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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Aspergers/HFA Children & Anger Control Problems

“My 8-year-old son with AS (high functioning) gets extremely frustrated and angry at various times throughout the day. There doesn’t seem to be a whole lot of rhyme or reason to these outbursts. They are as unpredictable as the weather. Please help me understand what can be done to either curb his temper, or better yet, prevent this from occurring in the first place.”

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Autistic Kids and Peer Rejection

“I need to help my autistic daughter (high functioning) deal with peers – and rejection of peers. I want to be able to help her fit in with her friends.”

All kids want friends. Friendships are what make children who they are developmentally, emotionally, and intellectually. It starts when children are just babies. 

 

Moms and dads sit mesmerized, waiting for their son or daughter to make eye contact, smile, and coo. It’s the beginning of real, social connection. From that moment, life is all about relationship.

Younger kids spend most of their time trying to make and keep friends. The early years of school continue to focus primarily on friendships, emphasizing socialization over academics. But, kids with ASD level 1, or High-Functioning Autism (HFA), have genuine struggles making friends and keeping them. This sets the stage for most of the obvious problems related to autism spectrum disorders.

Your daughter should know that you are an available support for her when things happen that are beyond her control. Young people with HFA need structured, step-by-step guidelines to help them in sticky situations. You can set up a plan for her to use when dealing with her peers.

Use your daughter’s specific friendships to draw out your guidelines. If she has a friend who is happy to play, but acts differently when others are around, she needs a plan of action on how to handle the situation. This can be typical behavior for boys and girls when they fall into social cliques. Help her make a list of “if-then” steps to follow. For example:

• If my friend acts like she doesn’t know me, then I will tell her I don’t like how she is treating me.
• If my friend calls me names in front of other kids, then I will play with someone else or tell an adult.
• If my friend is happy to play, then we’ll play together on the swings.

Another example could be time on the playground. Lay out the guidelines of acceptable behavior on the playground. Give your daughter examples of problems that may arise, and write out a plan of action on how to deal with these problems. With practice, your daughter will be able to replay her plan in her mind and put it into action. For example:

• If my peers try to skip my turn on the slide, I will calmly tell them it is my turn.
• If a boy or girl bullies me on the playground, I will tell my teacher as soon as possible.
• If my teacher doesn’t help me with a bully on the playground, I will tell another grown-up that I trust as soon as I can.

Rejection is tough for all children. There will be times when your daughter will be rejected. It may be that her spectrum disorder has little to do with the rejection. You can still have a plan for dealing with rejection. She should know what appropriate behavior is for a child who has been rejected. Reassure her that this is normal, and that all kids get rejected at some point.

Resources for parents of children and teens on the autism spectrum:
 

==> How to Prevent Meltdowns and Tantrums in Children with Autism Spectrum Disorder

==> Parenting System that Reduces Defiant Behavior in Teens with Autism Spectrum Disorder

==> Launching Adult Children with Autism Spectrum Disorder: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social-Skills and Emotion-Management to Children with Autism Spectrum Disorder

==> Parenting Children and Teens with High-Functioning Autism: Parents' Comprehensive Handbook

==> Unraveling the Mystery Behind High-Functioning Autism: Audio Book

==> Crucial Research-Based Parenting Strategies for Children and Teens with High-Functioning Autism

==> Videos for Parents of Children and Teens with ASD

 

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Resources for Neurodiverse Couples:

==> Online Group Therapy for Men with ASD

==> Online Group Therapy for NT Wives

==> Living with ASD: eBook and Audio Instruction for Neurodiverse Couples 

==> One-on-One Counseling for Struggling Individuals & Couples Affected by ASD

==> Online Group Therapy for Couples Affected by Autism Spectrum Disorder

 ==> Cassandra Syndrome Recovery for NT Wives

==> ASD Men's MasterClass: Social-Skills Training and Emotional-Literacy Development

==> Pressed for time? Watch these "less-than-one-minute" videos for on the go.

 

COMMENTS:

•    Anonymous said… AS AN ADULT IM STILL STRUGGLING WITH THE REJECTION FROM FRIENDS AND THE REJECTION MY SONS RECIEVE ITS HEART BREAKING ALL YOU CAN DO IS BE THERE FOR THEM WHEN IT HAPPENS. I FOUND STICKING TO OUR OWN KIND WORKS FIND THE SIMALARITIES AND STICK WITH THAT.
•    Anonymous said… My son with through the same thing in middle school. He looks normal, but when they found out he was in a special class they stopped hanging around with him- Maybe your women friends has kids you know that he can play with.
•    Anonymous said… My son is fifteen i give up trying and now he has made other aspie friends that understand him.
•    Anonymous said… Find a support group etc its amazing hoq many friends u find for u and ur child. All the best xoxo
*    Anonymous said... my 14 year old daughter is really struggling as we'll. as I am a Christian, I have been encouraging her to join the youth meetings at church.

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Succeeding in College with High-Functioning Autism

“My daughter with autism (mild form) is doing pretty well at college managing her courses and her part-time job. However, she is not managing her finances well. For a while she only had to pay for her car payment and insurance. Now, she has also accumulated some credit cards and short-term loans. While she lives away at school, her mail and bills come here, so I’ve been checking her mail. She has not been paying her bills on time, so I’ve had to make some payments for her. She knows that I am holding her accountable to reimburse me. How can I help her develop an organized budget system, while at the same time not offending her and turning her away from us?”

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