Aspergers Syndrome

Many people with Aspergers have one or many specific interests they devote almost all their time and energy to.  They become so involved that they can almost be a personal encyclopedia with their knowledge of this specific interest.   This can often been stressful on parents who are overwhelmed with the ongoing information flow as well as obsessive nature of their actions.

 We personally have gone through many such interests that have gotten to be overwhelming.  Rocks has been one that has never gone away with our daughter.  She wants to be a geologist.  She collects rocks.  Lots of rocks.  Infact many days she comes home with just pockets full of dirt!  We find them in her backpack.  We find them in the laundry.  Even when we try to limit her to only a few per day we still find rocks everywhere.  We are beginning to think there are no rocks left at her school because they are all at our home!  We had a small battle for about a year dealing with frogs.  Frogs came home from school and in from the backyard.  We were constantly having to track down loose frogs in the house.  We finally were able to rationalize the need to stop and leave them outside because we explained the harm that was being done to the frogs and that wasn’t her intent.

She has had many other interests that she continues to read about, watch documentaries on, and even research on the internet.  These are mostly scientific based.  Astronamy, dinosaurs, rocks and minerals, natural disasters, medacine, and antient societies are amoung her most favorites.  She loves to play outside collecting acorns, rocks, leaves and just digging around for bugs.  She also loves to string beads, make patterns with light bright pegs, sew, make scarfs with a special loom, organize trading cards, and play her gameboy and playing on the computer.  We have found all of these interests calm her and help her refocus.

A few key things to remember when dealing with special interests are:

1.  Remember this is a coping mechanism for them.  It can be a stress reliever and a way to focus.

2.  We must provide unconditional acceptance of their interest and help them to continue in a way that will be satisfactory to both of you.   If you try to totally do away with something they will just become anxious.   Just like with the rocks and frogs we had to set boundaries, but didn’t completly shut her off from the interest.  We provided solutions of how she can still participate without the problems.

3.  Be careful when using their “special interest” as a tool when disciplining them.  This again is their coping and focusing mechanism and taking this away can cause an even bigger problem then what you are trying to punish them for to begin with. 

Dysgraphia is a handwriting disability usually associated with a dificiency in fine motor skills.  This term “fine motor skills” refers to the ability to perform tasks that require a high degree of precision and manual dexterity.  Writing is one such skill.

Since motor skills dificiencies are an area often found in children with Aspergers you do often see many with poor handwriting.

 Fine motor skill activities are controlled by small muscle coordination.  Many fine motor skills need to be explicitly taught such as handwriting. 

We researched dysgraphia as well as asked our doctor about tools and techniques that would assist our daughter with her disability.  The suggestions given all are to help build muscle strength in the hands and brain to hand coordination.  Some things we have learned to help our daughter outside her normal dysgraphia classes with school are:

1.  Stress ball or “hand” exercise ball that requires them to squeeze and release.

2.  Playing video games that require rapid finger/hand movements with buttons (like a gameboy).  

3.  Teach them to type and practice to increase their speed.

4.  Practice writing sentences and increase the amount every week.

5.  Learn to play an instrument.  There is a large amount of finger and hand coordination needed to play an instrument. 

6.  String beads, knit, cross stich, sew. 

7.  Coloring, draw, paint or anything that requires the same grip as a pencil for writing.

8.  Using tools.  Hammering, using a screwdriver, gardening with tools all require a grip and muscular strength of the hands.

It is very important in receiving a proper diagnosis to have as much information as possible.   Even after they have received a diagnosis it is a good idea to keep a journal or update a list of actions, symptoms, daily struggles, improvements, etc.  This especially is helpful when you make changes such as medications, start a new school year, move, or other life changes. 

It is also important to keep a copy of all information you receive from anyone in regards to your childs condition.  This might include doctors and school officials.  You may actually be the only person who has ALL this information in one place and may need them for future reference.  If you do not currently have everything on your childs medical or educational history request it.  It is your legal right to have their information. 

Start a file in a filing cabinet or have a binder that has EVERYTHING in it.  Shot records, medications used and the dates.  This might even include doctors bills and insurance claims.  Also include I.E.P. records and accomodations from the school.   You might also start a file that includes names and references of doctors, support groups, books, and other resources you have received that you may not need or use now but might in the future. 

It also would be a good idea to get your Aspergers child to start doing their own documenting.  Give them a notebook to journal for their Aspergers.   We gave our daughter a “feelings journal” which was just a notebook that she had with her at school.  She uses it to write down what she is having a problem with that day.  It could be a sensory issue, being bullied, having a headache, or even just being frustrated with school work.  We discuss these with her to get a better idea of what she is feeling and how we can help her as well as discussing issues with her teachers.  We try to address repetative issues with her doctor. 

You will be your childs best advocate when it comes to Aspergers or other disabilities.  Your first job in raising a child with a disorder such as Aspergers is to get EDUCATED!  Then, you must also educate. 

Educate yourself.  Research online, purchase or check out books from the library on Aspergers as well as specific traits your child may have (social skills, motor skills difficiencies, sensory issues, etc.)  Also research medications as well as current events such as new research studies, drug studies, new dicipline techniques, etc.  Find yourself a good local or online support group for Aspergers.  Attend seminars.  Ask Ask Ask your doctor any and all questions you have and always try to have a list of questions when you go to your appointments. 

Educate your child.  Your child needs to understand their symptoms as well as having the feeling you are taking control to help them function in the world.  They will be much happier and willing to work with you if they feel you are in control and know what you are talking about.  Help them understand what they are feeling, why they might not fit in, why sensory issues bother them.  Help them to express their feelings and experiences with you openly.

Educate your family and immediate friends/neighbors.   Don’t hide behind a rock or be embarrassed about having a child with a developmental disorder.  The more people in your lives that know about the Aspergers diagnosis and the traits to be aware of the better!  If they know your child has difficulty in social situations they may be more willing to help and overlook things versus labeling them.  Explain your childs particular traits and ways you have learned to help them deal with problems.  Let them borrow books or forward websites that will help educate them.   Educating siblings is essential.  They can get it bad sometimes.  They are forced to live with and deal with this everyday and it can be very stressful.  Help them understand the traits of their sibling and that you are learning about and working with your Aspergers child to help them.  This will include needing their help, love and support.

Educate your school teachers, administrators and students.   With the amount of time our children spend in school they need and environment that helps not hinders!  Just like family and close friends your child needs those around them to know why they may be a little different and how best to help them.   Teachers and administrators especially need to be aware and watch for problems such as teasing, bullying, peer pressure, depression, aggression, and overall changes in their abilities or behavior.   Also share your books and websites with them.  They even have specific books about Aspergers geared to teachers. 

EDUCATE YOUR DOCTORS!  I personally will bring a list of things I have researched or heard about online to each appointment with my doctor.  I want to know about medications, other developmental disabilities, articles I have read about current research and so on.  My doctor is wonderful about stopping and explaining all of this to me and why it might/might not help my daughters situation.  If your doctor is not familiar with something ask them to research it or provide you with a contact who might.  As an advocate for your child you want to make sure all medications are considered so they receive the best for their symptoms.  You want the latest research and technology as well as proper and thorough diagnosis for your child.  Guide your doctors to learn everything they can to give your child the best care possible or find someone else!  More then anything, take a stand by letting them know you will continue to do your own research and educating to make sure they are providing the proper care for your child. 

Determining others needs or feelings through their facial expressions is a form of communication.  People with Aspergers Syndrome often have an inability to read facial cues and are not able to translate their meaning.  This is another area that can be taught to people with Aspergers. 

First you need to obtain a group of pictures of facial expressions.  These can be purchased from various places online or at bookstores.  These also could be taken with your camera and a few friends!  Start with the basics of sad, angry, happy, scared, etc.  Explain each part of the face and how it identifies the specific emotion.  For example when smiling the mouth is turned up, and the eyes are wide and “smiling” also.  Angry may have clentched teeth and squinted eyes.  Many expressions have more to do with the eyes then anything else.  Describe each picture in depth.  Then review the pictures like flash cards and have them identify each face.  While watching television have them identify the emotion of the people they are watching.   Once they have basic facial expressions down move to others such as confused, bored, excited, etc. 

Also explain the importance of the non-verbal communication of facial expressions.  Most people will not tell you how they are feeling, but you can “read” it on their face.

Social stories are available from various authors and can be researched through any bookstore or online.   Creating your own social stories will save you money, and allow you to address specific situations unique to your child.

Social stories should be written from the perspective of the child and be in first person.   Use vocabulary and wording for their level.  It should resemble the form and level of books they currently read or have read to them.   It should address motivation for specific behavior and why other behaviors are not appropriate.  Identify a specific problems (crying, fighting, tantrums, screaming, not sharing, etc.)  Also identify what may be causing these specific actions and what steps can be taken by them as well as those around them to fix the situation.  You now have the base for your story.

When writing be descriptive and provide as much detail about the situation as possible.  Try to give the prespective of others who may be involved so they can better understand how others see and react to their actions.  Make sure it includes the setting, problem, others reactions, and a solution.  Using pictures and illistrations can help also. 

Depending on the skill to be learned books should be reviewed often.  Daily if necessary until you see results.  Always praise even simple results. 

 We tried the “Help Me Be Good” series by Joy Wilt Berry.  We had purchased these while our daughter was a toddler and before she was diagnosed with Aspergers.  They became a very good tool once we realized her social skills problems.  Today at age eleven she still reads these books.  Each book has a specific topic such as teasing, fighting, lying, stealing, etc.  Each follows these same steps for explaining the situation, giving the perspective of others, and solutions.  Another popular author of social skills books and videos is Carol Gray with the Gray Center. 

Social skills difficiencies in Aspergers and Autistic children can be taught.  One really good tool is social stories.  What are social stories?  They are stories that provide accurate information about situations these children might find difficult or confusing.  They describe in detail and give information on social cues, reactions that might be given by others, suggest appropriate actions and reactions they should take in the situation, and other events that might occur.   This will help to increase their understanding and make them comfortable in given social situation.  

How does this actually help them?  They can better prepare and predict actions and opinions of others.  They give them perspective on how others are thinking as well as their emotions and behaviors.   They are more prepared for consistant and structured settings such as a classroom setting.  Social stories also allow them time to review and practice before the stress of an actual social interaction.  They can distance themselves and become prepared.     

Identify social areas they might need a social story discussion and either find an existing book or even make a story yourself to discuss the social topic.

.

The challenges faced having Aspergers Syndrome can be dramatically increased when you enter into an educational environment.  Public schools provide the added difficulty of social settings as well as the need to produce class work within a time frame which may be difficult for those with motor skills difficiencies or attention and focusing issues. 

First of all it is imparative that the school administrators, teachers and other staff who will be in contact with your child be educated as much as possible.  Even if they are familiar with Aspergers or Autism this doesn’t mean they are familiar with “your child”.  Being a spectrum disorder children with Aspergers will have and even display charactaristics of the disorder differently.  Make sure they understand your childs daily needs as well as explaining routines and changes in their environment.  Make sure an I.E.P. (Individualized Education Plan) is in place to accomodate your child where needed due to their disability.  I would also recommend checking with your child or even stopping by the school to check that these accomodations are being met.   

Second,  educating peers is also extremely important.  Try to enlist the teacher or other administrators of the school to help educate the other students when possible.  Most are unaware there is a disability and are more willing to accept and even help when they are understanding of the situation.  Bullying and teasing should never be tolorated.  Make sure your child knows to report any such situations to yourself or their teachers immediately.

Third,  take time to teach social skills including reading facial cues, gestures, and other non-verbal communications.   If possible get with a professional or group for social skills training.

Fourth,  find a support group.  Finding others to help share knowledge and stories will help all of you.  Many times you can find friends for your children because they will have simular interests and already be connected through having Aspergers. 

Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS) is a diagnosis often assigned to those who do not match a specific diagnosis of Aspergers or Autism. It is a condition on the Autism Spectrum and is assigned to those who exhibit some but not all the characteristics of Autism. Characteristics such as social skills problems, repetitive behaviors and sensory problems. They can behave similar to those with classic Autism or Aspergers. With them though one symptom may be much worse and other symptoms more mild.

There is no specific criteria to PDD-NOS and can often become misleading and confusing. Children were studied for levels of function in communication, daily living, social skills, IQ, the age they started talking and stereotyped activities. PDD-NOS children scored between those with Autism and Aspergers but had fewer autistic symptoms then them. They can be higher functioning, have more delayed language and fewer repetitive behaviors then those with Aspergers and Autism.

A PDD=NOS diagnosis should really be used when there is not enough clinical information to make an informed diagnosis otherwise. This might include very young children or those without proper medical documentation.

Http://aarr.stanford.edu/

http://www.autismspeaks.org/navigating/pdd_nos.php

An overwhelming amount of children referred for diagnostic assemssments for Aspergers Syndrome are boys.  Many researchers are finding that girls with Aspergers have the same traits and abilities as boys but are more subtle or maybe less sever in their characteristics.   It is said to be ten times more prevelent in boys then girls.  However researchers are suspecting that because Aspergers manifests differently in girls and may be less obvious they can slip through the cracks when it comes to diagnosis.   They also predict that as more girls are diagnosed the profile of the disorder and symptoms they look for will change as well.   Preliminary genetic studies also suggest that autism may be caused by different genes in boys and girls. 

 Girls may often be seen as having a passive personality at a young age instead of having a social impairment.  They may have less motor impairments, more obsessive interests,  and even though they have social skills problems they seem to want to connect with others more.  Girls obsessive interests are harder to identify though because they are common interests with most girls (horses, puppies, books).  Aspergers girls have more of an interest to fit in with those around them so they will study other girls to “copy” thier dress, behavior and actions.  What appears as shyness in girls is shrugged off as a common, sweet little girl trait. 

It is said that Aspergers in boys is hard to miss because they easily are identified as quirky.   They can have obsessive interests but often those interests are in one particular and even odd areas.  Boys have been observed as causing more disruptive behaviors in the classroom setting.   The appearance of shyness in a boy brings attention to their situation. 

http://www.newsweek.com/id/168868/page/1