Aspergers Syndrome: Frequently Asked Questions

Aspergers (high functioning autism) is an autism spectrum disorder (ASD) characterized by symptoms such as very focused or obsessive interests, deficits in social skills, and some language differences. Since two of my sons were diagnosed with Aspergers and I've written a little on the subject, I've been asked many questions about this confusing and misunderstood disorder.

What exactly is Aspergers, anyway?

As I said before, it's an autism spectrum disorder. Picture something like a number line in your mind; this is the "spectrum". At one end, you will have children who are completely non-verbal, have virtually no social skills or ability to interact with others, and are diagnosed mentally retarded. OK, before we go any further, make sure you throw out that old idea of "retarded" from your grade-school playground. Mental retardation (MR) is a clinical diagnosis; the textbook definition of "retarded" is slow, and most of us are retarded in one area or another. So if your youngster is on the spectrum (or isn't, for that matter) and has been diagnosed MR, don't sweat it too much. It is not a death sentence or something to be ashamed of. It simply is, and many children with MR have more common sense than those who are considered "gifted", and do quite well for themselves. Back to the spectrum-at the opposite end of your line, you'll have children with high IQs, a few quirky personality traits, and some mild social impairment. This is what classic Aspergers is. Most children with AUTISM SPECTRUM DISORDER will fall somewhere between these two extremes, and the symptoms of Aspergers can vary from person to person. Aspergers is a high-functioning AUTISM SPECTRUM DISORDER, which means the autistic symptoms are present to a lesser degree and most children with Aspergers are able to function normally, or almost normally, in society.

What are the symptoms of Aspergers?

Children with Aspergers tend to have very focused interests, and often seem to be obsessed with one or two subjects. These interests are often related to things with moving parts, like trains or automobiles, or how things are built, or fact-based things like history or numbers, but not always. Many younger youngsters develop interests in scientific things like dinosaurs or space. These interests may be life-long, or may change every few months or years. It can be frustrating hearing about the same subject over and over, but this focus is actually something that can work to a person's advantage. My older son has developed quite an obsession with history, especially WWII history, and he plans on channeling this into a career as an historian or a history teacher. Since children with Aspergers often have excellent memories, especially for things like facts and dates, they can become "walking encyclopedias". My son has been a great help in teaching his younger siblings about history, and he's the one who always reminds us whose turn it is to host different holiday celebrations each year. Of course then there are those times, especially when the youngsters are young, that you wish their memories weren't so good. There's nothing like having your little genius tell everyone at the Christmas party about something embarrassing you did when the kid was only two years old-and tell it with remarkable detail to boot.

Children with Aspergers also have somewhat impaired social skills. They may not understand the reciprocity of a relationship, or the "give-and-take." It may be hard for your youngster to understand that not everyone wants to play what he likes to play. It isn't a matter of being obnoxious or rude; it's just that he really doesn't understand that something that's fabulous to him might not be fabulous to everyone. This can tie in to the obsessive interests as well; he may not understand that not everyone really wants to hear a half-hour lesson on baseball statistics, and children with Aspergers often can't pick up on others' non-verbal cues that they are bored or disinterested. When trying to win the heart of a young lady, a teenage boy with Aspergers may try and woo her with the most fascinating subject he can think of. Unfortunately, she may want to talk about Fall Out Boy or what she should wear to the mall, not hear a tutorial on all the weaponry used in the first half of World War II. Children with Aspergers often fare better in one-on-one situations with friends or in very small groups. Both of my boys are very uncomfortable in group situations, especially those with unfamiliar people, but my older son - the "classic" case of Aspergers - deals with it much better than my younger son. A person with Aspergers, when placed in a large group or uncomfortable situation, may look like a typical person with an extreme case of shyness, looking down at the ground and not speaking to anyone. Often when a person with Aspergers becomes involved in a conversation that makes him uncomfortable, he will change the subject to one that he is comfortable with-there we are again with the interests-and ignore the other person's attempts to get the conversation back on track. When a youngster with Aspergers has two friends over to play, he may have a hard time paying attention to both and working with them to find activities they can all enjoy. He may have trouble understanding the rules of games, or accepting that he can't always win, just because he wants to.

Children with Aspergers sometimes appear to lack common sense. They may need to be told step-by-step how to perform a task many, many times before they get the hang of it. They may not be able to look at a situation and see what is the next logical step or they may follow directions a bit too exactly. My son baked a cake once, and the instructions on the box of cake mix said to bake it until a knife inserted in the center came out clean. He made the cake, and it smelled heavenly. After it was done he came to me looking distressed, because he couldn't figure out how to get the knife out of the cake without tearing the whole cake up. He had laid a knife in the center of the cake pan, in the unbaked batter, before putting it in the oven. Most youngsters at fourteen would know that wasn't the right thing to do, but he was simply following the directions as he read them.

Another symptom that often accompanies Aspergers is a range of sensory difficulties. The youngster with Aspergers may have a strong aversion to certain tastes, smells or textures. Conversely, he may seek out different sensory stimuli, smelling or tasting everything he comes in contact with. Certain sounds may be torturous to the Aspergers youngster's ears. There is a name for this condition: Sensory Processing Disorder (SPD), also known as Sensory Integration Disorder, and while it frequently is present in youngsters with AUTISM SPECTRUM DISORDER, it can also be present independently.

Youngsters with Aspergers often have a very strong need for routines and schedules. If the routine is broken, they may have "fits" or withdraw, or simply be pretty darn angry at Mom and Dad. My little one got grounded from the computer for being quite naughty, and all day Monday-his computer day-he was asking why he couldn't play. He's smart, he just couldn't get past the fact that it was his computer day and he wasn't playing. We've had to rethink that particular consequence for him. Children with Aspergers frequently like things to be "just so", making them great little organizers and helpers. If you need that silverware drawer organized, you know who to ask.

A person with Aspergers may also exhibit clumsy or uncoordinated movements. He may have an awkward-looking gait or, like my little guy, look like a marionette when he runs. Hand-eye coordination may be a problem in children with Aspergers, along with some fine- and gross-motor delays, although these are usually not significant.

One thing that is often present in children with Aspergers is high IQ and advanced verbal skills. While the person with Aspergers may have talked early and have an extensive vocabulary, he may not understand sarcasm or figures of speech, like "It's time to hit the road" or "I put my foot in my mouth". My oldest son and his father have almost a brotherly relationship at times, picking on each other about opposing football teams and their differing tastes in music. My son knows he doesn't get things sometimes, and will actually stop his dad mid-debate and say "You know I can't tell when you're teasing me; you have to tell me!" So Dad says "All right, you're about to get picked on" and Dylan knows it's time to bring out the zingers about the Steelers' last season. It may also be hard for someone with Aspergers to get the point of a joke, or to know when it's appropriate to say certain things. You may have to give lots of reminders to the adolescent that just discovered dirty jokes, that Grandma's house is not the place to share them. He may take things very literally-if dinner is in a minute, it better be in sixty seconds exactly or you'll hear about it. Moms and dads of youngsters with Aspergers sometimes feel as if they've had to learn a whole new language, losing the idioms and slang expressions we're all so used to.

Some children with Aspergers may have all of these symptoms; some may have just a few.

When did you first see the signs of Aspergers in your youngsters?

This is difficult to answer; I knew my younger son was different since birth, and though he is diagnosed with Aspergers, some of his behaviors place him lower on the spectrum. I was unsure of what was up with him, and it took a series of evaluations, starting when he was in kindergarten, before we came up with a diagnosis that somewhat fit. Bear in mind that the only purpose of a diagnosis or label is to obtain services. You may not want your youngster 'labeled', but if you want help for him, it's a necessity. If I had known the signs and symptoms of Aspergers when my older son was small, I probably would have seen it when he was in elementary school. He was diagnosed with Tourette syndrome at age six (fortunately it's a very mild case) and I believe misdiagnosed with ADHD at the same time. While ADHD can co-exist with Aspergers, looking back I can see that the ADHD behaviors were actually a symptom of his sensory difficulties. We only had him re-evaluated a few months ago, because new issues appear with adolescence. I want his behavior to be understood by his professors when he goes to college, and I also want him to be able to understand his differences (he is very aware of them) and know that there is a medical reason for them.

How is Aspergers diagnosed?

As of now there is no definitive test, like a blood test, for Aspergers. If you suspect your youngster has an AUTISM SPECTRUM DISORDER, take him to his pediatrician for a thorough check-up. My younger son was sent for a full metabolic workup to eliminate a physical cause for his behaviors, and then sent to a developmental pediatrician. Your primary doctor may be able to diagnose Aspergers, or it may take a trip (or a few) to a developmental pediatrician or psychologist. We were given a form to fill out called the Gilliam Asperger Scale, which contained many, many questions about the youngster's behavior and symptoms. If your youngster is in school, a form may be sent for the teacher to fill out as well. The form will be scored and if your youngster scores as "a high probability for Aspergers" and the doctor's observations concur, then you'll likely be on your way to a diagnosis of Aspergers. At the visit you'll be asked a lot of questions, as will your youngster, if he is developmentally able to answer. The doctor will observe the youngster and may administer some play-type tests. The diagnosis of Aspergers is basically done by process of elimination-if the test and observations indicate Aspergers, and there is nothing else that is causing the symptoms, you have an Aspergers diagnosis. Your doctor may want to monitor the child for a while before making the official diagnosis.

What can be done to help the child with Aspergers?

There is no cure for Aspergers or autism. Some moms and dads swear by nutritional changes or supplements but none of that has worked for us. Your doctor may refer your youngster to an occupational therapist (OT) to address any sensory issues. Some areas have social skills groups for youngsters that could be very beneficial. Try and stick to your routine as much as possible and warn your youngster as far in advance as you can when something is going to change. It is important to have some change, though; things don't run like clockwork in the real world and you have to try and get your youngster to be a bit less dependent on his routines and schedules. If your youngster has an OT, ask her or your doctor about brushing to calm your youngster. Known as the Wilbarger Protocol or Wilbarger Method, brushing is just what it sounds like-brushing the youngster's arms, legs, hands and feet with a small surgical brush. You will need a professional to show you how to do this, along with the joint compressions that go along with it, but it was well worth the time for us. It only took my son's OT a few minutes to demonstrate the technique, and as odd as it sounds, it really works for us.

Where do I go for help?

Online Parent Support has been an invaluable resource for me. They offer support groups, parent-matching (where a parent of a newly-diagnosed youngster with a disability can be matched with a parent who has been through it), informational meetings, and a wealth of information through their library, handouts, and knowledgeable staff. Most states have a Family Support Network or similar programs; check with your pediatrician or department of social services for a list of services for moms and dads. The Autism Society also has many resources for moms and dads of youngsters on the autism spectrum. Look in local papers for lists of support groups and services. If your youngster is in school, the administration there may be of help. Remember that your youngster has a right to a good education and you have the right to be involved in the decisions about his education. If you have problems, the autism society should be able to refer to you the right place for help.

Will my child with Aspergers be OK?

YES! Raising a youngster is never easy, whether they come with some kind of syndrome or not. Aspergers is not fatal or physically debilitating. Children with Aspergers often grow up to be doctors, scientists, teachers, musicians, custodians, laborers, lawyers, artists, heads of huge computer companies worth billions of dollars...yes, Bill Gates is rumored to have Aspergers. So are many other famous people, including Einstein and Andy Warhol. Be aware that there are other disorders such as Tourette syndrome, ADD, OCD and depression that can accompany Aspergers, but they don't always, and all are treatable; millions of people live with these things every day and lead happy, productive lives. Focus on the positive things, be there to support your youngster, learn as much as you can about Aspergers, become an advocate, and your youngster will have every opportunity to succeed.

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