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Quirky, Yes Hopeless, No

Practical Tips to Help Your Child with Asperger's Syndrome Be More Socially Accepted

St. Martin's Press

ASPERGER'S SYNDROME AND YOUR CHILD

WHAT ARE THE SIGNS OF ASPERGER'S SYNDROME?

The range and degree of characteristics associated with Asperger's syndrome vary considerably, but the most typical are these:

• Generally unaware about people, social situations, time, place. Aspies live very much in the present, in the immediate moment, or many light-years from now, but have no clue what's happening next. They can only see from their point of view and need help in becoming aware of others' thoughts and feelings. They tend to be quite awkward around people and lack social skills.

• Rigid, prefer routine, very literal-minded, and are such purveyors of truth that they are too blunt and inadvertently insult others. Fortunately, they can be taught how to be less direct.

• Have difficulty making eye contact. Some say it's too confusing, even painful, to look someone in the eyes; others say it's distracting and they can't remember what they want to say.

• Have special interests, which for some become obsessions, and they will talk about these topics continuously, whether anyone else is interested or not.

• Act inappropriately, yet have no idea that they are being inappropriate. It is difficult for them to read body language.

• Out-of-the-box thinking lets them see the world very differently than we do and leads to some odd conclusions and odd behavior by conventional standards. It's best to ask them why they are doing something before you get angry. It's easier to be understanding if you know their reasoning.

• Highly sensitive to touch, sound, light, taste, and other stimuli to the degree that a tag in a shirt bothers them, sunlight is too bright, and they prefer to stay indoors much more than be outdoors, where their sensory system is bombarded.

• Need help staying on track and being organized and can become easily overwhelmed by too many directions, too many details, timed tests, and deadlines.

• Lack self-awareness skills and may have bouts of anger and frustration beyond their control. They can learn to cope through repetition and reinforcement.

FREQUENTLY ASKED QUESTIONS ABOUT ASPERGER'S SYNDROME

Ever since founding the Friends' Club in 2000, and performing thousands of assessments for children of all ages, I have heard certain questions over and over from parents just learning that their child or teen has been diagnosed with Asperger's syndrome. As they begin to wonder what it means for their child and for the whole family, these are the questions I hear most often.

1. IS THERE A CURE? WILL MY CHILD OUTGROW IT?

No, there is no cure and they won't grow out of it, but Asperger's kids can learn to cope in the real world with help and guidance. And the good news is that most Asperger's kids really don't care if they're like everyone else. They like their uniqueness and creativity.

Because this is a neurological condition, and not a psychological issue, conventional Freudian or play therapies will not work. There is no interpreting dreams or getting in touch with their feelings, because Asperger's kids are not naturally connected to their feelings. They live more in their minds and imaginations.

To help them cope with daily life and people, cognitive behavior therapy is extremely helpful in raising Aspies' awareness. Kids practice social skills and they learn to associate more successfully with others. Psychotherapy can be effective as long as it's carried out in an engaging manner with a balanced interactive approach. It won't help if the Aspie is allowed to talk on and on about his special interest. But if the session has a mutual, reciprocal interaction, through play or talking, then such therapy can lead to social problem solving and improvement.

2. WHY CAN'T I DISCIPLINE THIS CHILD THE WAY THAT I DO MY OTHERS?

First of all, the emotional carrot that many parents can use with their other children won't work with their Asperger's child. Trying to drum up caring, trying to make them feel ashamed, or trying to get them to please you won't work. Such tactics don't mean anything to an Asperger's child of any age. They don't care about meeting parents' expectations or anyone else's, just their own. The best approach is a totally rational one.

Keep emotion out of your message as much as possible.

Focus on the facts and logical reasons why they should or shouldn't do something and present your case as calmly and clearly as possible. If you make it sound like a rule, all the better, because they are natural-born rule followers. And by following rules, they can please you.

Second, to only tell an Asperger's child what he is doing wrong doesn't work. They are not abstract thinkers, so they can't intuit the next step. You need to tell them exactly what they should be doing, and even show them, if possible. Modeling the desired behavior is extremely helpful to them. And being natural-born rule followers, they will usually comply once they understand, as long as their sensitivities to sounds or smells or light don't get in the way.

Another stumbling block can be that the Asperger's child needs to do things his own way. This makes them seem like they're acting out or misbehaving when really they are just stuck on the idea of doing something a certain way. This is where discipline is less important than being more flexible as a parent. You can't spoil Aspies by letting them do it their way, as might happen with your other children. Giving in to an Asperger's child does not usually lead to manipulative behavior on her part.

Instead the best strategy is to pick your battles, giving in to the smaller deviations from what they're supposed to do, and then making them comply with the truly important requests. Since give-and-take does not come naturally to them, you will have to explain and keep reminding them of how you gave in on the last issue, so now it's their turn to give in and do it your way.

Their opposition can be their way of keeping things predictable — they want to know what comes next. So if you use their desire to do something a certain way to gently force them to be more reciprocal, you both win.

3. CAN MY CHILD CONTROL HIS DISRUPTIVE BEHAVIOR OR NOT?

Again, Asperger's children are not like your neurotypical children, who intentionally push parental buttons to get what they want. A tantrum by an Aspie is more often caused by an overload of sensory stimuli or an inability to loosen up about his own ideas. It is nothing like a spoiled child's tantrum, which is manipulative and should be ignored to discourage such behavior.

An Asperger's child's tantrum needs understanding and patience, a lessening of sensory overload, and a return to calm. While you may enjoy being around people, it is one of the most exhausting and overly stimulating activities for these children.

The main thing for parents to remember is that these children are struggling to make sense of the world around them. And if they could do something, they would, but they often can't — at least, not right away. Things that we don't think twice about are a challenge for Aspies — greeting people, making small talk, planning the next thing to do, being on time, getting organized, navigating anywhere. These are all struggles for them and they get exhausted.

So understanding and communication are the best tools to tackle disruptive behavior. Ask them why they are upset. If they don't know, suggest some possible reasons to help them figure it out. And give them the time and quiet space they need to calm down.

When it comes to obsessive behavior, something that has worked for us at the Friends' Club is to show the child a box and tell him that you are putting that topic in the box. Then close the lid and say, "It's closed. You can't talk about it anymore." This kind of concrete action helps curb the compulsion.

4. WHY DO THEY DO SUCH QUIRKY THINGS?

Asperger's children do not see the world the same way the rest of us do, so they are not bound by convention. They do unconventional things because they are unconventional people. They are not even aware of how different they can be, and the good news is that it doesn't bother them to be different.

Some of our greatest geniuses are thought to have had Asperger's — Albert Einstein, Sir Isaac Newton, Thomas Jefferson, Hans Christian Andersen, Mozart, Vincent van Gogh. These different thinkers didn't let conventional thinking box them in, and they produced groundbreaking theories and creative works that are revered to this day.

When Asperger's kids have the various tics and sporadic movements — hand waving, flapping, twitching — that some children on the autism spectrum have in order to be more aware of their bodies or to release stress, they seem really quirky. We've found that placing a bean bag object on their shoulders or neck will calm some of them, and reduce the random body movements. Anything weighted compresses joints, triggering a series of signals to the brain that makes them feel better.

5. WHY DON'T THEY UNDERSTAND WHAT I WANT THEM TO DO?

First, ask yourself if you're being emotional, because that can make anyone with Asperger's shut down and stop hearing your message. Recent neurological research suggests that people with Asperger's have a neuronal process that automatically shuts down their memory if they are socially or emotionally overwhelmed. They cannot hear or understand whatever you have to say, nor can they communicate their own thoughts or feelings. The best thing to do is to deal with them logically and without emotion.

Also, remember that if you are proposing something abstract, then often your child won't be able to grasp what you want her to do. As concrete thinkers, Aspies respond better to visual images. Write out what you want them to do or, better still, show them what you want them to do.

6. WHY CAN'T I GET MY CHILD OUT OF THE HOUSE?

It's true that Asperger's kids are most comfortable at home. There they experience fewer sensations, fewer surprises, and less social discomfort. They put so much effort into just holding it together when they're out of the house and interacting with people that they need a retreat where they are comfortable and they can decompress. The best thing that you can do as their parents is to allow them this time alone and a quiet space at home, for a certain amount of time each day. Please accept that they prefer — and need — this sanctuary from the real world. Being alone does not mean they are lonely. And in solitude, they do better at problem solving and calming themselves.

Also, since Asperger's kids do not usually have the best gross motor skills, they are not drawn to physical outdoor activities. They need a nudge to play sports or to go walking or biking. It is good for them to get fresh air and to exercise, if you are able to talk them into it.

7. WILL MY SON OR DAUGHTER EVER DATE OR GET MARRIED?

Asperger's kids are definitely late bloomers. Emotionally and socially, they are often a couple of years behind their peers while intellectually they are on par or way ahead.

Because social situations are a struggle for them and the basics of building friendships elude them, Aspies are usually slower to make the kinds of connections that lead to dating and long-term relationships. But yes, they can have relationships that turn into dating, and yes, they may marry.

Once they make friends, Asperger's kids and teens are loyal, truthful, and reliable. The grass is never greener. As adults, they are hard workers and can be solid, steady partners who earn a decent income. It will probably be the other person who makes the first move toward a friendship or romance because, by nature, people with Asperger's do not take the initiative. They will react, but they rarely reach out to people or take the first step themselves.

Parents of female teens with Asperger's should be aware that their daughters may be in danger of being taken advantage of by unscrupulous males, because these girls can't read between the lines. Dating language is particularly full of innuendo, murky meanings, and smooth talking. You will want to keep tabs on your Aspie daughter, and help put things in perspective as well as ward off possibly misleading situations.

8. ARE THEY GOING TO BE ABLE TO BE INDEPENDENT ENOUGH ONE DAY TO GO TO COLLEGE OR TO GET A JOB AND MOVE OUT OF THE HOUSE?

The short answer is "Yes, possibly." Many Asperger's teens are capable of learning enough life skills to be able to move out and live on their own ... eventually. With going to college or working at a job, there are so many variables that it is impossible to predict exactly when they will be ready. It all depends on the individual.

Often, they need to stay at home longer than your other children because they need extra time to mature and pick up organizational and other skills to make sure they can plan their days, feed themselves, do their laundry, and show up to classes or work on time. Going to a junior college the first two years and living at home is often best for some teens. This would ease the transition to higher education and give them time to take on more personal responsibility.

A set routine always helps. Asperger's kids prefer a predictable pattern in their lives because it gives them something to count on, something regular and unchanging to expect. The good news is that they will adhere to routine, which pleases employers and professors. Still, their safety is the main concern. They should not be expected to live on their own until it's certain that they can do so safely.

9. WILL THEY EVER TAKE THE INITIATIVE AND REACH OUT TO OTHERS?

No, probably not. Part of having Asperger's is being unable to take the initiative because they don't see things the same way as others do. They will need your help to coax them to call potential friends, or even existing ones, to ask them over. Or you may need to call the child's parent yourself and set up a playdate for your Asperger's child.

Talking on the phone is also very difficult for Asperger's kids because they cannot see the other person and there are slight delays in the transmission of voices. Even more debilitating is that they are very poor at making small talk to begin with. Add that to all the confusing details involved in making plans to get together with someone, and it just seems too hard to them to take that first step.

It's best to at least have your child practice dialing the number and start the invitation (with you on hand to feed some lines for them to say). Then you can ask to speak to the other parent to solidify the details.

10. WHY DON'T THEY TRY HARDER WHEN THEY ARE CHALLENGED?

Asperger's kids are prone to perfectionism. They are afraid to be wrong, so they won't do something if they think they may make a mistake. At Friends' Club, we try to help them understand that guessing is just that — a guess, which doesn't have to be right. Asperger's kids won't make a guess if they're not sure it's the right answer.

This perfectionist bent keeps them from predicting events or actions in stories. When their struggles comprehending abstract and referential ideas are added to their quest to be right all the time, predicting becomes even harder.

Ironically, their problem is not that they don't notice details. It's the opposite — they notice too much detail. This can also confuse them and prevent them from figuring things out, so they don't try.

GETTING THROUGH TO YOUR ASPERGER'S CHILD OR TEEN

As hard as it can be to understand someone with Asperger's, it's often even harder to be understood by someone with Asperger's. Taking a conventional approach rarely works because they are unconventional thinkers. They get tripped up by their social blindness and their inability to see another person's point of view. Asperger's kids have a hard time understanding what is upsetting you, why you want them to do something, or how they should behave.

Here are some tips that I'd like to share from my years of working with Asperger's children and teens, both at the Friends' Club and elsewhere. In order for you to help them make sense of their world, first you have to reach them. And to do that, you should know the following:

1. IF YOU SEE ODD BEHAVIOR, DON'T ASSUME THE WORST — INSTEAD, ASK THEM, "WHY?"

The younger they are, the harder it is to figure out what your Asperger's children are doing and why. That's because they don't always know themselves and often have fewer verbal skills. But know that they do have their own logic. What appears to the rest of us to be odd or quirky or makes no sense does, in fact, make perfect and logical sense to them, coming from their unique perspective.

So it's best to ask calmly, "Why?" or "How come you're doing that?" rather than criticizing or punishing them without asking. Once they've explained what they're up to, then you can understand their logic and let them know why that's inappropriate or impolite or is better done in a less obvious way.

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Excerpted from Quirky, Yes Hopeless, No by Cynthia La Brie Norall, Beth Wagner Brust. Copyright © 2009 Cynthia La Brie Norall, Ph.D.. Excerpted by permission of St. Martin's Press.
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