Aspergers Syndrome

This is my newest phrase to myself and close family members lately:  “Your Aspergers is showing!”.

What do I mean by that?  Let me give you a little history.  Our daughter was diagnosed a few years ago with Aspergers Syndrome.  Needing more information I searched the internet for tools, books and information.  I stumbled across a site which had a book by Tony Atwood called “Aspergers and Girls”.  When I went to buy the book I noticed that Tony himself would be in town for a seminar on Aspergers that month.  I attended the all day seminar and it was worth every penny!

One of my favorite points that Tony Attwood mentioned in his seminar also has become a very helpful tool in explaining Aspergers Syndrome to others, especially when they ask if it is a hereditary trait.  Tony explained Aspergers as a 100 piece puzzle.  He said people with Aspergers Syndrome have 80 or more pieces of that puzzle.  He then explained that family members may not have Aspergers Syndrome however may have pieces of the puzzle but not enough to be considered Aspergers (20,40, 60 pieces or so but not the full 80 or more). 

I now am able to identify Aspergers “traits” within myself, and family members.  I also have noticed them in other people.  I have shared this with teachers as I have constantly advised them to get educated on Aspergers and Autism for now and the future.  I explain that even if they do not have a child with Aspergers they can always benifit from knowing how to deal with specific “traits” that will pop up.

This is where the “Your Aspergers Is Showing” phrase comes from.  I tell myself this at times and even mentioned it to family members as I see them saying or doing things that have the Aspergers traits. 

Is your Aspergers showing?  How many puzzle pieces do you think you have?

Parental fears of a diagnosis!  Nothing is worse then feeling like you require a degree in medacine or science to understand and explain a medical diagnosis your child has.   When you do not feel you adequatley know enough to help your child with daily life or even explain to friends and school officials their condition and needs it can be extremely overwhelming and stressful. 

I personally have spent many days in stress and tears trying to figure out what is happening with my child, how to communicate best with her, why she does specific things, and to try to put myself into her world.   I also had difficulties in preparing to sit down and discuss with doctors and school officials who use “official and highly educational” terms that can be very intimidating.  I learned I just had to ask questions when I didn’t understand something and stand firm until I understood and was satisfied with what was being discussed.  Having support groups in your area or an online support group can help with this.  My online support group discusses many of these topics and usually someone is either going through it also or has already been through something simular.  The key is always in education wether for yourself or for others. 

 We had many concerns about our daughter from a young age but as many parents do we were reserved about getting her medically diagnosed and “medicated” as so many children are.  At first it was just the feeling she may have ADHD and we did eventually get her diagnosed and on medication for ADHD in the first grade.  Our adventures with her continued into the end of her third grade year with the realization she had dysgraphia which is a handwriting disability.  A year later we were able to link the dysgraphia to Aspergers Syndrome because of the common motor skills difficiencies associated with Aspergers.  She was eventually diagnosed as being Aspergers by the end of fourth grade.

Our experience with each of these steps has lead us down a path of exteme online research, book reading, seminars, down to now sharing this research and experiences as a blog.  I personally have struggled trying to understand the diagnosis of Aspergers.  It is still fairly unfamiliar to the public in general and usually has to be explained.  Most people have heard of autism but if you tell them it is a form of autism you then have to explain the differences and how Aspergers is a high functioning form of autism.  I usually have to give three or four of the general charactaristics of Aspergers when explaining them so people get a general idea of how they are different between typical children to those with autism.  I found that I had to arm myself with an encyclapedia of information because people want to know more.  Even though my daughter may not display all charactaristics I feel it is also my duty to help educate others about Aspergers Syndrome. 

Motor skills deficiencies and clumsiness are often the traits noticed first in children with Aspergers Syndrome. Aspergers is a neurological disorder that can cause developmental delays with motor skills.

Occupational Therapists can often work with developmental delays through techniques and exercises giving added strength and coordination. Some examples of motor skills difficulties and clumsiness to watch for are:

1. Has a peculiar or awkward walk or run

2. Poor balance

3. Difficulty in coordinating extremities (tying shoes, riding bike)

4. Difficulty imitating someone/something

5. Difficulties in skipping

6. Difficulty throwing or catching a ball

7. Poor handwriting, coloring and even cutting skills.

8. Has unusual grasp on pencil

9. Not enough pressure when writing or drawing

10. Rushes through tasks involving fine motor skills

My daughter suffers from dysgraphia which is in the dyslexia family and is a handwriting disability. We noticed the size, spacing and technique in her writing was severely lacking. She is currently working with a school district instructor daily working on writing techniques and hand exercises.  She also has the “clumsy” running, dancing, and ball catching difficulties.  Although overall she crawled, walked and talked early looking back we do notice motor skill difficulties that were present. Identifying and seeking treatment early can dramatically help children learn the necessary skills they will need as they enter into the school years.

Children in general can be disorganized and their rooms cluttered.  This is a part of maturing and learning responsibility.  However, many children with learning and developmental disabilities such as Aspergers or ADHD continue to have problems with organization.  This can also include remembering tasks.   They often appear off task or easily distracted by both internal thoughts and external stimuli.  Tasks often are overwhelming as a whole and can cause a child to panic or melt down as they try to organize in their mind how to tackle them. 

Organization is a basic need for school, home and work environments.  Just as with anything else in life there are always consequences to our actions.  Helping them understand these consequences can often help motivate them to work harder.   If homework assignments are not properly put in their folder for school they may be lost and get a failed grade.  If their clothes are not put in the laundry they will not have clean clothes.  The child must identify there is a problem before they will be willing to deal with it.   Don’t assume they know or care about consequences until things have been fully explained and they truly understand.   

A highly structured environment is often needed.  Giving time limits for assignments/tasks, checklist for tasks, daily schedule, step by step directions for tasks, calendar of events/activities, color coding school folders, provide a homework assignment notebook are a few things that can help.  Sometimes having a folder for “to do” work as well as “completed” assists them in organizing.  Discuss with teachers options to help a child who struggles to stay organized with class notes or even assignments.  

It is important to simplify each task.  Teaching these children to break it down into smaller steps will help them stay on task to accomplish one part at a time.  Instead of being overwhelmed by all their math problems take it one math problem at a time.  Instead of cleaning their whole room assign one thing at a time such as picking up clothes first.   Make a chore chart or checklist and post it in their room of things to do before they go to bed.  Break assignments up by days (one day put away all toys, next day pick up all clothes). 

I have become my daughters “personal secretary”.  I have to stay in touch with her teachers on assignments by email, phone and checking their websites.   Because of Aspergers she is extremely unorganized and also forgets homework assignments.  I regularly help her clean and check her backpack which can often look like a trashcan with whads of paper instead of assigments properly placed in folders.  This has become a teamwork effort as she and I work together to organize for her.   I know she may always struggle with organization but we tackle things one thing at a time and try to stay structured.  By staying informed about her assignments and making checklists I can make sure everything is taken care of, but still allow her the opportunity to remember and try to be organized on her own.   

 Trying to fit in and being bullied are things all children face. These are also areas that children with Aspergers struggle with daily. In his book “Aspergers and Girls” Tony Atwood discusses the topics of bullying and teasing. Although he discusses the interactions between girls in this book much of the material still applies to boys as well.

One trait with Aspergers is the inability to analyze social situations, read facial cues, or even be aware when situations aren’t as they might appear to be. Joking and sarcasm are often misunderstood and taken literally. These social cues can be learned by people with Aspergers but usually don’t come intuitively. Teaching using social stories, watching movies and commercials and even “people watching” in public can help show social situations and what facial cues and body language are being used between people. When trying to make friends and fit in teaching body language is essential. They must learn what clues are saying “I am friendly” or “don’t bother talking to me”. They also should be aware of their own body language to know how to look approachable and friendly. Observe their interactions with others and discuss privately what may be inappropriate and what may be more appropriate in the future.

In Tony Atwood’s book “Aspergers and Girls”  he lists a few books that can help in explaining fitting in, making friends, bullying, teasing, and more. Some are the award-winning American Girl books called “The Smart Girl Guide to Friendship Troubles”, “Guide to Sticky Situations” and “Guide to Middle School”.  Another book is called “Queen Bees and Wannabees” which the movie “Mean Girls” was based on.

Bullying can sometimes be relentless and is really intimidating. Obviously there is physical bullying but can also include gossiping, rumor spreading and cattiness. The Aspergers child may be totally unaware of the bullying or what it means. This can change at any time though. Other times they are completely aware but lack the social skills to know how to handle the situation correctly. Many can begin acting out at others, cry, turn inward, act childish, or become depressed. Many times they will not report bullying and teasing because of their inability to deal with the situation. They are needing help but may be unsure how to get it because they are not able to fully explain the situation. Asking children/teens about their friendships, daily interactions and even directly asking if anyone is teasing or bullying them is something parents and teachers need to do often.

Teasing is usually about something the recipient is insecure with or in this situation about a disability. Teasing can also be relentless and cause humiliation. Gossiping usually accompanies teasing and turn into rumors that can become hard to clear up or stop.

Explain when teaching  social skills that those who bully, tease or gossip are trying to bring attention to themselves at the expense of someone else. They may have self esteem issues, want to build “power “for themselves, establish status and respect out of fear, or just be insecure. Also give them ways to receive help if they are being bullied or teased. They should always feel comfortable talking with their parents. Establish with teachers and school administrators your concerns so they can watch for problems and also be available to talk to. Depending on the situation parents of the other children may need to be called for a discussion and be made aware of the events.

We have been fairly fortunate with our Aspergers daughter.  She is in advanced classes at school which means every year she ends up with the same advanced classes students. They have had time to get to know her and her quirks. Teachers have even reported these students stand up for her and watch out for her. They have been observed gently aiding or correcting her when needed. She has had a few minor situations with teasing/bullying which have been dealt with by school administrators.  Our doctor made us aware that although she does not display depression now as she grows and becomes more aware of the social atmosphere around her she very well could become depressed as many Aspergers children do. Watching and monitoring her social interactions closely, discussing her feelings, and teaching social skills is the key.

Many people with Aspergers Syndrome have motor skills difficulties.  One of those motor skills is handwriting.  This is also known as dysgraphia which is a form of dyslexia but affects the handwriting instead of reading.  Dysgraphia in dictionary terms is a deficiency in the ability to write even with the ability to read.  It is not due to any intellectual impairments.  Although on some level they can usualy write there still is a lack of coordination.  There also a lack in basic spelling skills.  Often “p,q,b,d” are difficult and the wrong word can be written when trying to formulate thoughts on paper.  Dysgraphia will appear as inapproprately sized and spaced letters, writing incorrect or mispelled words even when instructed.  There may be other learning disabilities present but usually academic problems are not present.  When tested for dysgraphia it is found that their writing skills are substantially below those expected for their age, measured intelligence and age appropriate education.

Our daughter was diagnosed by the school district in 3rd grade as having dysgraphia.  At first we thought she was either rushing her work or being lazy.  Her writing looked worse then a kindergartener and even she had trouble reading it.  She often complained of her hands hurting after long writing assignments.  When diagnosed she was given weekly time with an instructor from the school district who worked with her on visualizing space and size of letters.  She learned the “feel” of each letter as it is written.  Although when writing slowly she can now form decent letters, her speed is obviously lacking to keep up with grade level work.  Most doctors will suggest writing instruments and computers for most of their work because of the time involved as well as pain in the hands that often occurs when writing.  We were able to meet with our school for a 504 plan meeting (Texas).  Here we discussed with the teachers, principal, district representative and myself all the things we felt she needed accomidations for at school/home.  She was provided access to a computer for almost all assignments.  She also is given copies of notes and transparencies so she isn’t having to copy them.  Many assignments were shortened or given longer due dates to provide for her disability.  We currently are working on getting her own laptop or writing tool (like an Alphasmart machine) that she can use at her desk. 

 We believe that her dysgraphia is directly related to motor skills difficulties associated with Aspergers Syndrome and continue to research and work with her.  Although physical thearapy as well as the school district courses have shown improvement in many people with dysgraphia they still will probably need use of a computer for most of their lenghty writing projects. 

 Our doctor made a profound statement to me when I inquired about what options were out there to help fix this.  He said it is just like being blind….in most cases you can’t cure blindness but you can help them learn other techniques to function in society and have a full life. 

Socials skills difficulties are a symptom of Aspergers Syndrome. These are a few of the symptoms I have learned about in regards to social situations and social skills difficulties that you should address with a doctor.

1. Difficulty playing in a game situation such as not sharing, not following the rules, or taking turns.

2. Not knowing how to interact (wants to interact but doesn’t know what to do).

3. Will watch others but will not join in. Will stand in the distance and watch or be by themselves.

4. Inability to start up a conversation. Not knowing what to say.

5. Monopolizing a conversation. Not realizing they are not letting others speak.

6. Will not participate in activites that interest others. Only wants to do activities they enjoy.

7. Always has to control the situation. Playing or doing activities has to be done their certain way.

8. Limited ability to see or understand the emotions of others. They may not read the facial cues others give that show how they are feeling.

9. Exhibit behavior that may seem strange or out of place by peers. (Such as choosing games or activities of a younger age group)

10. Are not aware when others react negative to them joining into activities.

11. Will be unaware of inappropriate conversations or actions in a public.

I had mentioned in my last post about my doctor saying my daughter has high funcitoning Aspergers. This website www.aspergerssyndrom.net talks about that some more.

One of the largest problems with having a high functioning Aspergers child is people don’t always see a child with a disability, they think they are just acting out or undisciplined. I have even had this discussion with family members who felt it was a discipline issue. Even if discipline was the problem, Aspergers children work differently when it comes to discipline and techniques used on other kids do not always work or work the same with Aspergers children. We look back on all the years and all the different things we tried and now realize we either had absolutely no effect on her, or it went in the wrong direction from where we were trying to get.

It is extremely frustrating to have people misunderstand your child in this way. Since many Aspergers children have a maturity level under their actual age it makes things even worse. I often want to tell my child to grow up or act her age, but I realize she isn’t there mentally. She still loves to watch the young children cartoons, for example. She still can throw a tantrum (not throwing herself on the floor, but gets very frustrated and shuts off). Her ability to know what is proper and not proper in certain situations can still be at a childs level. This is also frustrating because some situations she is fine and handles herself perfectly, but once in awhile she doesn’t and you just don’t know when it will happen. This is where the high functioning Aspergers is in play, when she can function just fine, but then one day she doesn’t. I have often got the “look” from people. Even people I know and family members who know she has a disability. It is the “control your child”, or “what kind of parent are you” or “she has no dicipline” look. If they could only spend one day in my shoes to understand there is a difference with these children. They literally are wired different and have to be dealt with different. Just like when you come home with a new baby from the hospital “without an instruction manual” and have to figure it out…….this is the same. There is no instruction manual because they are all different and you have to find what works and fits for them.

I am so thankful she is high functioning Aspergers because she can lead a fairly normal life. She can learn the social skills and abilities to function in the world. It just takes time. I love that her doctor made the comment that “someday people may actually look at Aspergers as an positive attribute when interviewing for a career”. He made this comment after talking about several scientists that were thought to have been Aspergers. There are some good attributes that many Aspergers children display that could potentially be sought after in certain fields such as science. Since my daughter is a science freak and loves math, our doctor feels she could really excell in school and a career.

My daughters doctor has often referred to her as High Functioning Aspergers. He explains that being a spectrum disorder Aspergers children display different traits within the Aspergers diagnosis. She is high functioning because she may appear perfectly “normal” as they would say and then other times display the quirks of Aspergers. Many Aspergers children he sees show it all the time and are very obvious Aspergers. He was facinated by my daughter because Aspergers in girls is just now becoming more accepted and understood in his field. Having her be high functioning Aspergers made it more facinating to him. I have had many people comment on my daughter that she doesn’t appear to be different, but if they are around her long enough they will see displays of Aspergers in some way. I usually get this with the teachers. It may take a few days or even weeks before they see something out of the normal.

I always have a million questions about things I have researched and heard when we visit our doctor. He loves to sit with us and discuss everything (medications, teaching techniques, new medical findings,etc.) He is extremely knowledgable about Aspergers and other disabilities but I realize that there is so much that still isn’t known about Autism and Aspergers even today.

Not long after my daughter was diagnosed with Aspergers Syndrome I had started researching articles and books. I had found several books that looked good. One of the sites had a conferece in my area for one of the authors, Tony Atwood. After researching him I found out he was a leading researcher of Aspergers Syndrome from Australia. The conference was for teachers, medical professionals, and parents. I paid the money and attended the all day conference. It was well worth it. His discussion about how special these children are made me so much more comfortable dealing with these issues. He explained that they don’t see/do things wrong, just different.

I loved his analagy of the 100 piece puzzle. It has helped me explain Aspergers to so many people. He said to imagine a 100 piece puzzle. People with Aspergers have 80 or more pieces of that puzzle. Relatives will have simular traits to Aspergers and might only have 40, or 60, or 20 pieces of that puzzle and aren’t Aspergers, even though they might have a trait of Aspergers. It is only when they have 80 or more pieces and display a large amount of Aspergers traits are they truely Aspergers. Nice and easy! I left the conference feeling challenged, but eager to work with my daughter even more.

Aspergers children are brilliant and usually have special areas they excell in. My daughter is math and science. The book I read by Tony Atwood was called “Girls and Aspergers” which was a huge help to understand it better. Girls display Aspergers different then boys. Boys can be more outward and agressive while girls are inward and awkward. Social skills is the biggest display for both as they have difficulty reading social and facial cues given by others. I highly suggest reading one of Tony Atwoods books because he has many out there to deal with different situations. Check out his website at www.tonyatwood.com