facesofaspergers

An Open Invitation

2008-01-04T10:22:00.000-08:00

An Open Invitation:
With your help, I hope to build a large collection of profiles on individuals with Asperger's Syndrome.

My nephew was diagnosed with Asperger's Syndrome about one year ago. He is now four years old. I have made this website to better understand him and to help others better understand Asperger's Syndrome. I am hoping that this questionnaire will help with both! Thank-you all in advance for your help!!

If you or someone you love has autism or Asperger's syndrome, I'd like to hear from you. Please try to answer the following questions as accurately as you can. Either e-mail your responses to me at "derin417670@aol.com or post your responses under comments on this post and I'll make a new post about you or your loved one as soon as I get a chance.

1) Are you answering these questions for a loved one with Asperger's Syndrome? If so, what is your relationship with him or her? Please provide your name(s) and location(s) in as much detail as you feel comfortable with. I would love it if you could include a photo, also!!

2) Please define Asperger's as concisely as you can. No dictionaries please; I'm looking for your understanding of the word. What would you like the world to know about Asperger's?

3.) When were you or your loved one born? Diagnosed with Asperger's Syndrome? Have there been any other diagnoses?

4) Please describe social skills of you or your loved one.

5.) Please describe linguistic or language skills.

6.) What sort of therapies have you or your loved one tried? Have they helped over time? If so, how? Please describe any medications and their effects as best you can recall.

7.) What are some of your or your loved one's biggest difficulties today?

8.) Have you or your loved one made any special achievements you'd like to mention?

9.) What have you learned from your experience with Asperger's? Have you formed a philosophy or taken away any life lessons?

10.) What has been the greatest challenge for you or your loved one? The greatest reward?

11.) Is there anything else you would like to add about your experiences with Asperger's?

Thank-you so much for your participation! Tell your friends about this site!! Colleen

Straight Talk from an Aspie

2008-01-02T11:50:00.000-08:00

Some Extremely Reasonable Suggestions for "Typical" Parents, Family and Teachers on Behalf of Kids with Asperger Syndrome by Jennifer Mcllwee Myers (Aspie at Large)

1.) PLEASE don't try to make us "normal". We'd much rather be functional. It's hard to be functional when you have to spend all your time and energy focusing on making eye contact and not tapping your fee.

2.) PLEASE don't overprotect, indulge, or cosset us. We already have enough social problems without additionally learning to be spoiled and self-indulgent.

3.) DON'T teach us social skills according to how you wish the world was, or even how you think it is. Look carefully at what is really going on and teach us real world rules.

4.)DON'T talk and act as if your life would be perfect or soooo much easier if you had a "normal" child. We don't thrive on knowing that we are the children you didn't want.

5.)DON'T make the mistake of thinking that teaching us typical behaviors and successful masking means we are "cured". Please remember that the more typical our behavior seems, the harder we are working. What is natural, simple behavior to you is a constant effort for us..

6.) PLEASE don't punish us with rewards or reward us with punishments. For those of us wh find recess to be the most stressful part of school, any action that will keep us in from recess is one we will learn to repeat ad infinitum. Betting rewarded for good behavior with fashionable, but really itchy clothing will train us to NOT behave too well!

7.) If you assiduously train us to imitate and conform to other children's behavior, don't be shocked if we learn to curse, whine for popular toys, dress in ways you don't like, and eventually drink, smoke, and attempt to seek out sex as teenagers. Those "nice kids" you think so highly of do a lot of things youu don't know about. Or don't you remember high school?

8.) Please DO give us information about autism/Asperger's Syndrome early on at a level we can digest. We need to know what's going on and we will figure out that something is "wrong" with us whether you tell us or not.

9.) DON'T avoid a diagnosis or help for us because you are scared of us being labeled. Without that diagnosis and appropriate support, our teachers, family, and fellow students will give us plenty of labels and we might just believe them if we hear them often enough.

10.) DON'T force us to do things we can't do. A forced social situation won't teach us social skills any more than dumping us in the middle of the Pacific Ocean will teach us to swim.

11.) DON'T punish us for what other kids do. The fact that other kids tease and torture us for benign "autistic" or Asperger" behaviors doesn't mean WE need to change, it means THEY do. Needing to bounce or swing for the whole recess is not morally wrong; tormenting someone for having a neurological disability is.

12.) DON'T attempt to use humiliation or public embarrassment to "teach us a lesson". We get way too much of that from other people, and the only lesson learned is that we can't trust you, either.

13.) DO punish us (or give us "consequences") when it is necessary to do so - but make the connection between cause and effect very, very clear. We often need visual aids to understand how out behavior can cause an unwanted result for us!!!

14.) DON'T cut us too much slack when our behavior is potentially dangerous to us. For example, adolescent pre-stalking behavior should result in serious consequences. Not treating such behavior seriously when we are young can lead to problems involving law enforcement when we're older.

15.) DON'T trust untrained camp counselors, "typical" peers, or youth pastors to be able to deal with Asperger's Syndrome. Often their answers to our problems involve highly destructive phrases, like "try harder", "you could do it if you really wanted to", and "snap out of it".

16.) DON'T model one thing teach us another. If you yell or hit when you're angry, we will too. If you rage at us, don't be shocked at our "autistic" rages. DON'T lecture us about our stims while youu smoke, tap your foot, pick at your manicure and down your third double-latte today.

17.) DON'T require us to be wildly successful at something because your ego has been wounded by having a "flawed" child. We can't all be Temple Grandin. Remember, all honest work is noble, even if you can't brag about us to your friends.

18.)DO spend time with our siblings, even if you need to arrange for respite care to do so. Schedule something special for them without us along, even if it's just lunch at a fast-food joint once a week or so.

19.) DO ask for help for yourself as needed. Take advantage of respite care when you can. Get cognitive-behavioral counseling and/or medication when you are depressed. Don't try to do it all alone. Remember it is much more important that you get a nap and a nourishing meal than that we have a clean house.

20.) Most important: please, please please DON'T wait until we're "cured" or "recovered" to love and accept us. You could miss our whole lives that way.

Bullied on a Daily Basis

2007-12-30T07:06:00.000-08:00

Kids With Asperger's Syndrome: 'Bullied on a Daily Basis'

By JOHN DONVAN, CAREN ZUCKER and ERIC JOHNSON
April 4, 2007 —

Growing up, Daniel Corcoran was the odd kid at school. He wasn't slow, but his coordination was off, and he tended to obsess on certain subjects, like light bulbs and air conditioners. At the time, his preoccupations with random objects seemed quirky, but harmless.

But when Corcoran entered middle school, his quirks were not accepted by many of his classmates and his life became a social nightmare filled with name calling and other cruelties.

Corcoran is now out of middle school and a sophomore at Ramapo College in Mahwah, N.J. His uncomfortable encounters persist, especially after taking the dangerous step of "coming out," as he puts hit, with his condition. Corcoran has Asperger's syndrome, and his decision to announce the disorder yielded mixed results from his peers.

Asperger's syndrome is characterized by social isolation and eccentric behavior during childhood. "It means my brain is different," Corcoran said.

Twelve-year-old Noah Orent also has Asperger's, and like Corcoran, he's mild-mannered and began to get bullied at an early age.

"I was just merely called 'Game Boy freak' or stuff. There was one kid that was the worst. He just called me names and he was not nice," Noah said. "He was mean -- mean to the bone. I was so mad that I couldn't let out my anger. I was just like hiding it. I just didn't feel like being at that school anymore."

'Bullied on a Daily Basis'
Noah is not alone, and some school systems are working on a solution to the social angst that affects many with the disorder. Jed Baker, a psychologist who works with many kids with Asperger's, found out the situation for kids with the disorder was very severe.

"In some areas, there have been reports of 90 percent of kids with Asperger's are getting bullied on a daily basis," he said.

Baker consults for the Milburn New Jersey Middle School, which has stepped up its focus on children with Asperger's and other conditions. His primary mission is to build a healthy social network of these kids. At Milburn, he partners children with Asperger's with volunteers from the student body.

"Building social skill groups, where we're creating an atmosphere of an accepting peer groups so these kids don't feel isolated," Baker said. "They have people who are at least friendly to them."

Working with what were once called the "uncool kids" has become a cool thing to do, and kids like Noah don't get picked on. "I was learning about basically just how to make friends and stuff," Noah said. "I mean, at my old school I never had many friends."

"When we moved, I was so happy to be finally away from them. I felt better," he said. "So then I started here and now I'm having a lot of friends. I like the school, the staff, even Dr. Baker. And I'm having a good time."

'Trying Too Hard'
As for Daniel Corcoran, it's too late to go back to middle school, but he's grown content with where he is now.

"I couldn't be happier, you know," Corcoran said. "I could be, but I mean this is, I haven't felt like in this amazing frame of mind since who knows when. It seems like all dreams start to come true."

And while he has grown up in many ways, he still sometimes has bad days. Women and romance now perplex Corcoran as much as the bullies who once tormented him, and the Asperger's is sometimes to blame.

"The thing that I realized -- I have to stop doing what's called trying too hard," he said. "Trying to force a conversation with a girl even if she's not fully interested in talking, asking too many questions, showing signs of being nervous, maybe."

Corcoran said he was building the confidence that was often absent in those with Asperger's.

"As long as I stand my ground, and I am who I'm supposed to be, and I get to love myself for who I am -- others are really really going to love me too," Corcoran said. "I really do think some people are going to like me. And I'm convinced I'm going to meet somebody really special one day."

If Corcoran can picture that day, so can those who have known him all his life. Fitting in while standing out -- it isn't always easy for anyone but some have to work harder to get there.

Copyright © 2007 ABC News Internet Ventures

Sleep Problems in Children with Aspergers

2007-12-30T06:51:00.000-08:00

Children With Asperger Syndrome More Likely To Have Sleep Problems

ScienceDaily (Nov. 21, 2007) — The first known attempt to evaluate the sleep patterns of children with Asperper Syndrome (AS), taking into account sleep architecture and the cyclic alternating pattern (CAP), finds that children with AS have a high prevalence of some sleep disorders and mainly problems related to initiating sleep and sleep restlessness together with morning problems and daytime sleepiness, according to a new study.

The study, authored by Oliviero Bruni, MD, of the Center for Pediatric Sleep Disorders at University La Sapienza in Rome, Italy, focused on eight children with AS, 10 children with autism and 12 healthy control children. The parents of the children with AS filled out the following materials:

Sleep questionnaire.
Pediatric Daytime Sleepiness Scale, which evaluates the relationship between daytime sleepiness and school-related outcomes.
Autism Diagnostic Observation Schedule, a semi-structured, standardized assessment of communication, social interaction and play or imaginative use of materials for individuals who have been referred because of possible autism spectrum disorders.
Child Behavior Checklist, a questionnaire used to examine daytime behavior in children.
In addition, the children took the Wechsler Intelligence Scale for Children, which measures verbal IQ, performance IQ and a full-scale IQ, and also underwent an overnight polysomnogram, or sleep study.

Several sleep parameters, such as time in bed, sleep period time, number of awakenings per hour, and sleep efficiency, were evaluated. CAP, a periodic EEG activity of non-REM sleep characterized by repeated spontaneous sequences of short-lived events (phase A) with the return to background activity identifying the interval that separates the repetitive elements (phase B), was also scored.

According to the results, 50 percent of the children with AS were reluctant to go to bed, while 75 percent felt a need for light or a television in the bedroom, 87 percent had difficulty getting to sleep at night and 75 percent fell asleep sweating. In addition, 50 percent felt unrefreshed when waking up in the morning, 87 percent had difficulty waking up in the morning and 87 percent felt sleepy during the day.

With respect to the CAP, in comparison to healthy controls, subjects with AS showed a lower total CAP rate in the first two sleep stages, but not in slow wave sleep. In addition, they showed an increased percentage of synchronized EEG patterns and a decreased percentage of desynchronized EEG patterns. Further, the duration of the A and B phases, and consequently the entire CAP cycle, was longer. Compared to the children with autism, AS subjects showed an increased CAP rate in slow wave sleep and a decrease in the second sleep stage. The duration of the A phases was longer, as well as the CAP cycle duration.

"This study showed peculiar CAP modifications in children with AS and represented an attempt to correlate the quantification of sleep EEG oscillations with the degree of mental ability or disability," said Dr. Bruni.

AS is one of several autism spectrum disorders (ASDs) characterized by difficulties in social interaction and by restricted and stereotyped interests and activities. AS is distinguished from the other ASDs in having no general delay in language or cognitive development. Although it is not mentioned in standard diagnostic criteria, there are frequent reports of motor clumsiness and atypical use of language.

It is recommended that children in pre-school sleep between 11-13 hours a night, school-aged children between 10-11 hours of sleep a night, and adolescents about nine hours a night.

The American Academy of Sleep Medicine (AASM) offers some tips to help your child sleep better:

Follow a consistent bedtime routine. Set aside 10 to 30 minutes to get your child ready to go to sleep each night.
Establish a relaxing setting at bedtime.
Interact with your child at bedtime. Don't let the TV, computer or video games take your place.
Keep your children from TV programs, movies, and video games that are not right for their age.
Do not let your child fall asleep while being held, rocked, fed a bottle, or while nursing.
At bedtime, do not allow your child to have foods or drinks that contain caffeine. This includes chocolate and sodas. Try not to give him or her any medicine that has a stimulant at bedtime. This includes cough medicines and decongestants.
Children are encouraged to inform their parents of any sleep problems they may have. Parents who suspect that their child might be suffering from a sleep disorder are encouraged to consult with their child's pediatrician or a sleep specialist.

The journal article, entitled, "Sleep Architecture and NREM Alterations in Children and Adolescents with Asperger Syndrome", was published in Sleep November 1, 2007.

Adapted from materials provided by American Academy of Sleep Medicine.

Real-life stories from "Aspies" and friends!

2007-12-29T10:43:00.000-08:00

Stevie's Visit to Santa

2007-12-28T17:46:00.000-08:00

My sister took my nephew to see Santa Claus. He is four years old. When Santa asked him if he had been good, Stevie said, "Well, I guess I've been both good and naughty." Asperger's kids are so genuinely honest!!
On Christmas morning, when Stevie saw his presents underneath the Christmas tree, he breathed a huge sigh of relief and said, "Well, I guess I was good after all!"

The Hidden Curriculum

2007-12-28T06:36:00.000-08:00

The Hidden Curriculum
One important social skills area that has long been neglected is the hidden curriculum - the do's and dont's are not spelled out for everyday behavior, but somehow everyone knows about them, except children and youth with Asperger's.
The Hidden Curriculum includes skills, actions, modes of dress, and so on, that most people know and take for granted. Every school and every society has a hidden curriculum. This unspoken curriculum is the one that causes challenges and grief for those with Asperger's.
Examples of Hidden Curriculum Items:
1.) Do not tell the principal that if she listened better, more kids would like her.

2.) You should not have to pay students to be your friends.

3.) Do not talk to other kids in the classroom when the teacher is giving a lesson.

4.) When the teacher is scolding another student, it is not an appropriate time to ask the teacher a question.

5.) When you are with classmates you don't know very well and you are the center of attention, do not pass gas, pick your nose, or scratch a private body part.

6.) During a fire drill, go with your class to teh nearest exit. This is not the time to go to the bathroom or to ask to go to the bathroom.

7.)Do not tell classmates about all of the "skeletons in your parents' closet."

8.) Do not draw violent scenes in school.

9.) During a conversation, fact the speaker and position your body in that direction.

10.) Speak to teachers in a pleasant tone of voice because they will respond to you in a more positive manner.

11.) When your teacher gives you a warning about behavior and you continue the behavior, you are probably going to get in trouble. If you stop the behavior immediately after the first warning, you will probably not get into trouble.

12.) If one of your classmates tells you to do something you think might get you in trouble, you should always stop and think before acting. Friends do not ask other friends to do things that will get them in trouble.

13.) Not all teachers have the same rules for their class. Some teachers do not allow any talking unless you raise your hand. Others may allow talking if you are not disruptive or annoying other students. It is important to know the rules different teachers have for their classes.

Taken from:Myles, B.S. & Simpson, Rich. (2001). Understanding the Hidden Curriculum:An Essential Social Skill for Children and Youth with Asperger Syndrome. Intervention.