Advocating for Your Aspergers Kid

Friends and family of kids with Aspergers and High-Functioning Autism often feel as if they are in the position that Helen Featherstone describes in her book, A Difference in the Family: Life with a Disabled Child. They are involved with kids who cannot fend for themselves: kids who need advocates to stand up for them. A youngster's call for help means that they can no longer be "ordinary people" without a choice to make. If they choose to advocate, it means taking on a job that will deeply affect their lives.

The task of advocacy takes many forms on the individual to community to societal levels. As one advocate wrote, advocacy can range from "asking a neighbor to turn down a radio to demanding a full-time specialist to help your youngster in school" to lobbying Washington for more effective services.

Advocacy in Everyday Life—

Advocacy on the everyday level is often about simply educating people about Aspergers, a disorder most people have never heard of. It is explaining the same things over and over every time a new person enters the youngster's life. Jonathan is not being willful, selfish and disobedient: these behaviors are a result of his disorder. Sarah wants to make friends with you, she just does not know how. Aspergers is developmental disorder part of the autism spectrum. Yes, Taylor is very bright and academically gifted, but he really does need special services at school.

Advocacy can be about always having playgroup at your house so that your youngster has friends. It can be setting up your home with attractive toys and playground equipment so that other kids will want to come over and play with your youngster.

Advocacy on the everyday level can be about not allowing other kids to bully your child, even if it means going to PTO meetings and setting up an anti-bullying program at your youngster's school. It can be a brother or sister standing up for a sibling with patient explanations when others make fun of him.

Diane Kennedy, mother of two boys with Attention Deficit Disorder and a third son with Aspergers, found that she had to become an advocate among medical professionals. "What began as a mission to obtain care for my sons," she writes, "turned into a quest to promote earlier and better diagnosis, treatment and understanding of individuals with autistic spectrum disorders and ADHD." She ended up doing her own medical research and presenting her conclusions to the medical community about the connection between ADHD and Aspergers.

Advocacy in Your Youngster's School—

Moms & dads of kids with Aspergers also find themselves in the role of their youngster's advocate in the public school systems. Since special education laws are designed to educate each handicapped youngster as an individual, moms & dads (as their youngster's representative) meet with school staff every year to develop an Individual Education Plan for the youngster. However, they must work through disability laws, not Aspergers laws. Moms & dads often know more about the syndrome than school staff; they certainly come to IEP meetings with superior knowledge about their individual youngster. Yet moms & dads often meet with resistance when they ask for services for their youngster.

Unless moms & dads have specific knowledge of federal, state and local laws and unless they understand what services are available in their district, they cannot be effective advocates. The school districts officials do not necessarily volunteer such help and information. Usually if moms & dads do not ask for services such as instruction during summer sessions, early childhood intervention, speech therapy, transportation and the like, their youngster will not receive them. Experts advise moms & dads/advocates to prepare for an IEP meeting by observing classes, exploring programs and options, sharing professional assessments of their youngster, and having knowledge of laws and services available. It is a good idea to bring spouses and get everything in writing.

This means that, as unfair as it seems, the burden of advocacy is on the moms & dads. A study done in 2000 by the National Council on Disability concluded that:

Federal efforts to enforce the law have been inconsistent, ineffective and lacking real teeth over several administrations. Enforcement is the burden of the moms & dads who too often must invoke formal complaint procedures and due process hearings including expensive and time-consuming litigation to obtain services their kids are entitled under the law.

Moms & dads of kids with Aspergers usually get their best help for the IEP process from other moms & dads of kids with similar problems. Moms & dads in the same district who have been through the process can explain how the district operates, who key personnel are, and how best to approach staff for services. By banding together, moms & dads can often create their own original solutions such as starting self-contained classrooms that draw kids from larger areas.

Advocacy Through Interest Groups—

Local chapters of groups such as the Autism Society can provide invaluable help to moms & dads. Some chapters have 24-hour hotlines so you can discuss any problem even as it occurs. Some offer free libraries and/or social programs for families and educational services such as lectures and classes. Some chapters offer unusual options such as sex education classes for kids within the autism spectrum.

On a national level, advocacy groups lobby legislatures for more favorable laws for kids under the autism spectrum. They operate websites that disseminate information on the latest academic studies, medical breakthroughs and new techniques for helping these kids. They raise money for research and public education.

Barbara Kirby and Patricia Bashe are advocates of kids with Aspergers. Not only have they written a guidebook for moms & dads and maintained a comprehensive website called OASIS at http://www.udel.edu/bkirby/asperger/, they also work through the Asperger Coalition for the United States and Homes for Independence. They sum it up as follows: "Advocating for your youngster means laying the groundwork for understanding and becoming your youngster's ambassador to the world."

The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome

Denying the Diagnosis of Aspergers

Anosognosia means denying that you have a medically diagnosed condition and not following doctors' orders. Kids with Aspergers, diabetes, alcoholism and bi-polar disorder commonly react with anosognosia. Diabetic adolescents typically go through several hospitalizations and insulin crises before they accept the fact that they will have to spend the rest of their lives monitoring their blood sugars, injecting insulin and following a special diet. No one, especially teens, wants to accept the idea of a lifelong disorder that makes him or her different from peers. They often take three to five years to process a diagnosis such as diabetes or Aspergers.

Anosognosia is an "aggressive" reaction to diagnosis, but kids and teens can have other kinds of reactions classified as passive, negative, positive, internal, external or assertive. A passive reaction is: "My doctors and parents should take over my life because I have Aspergers." A negative reaction is about dwelling on the worst aspects of the condition. This is the opposite of a positive reaction, which is concentration on the positive aspects of the disorder: "Asperger's means I'm a genius!" People who react "externally" look for their condition in other people. Finally, people who react "assertively" embrace the diagnosis and take control of their problems.

Many kids go through a gamut of emotions such as anger, fear and denial. Very young kids may be frightened and believe that having Aspergers means they are sick and may die. Some feel isolated, as if they are the only ones with this problem. Still others are angry that they have been singled out to have a neurological disorder. Finally, many kids go through a period of anosognosia. Such Aspies believe that if they try hard enough and ignore their doctors, they can be just like everyone else.

However, if the youngster is over age eight years or so, the most common reaction to a diagnosis of Aspergers is relief. Usually both the youngster and his parents finally and gratefully understand that they are not to blame for the youngster's problems. Many kids are grateful that it's "just" Aspergers because they had come to believe that they were insane. A period of denying the diagnosis is usually just an initial reaction that goes away after the youngster and his parents have time to think things over.

If anosognosia occurs, it is much more common in parents of kids with Aspergers than in the kids themselves. This is one reason that most Aspies do not receive their diagnoses until after they enter school (i.e., moms and dads ignore the signs). The preschooler's average to high intelligence and good verbal skills can mask the problems of social interaction until she spends all day in a classroom with other kids.

In addition, when doctors or other professionals diagnose Aspergers, moms and dads often deliberately choose to skip medical treatment. If the youngster does not have glaring educational handicaps, then accepting services at school is not a clear-cut decision. Many moms and dads do not want their youngster to have a "label" and to become part of the population in special education classes.

Some experts believe that the way a family gets the news about their youngster's Aspergers determines whether they accept the diagnosis. Dr. Tony Attwood is one of the leading experts on this condition and has developed a method of explaining Aspergers to kids over age eight years. Believing that "the person will perceive the diagnosis based upon how the clinician explains it," Dr. Attwood advises doctors to be as positive as possible. They should start out by saying, "Congratulations! You have Aspergers!" and then. "You're not bad or mad, you just have a different way of looking at the world!" The next step is to point to famous people who had Aspergers and lived successful lives such as Albert Einstein and Thomas Jefferson.

Dr. Attwood advises doctors to divide a large sheet of paper or blackboard into two sections. One column would be a list of attributes of Aspergers, such as "an obsessive interest in one subject." The other column would be the positive aspect of that attribute, such as "advanced knowledge, ability to concentrate for long periods of time, attention to detail." Instead of mentioning social deficits, a doctor would point out that adults often prefer kids with Aspergers and that Aspies have often develop a unique sense of humor and make extremely loyal friends.

Luke Jackson, a thirteen-year-old author with Aspergers, believes adults should tell kids about their condition as soon as possible. "You (doctors) may think you are doing them a favor if you can't fit them neatly into your checklist of criteria and say they haven't got it," Luke writes. "It just muddles them up more and makes them and all around them think they are even more freakish." He and others believe that getting the diagnosis is only a positive experience because you can learn what worked for others, you can qualify for services at school, and you can get professional help from mental health clinicians.

Authors Patricia Bashe and Barbara Kirby are both parents of kids with Aspergers. They tell moms and dads that while receiving a diagnosis of Aspergers can be devastating, things will eventually get better. They write, "There may never be a time when you won't look back and say who your youngster might have been without Aspergers. However, when the shock wears off - and it will - you will realize that this is the same youngster you have nurtured and loved since birth."

The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome


COMMENTS:

•    Anonymous said... ‎"Labels" are scary to people, especially children. It can be devistating to a child to see their parents perspective of "my child's not 'normal'". The destructive behavior that can go with this is unimaginable and affects everyone in the home. Knowledge & support are what our children need and desire.
•    Anonymous said... ‎"So how does a parent explain it to the child? My son is 10 and was dx'd at 6. We homeschool so it hasn't been an issue. I think he is noticing now and my husband and I are at a loss on how to explain it.
•    Anonymous said... I truly believe that my adolescent cousin has Aspergers. It's very frustrating because I don't think he has been diagnosed. His parents do not seem to care what he does. He has all of the symptoms. Kids and adults do not want to be around him because of the way he acts and they don't seem to realize that he has a problem he can't control. He does not have any friends at school and that really hurts me because I love him so much. His parents love him very much and is told everyday that they love him. I really wish they would get him help.

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Choosing the Right Treats & Gifts for Aspergers Kids

Are you stuck trying to figure out what to give your youngster with Aspergers or High-Functioning Autism for a birthday or holiday treat? Wondering whether, if you give your youngster more treats related to his or her passion, you are just encouraging traits that cause trouble for him or her in school? Relax!

Birthdays and holidays are not the time to try to fix other people. These celebrations are all about unconditional love - appreciating people for who they are now, regardless of the world's expectations. And as moms and dads, we all know how to do that, because no matter how difficult or problematic our kids appear to others, and no matter how exhausted we are at the end of the day, we still love our kids just the way they are. So take a deep breath and do something that may prove surprisingly rewarding - give them what they ask for, as long as it is age-appropriate, within your budget, and represents positive rather than negative values (e.g., don't give video games which glorify violence). And then go one step farther, even if it seems like a monumental task. Give them the treat of your time and understanding, because to your youngster, even a teen, that is the best treat of all.

In the case of a youngster with Aspergers, this can be a more challenging task than with other kids, because you will need to meet them on their own ground; in other words, you need to show them that you take a real interest in their special interest. "What?" says the overburdened mom or dad, "I don't have the time or energy to learn about dinosaurs, or architecture of Medieval Europe, or crocodiles, or computer technology (or whatever the passion may be)." But now is the time to make time, and to learn to speak your youngster's language, to demonstrate your love for him or her. When Monty Roberts (author of The Man Who Listens to Horses) talks about gaining the trust and affection of a horse, especially a difficult or untrained horse, he talks about observing the horse, learning his language, which he calls "Equus," and then speaking that language back to the horse through nonverbal communication that is meaningful for the horse. Our kids are more complex beings, but similar to the challenging horses that Monty Roberts worked with, they need extra support to build trust and affectionate bonds with others. Because they have a harder time reaching out to others socially, they need someone to reach out to them who can speak their language, and understand what is most exciting to them. A mom or dad is the very best person to fill that need.

This task is not as daunting as it may seem. Think about your youngster's passion for awhile, and you will find that you can find an interest of your own in some aspect of it. For instance, if you are an artist, you might paint landscapes for the dinosaurs, or pictures including medieval architecture. If you are interested in languages, then you can learn how computer languages are similar to and different from languages that we speak. Or perhaps you have a collection of stamps or coins or travel souvenirs; you could focus on collecting these items from countries where different types of crocodiles live (did you know that there are 23 different crocodilian species?). Well, you get the point.

But at a more serious and important level, you will be experiencing a twinge of happiness at the delight in your youngster's eyes when you open a present that is a book of medieval cathedrals, or crocodiles of the world, or whatever his or her passion may be, and you exclaim to your youngster, "Now I can learn more about what you know so much about!" Finding your own aspect of his interest to appreciate is important, because you must take the time to demonstrate a genuine interest in his or her subject; the bright youngster with Aspergers will see right through any pretence on your part. Then take the time to develop this interest alongside your youngster, sharing your aspect of this interest with him or her by making time for conversations, collecting materials relevant to the shared topic, proposing field trips, or even watching documentaries on the subject together. As you share your enthusiasm with your youngster, his or her interests may broaden to include yours; or yours may broaden to include his or hers! In either case, you will be having more and longer conversations with your youngster, and sharing a growing mutual interest. You might learn a lot, not only about the subject, but also about your youngster.

What aspects of the subject does your youngster find really fascinating? One youngster was fascinated with horses at an early age, but seemed averse to riding them. It turned out that he had a strong aesthetic sense of the beauty of horses in motion; he later became a gifted artist. His family supported and encouraged his development as an artist because they understood the true nature of his interests early on. An older teenager developed a passion for learning about trees, but in fact what he loved most was the peaceful solitude and lack of criticism he experienced when he was alone in the forest. Studying trees when he couldn't be in the forest was a way to reconnect to that powerful, peaceful experience. His family might have tried to create a more peaceful environment at home, or tried to criticize his social behavior less harshly if they had understood his interest better.

How should you discern the true nature of your youngster's passionate interests before you go shopping? Spend time, even just fifteen minutes a day for two or three days, relaxing with a cup of tea or coffee while you sit near your youngster and quietly observe how he or she spends the time pursuing these interests. What does he or she focus on? Remembering that kids with Aspergers are often oriented visually, be alert to visual images which seem to please your youngster. If your youngster likes cars, for instance, and uses the computer to access images, is it the mechanical design of the cars, or comparing their relative speeds in races, or the landscapes that the cars travel through in video games that are most exciting?

Sometimes the passionate focus seems to transfer inexplicably from one interest to another, but that might be the moment of insight for you - the moment when you can see what is similar between the two different topics. For example, a youngster successively interested in dinosaurs, crocodiles, sharks, and medieval knights might really be most interested in fierce defensive behavior and protective armor. A teenage girl interested in Queen Elizabeth the First, National Velvet and horseback riding, and women explorers and scientists might be seeking stories of female empowerment. Remember that you can always ask your youngster directly what he or she most wants. Kids with Aspergers like life to be predictable, even (or perhaps especially) during the celebration times such as holidays.

Then consider your own needs carefully. If time for solitary relaxation and creative self-expression are high on your list, perhaps you can connect with your youngster and his or her interest by taking time to use your art to create images related to his or her interest area. If you need to get out more, perhaps scheduling some field trips to explore your youngster's passionate interest in a topic, while allowing your youngster the choice of where to go, would create a happy time for both of you. Just planning the trips can be a source of conversation and contentment. Finding time to browse in a bookstore when family members have gift cards enabling each person to choose a favorite book or two is a favorite activity in our family. Take a few moments for yourself for silent relaxation, and after you've allowed the thoughts to settle, write down your needs, and prioritize them. What treat can you give yourself that is also a treat to your youngster?

Remember that the objective of giving these treats, and the real goal of birthday celebrations and the holidays, is to open the channels of unconditional love, and to share that love through communication in a spirit of celebration and new understanding.

The Parenting Aspergers Resource Guide: A Complete Resource Guide For Parents Who Have Children Diagnosed With Aspergers Syndrome

Aspergers Kids with Sleep Issues

Kids with Aspergers and High-Functioning Autism are often hard to put to bed. They may sleepwalk or have problems staying asleep. Some sleep too much, others too little.

The reasons Aspergers kids have trouble falling asleep are:

• compulsions such as hand-washing or fiddling with their lights
• fears
• obsessive thoughts
• reactions to medications
• wanting to stay up with their parents and siblings

Just as they are too restless to go to bed, Aspergers kids often have trouble waking up. They will mope around in the morning and be unable to focus on getting ready for school and other chores.

A youngster's sleep problems can affect his parents' marriage. Most therapists tell moms and dads not to let the youngster sleep in their bed, and to take turns getting up with him. That way each parent gets a full night's sleep every other night. It is best to teach the youngster to stay in his bed and not wander around the house. Also, do not allow him to skip school because he missed sleep.

Some moms and dads enforce a strict bedtime and a regular bedtime routine as a way of calming their youngster for sleep. Another good trick is to use flannel sheets and to experiment with pajama fabrics until you find one that your youngster tolerates. Enclosing the youngster in a sleeping bag or under a bed tent can help. So does playing "white noise" in the background (e.g., run a fan).

Your pediatrician may prescribe sleeping pills such as Sonata, Ambien, Desyrel or Serzone.

Aspergers/HFA Kids and Difficulties in Physical Education Class

"My child (high functioning) absolutely hates gym class. He has a lot of difficulty keeping up with the others and says the teacher yells at him a lot. Is this a fairly normal thing for Asperger's children? Do you have any suggestions on how I can help him with gym class activities?"

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