown to effectively treat hyperactivity in kids with Aspergers and HFA as well. But not as many kids with the disorder respond to treatment, and those who do have shown more side effects than kids with ADHD and not ASDs.
• Antipsychotic medications are more commonly used to treat serious mental illnesses such as schizophrenia. These medicines may help reduce aggression and other serious behavioral problems in kids, including kids with Aspergers and HFA. They may also help reduce repetitive behaviors, hyperactivity, and attention problems.
• Antidepressant medications, such as fluoxetine (Prozac) or sertraline (Zoloft), are usually prescribed to treat depression and anxiety but are sometimes prescribed to reduce repetitive behaviors. Some antidepressants may also help control aggression and anxiety in kids on the autism spectrum. However, researchers still are not sure if these medications are useful; a recent study suggested that the antidepressant citalopram (Celexa) was no more effective than a placebo (sugar pill) at reducing repetitive behaviors in these young people.

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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How Aspergers is Diagnosed

"We have a son who we believe may have asperger syndrome and we were wondering how this disorder is diagnosed."

An Aspergers diagnosis is often a two-stage process. The first stage involves general developmental screening during the child’s checkups with a doctor or an early childhood health care provider. Kids who show some developmental problems are referred for additional evaluation. The second stage involves a thorough evaluation by a team of doctors and other health professionals with a wide range of specialties. At this stage, a youngster may be diagnosed as having some form of autism. Kids with an autism spectrum disorder can usually be reliably diagnosed by age 2, though research suggests that some screening tests can be helpful at 18 months or even younger.

Many individuals (e.g., family doctors, teachers, and moms/dads) may minimize signs of Aspergers at first, believing that kids will "catch up" with their friends. While you may be concerned about labeling your young youngster with Aspergers, the earlier the disorder is diagnosed, the sooner specific interventions may begin. Early intervention can reduce or prevent the more severe problems associated with Aspergers. Early intervention may also improve your youngster's IQ, language, and everyday functional skills (also called adaptive behavior).

Screening—

Your child’s checkup should include a developmental screening test, with specific Autism Spectrum Disorder (ASD) screening at 18 and 24 months. Screening for ASD is not the same as diagnosing ASD. Screening instruments are used as a first step to tell the doctor whether a youngster needs more testing. If your youngster's doctor does not routinely screen your youngster for ASD, ask that it be done.

For moms and dads, your own experiences and concerns about your youngster's development will be very important in the screening process. Keep your own notes about your youngster's development and look through family videos, photos, and baby albums to help you remember when you first noticed each behavior and when he/she reached certain developmental milestones.

Types of ASD Screening Instruments—

Sometimes the doctor will ask moms/dads questions about their youngster's symptoms to screen for Aspergers or some other form of Autism. Other screening instruments combine information from parents with the doctor's own observations of the youngster. Examples of screening instruments for toddlers and preschoolers include:

• Checklist of Autism in Toddlers (CHAT)

• Communication and Symbolic Behavior Scales (CSBS).

• Modified Checklist for Autism in Toddlers (M-CHAT)

• Screening Tool for Autism in Two-Year-Olds (STAT)

• Social Communication Questionnaire (SCQ)

To screen for mild Autism in older kids, the doctor may rely on different screening instruments, such as:

• Australian Scale for Asperger's Syndrome (ASAS)

• Autism Spectrum Screening Questionnaire (ASSQ)

• Childhood Asperger Syndrome Test (CAST)

Comprehensive Diagnostic Evaluation—

The second stage of diagnosis must be thorough in order to find whether other conditions may be causing your youngster's symptoms. A team that includes a psychologist, a neurologist, a psychiatrist, a speech therapist, or other professionals experienced in diagnosing Aspergers may do this evaluation. The evaluation may assess the youngster's cognitive level (i.e., thinking skills), language level, and adaptive behavior (i.e., age-appropriate skills needed to complete daily activities independently, for example eating, dressing, and toileting).

Because Aspergers is a complex disorder that sometimes occurs along with other illnesses or learning disorders, the comprehensive evaluation may include brain imaging and gene tests, along with in-depth memory, problem-solving, and language testing. Kids with any delayed development should also get a hearing test and be screened for lead poisoning as part of the comprehensive evaluation.

Any kid can lose his/her hearing (for various reasons), but common Aspergers symptoms (e.g., not turning to face a person calling their name) can make it seem that the youngster can’t hear – when in fact he/she can. If a youngster is not responding to speech, especially to his/her name, it's important for the doctor to test whether a youngster has hearing loss.

The evaluation process is a good time for moms and dads to ask questions and get advice from the whole evaluation team. The outcome of the evaluation will help plan for treatment and interventions to help your youngster. Be sure to ask who you can contact with follow-up questions.