Aspergers Syndrome

My husband sent me an email this week.  I guess he had just been thinking recently about what it must be like to be our daughter.  I could not have said it better and was truly touched by his observation of how Aspergers really effects her.   Based on his observations and unconditional understanding of her, this was the poem he wrote:

“There is a hurricane that rages constantly in my head.It never ends.The noise is like the rush of a freight locomotive as it clacks and groans along the tracks.Although I try my best to reach into the storm and pull out the one thing I need right now, it is often a fight in futility and the hurricane wins.I have practiced and practiced to catch the odd thought or important fact but it seems as soon as I catch it the rush of the wind fights to tear it from my grasp.The battle is constant and it strains me to not succumb to the intense pressure and power of the wind in my head.The meds have helped slow the storm.  At times I can concentrate fully on that one task or another I have pulled from the storm.More than one task in each of my mental hands keeps me off balance and makes me slow to respond to outside stimulus.I have managed to pull an item or two from the grasps of the monster, which are mine and I am reluctant to let go, even if they seem juvenile or socially incorrect for my age.I wish people could understand me but I have trouble communicating through the sound in my head.I get side tracked and confused where I am.The compass in my head is blown to and fro by the storm.And I lose my train of thought which I struggle to regain.I wish it would go away and then I could be normal like everyone else.Sarcasm escapes me.Loud noises cause me great consternation.Light sometimes bothers me.Things need to be just so.Change is always hard.Nobody understands me!”

This is the world my daughter lives in every day.  She has a form of Autism know as Asperger’s Syndrome.  It has been so hard to see her try so hard to do some things and not be able to quite get there.  She loves school which is great, but if you were to ask her who her best friend is she would say her sister.  Not because she is her best friend, but she is the only person she feels a friendship with.  She would rather be in a class all to herself every day then spend it in a classroom full of kids, the din of a classroom just adds to the roar of the storm in her head.  Alone time is all she craves.  My heart aches for her especially when people misjudge her because her cover looks like she is 12, but at times in social situations she acts 6. She is a brilliant student, although she often forgets to turn in her work.  All honors classes for a grade level higher then hers and usually the tops of her class.  Orchestra, a violinist, not the best, but she can at least pull that moment from the storm.  I used to struggle with her from the day she started school to tell her NOT to bring home rocks or acorns in her book bag.  Sometimes it was pounds of rocks, who knows where they came from?  When I finally thought we had it under control, I realized she had switched to frogs in her pockets, not rocks.  Some made it home alive, a couple did not.   No amount of conversation and love with her has changed this one thing she had grasped and won’t let go of.  It is hers.  Now, I let her keep the rocks in a pile in the back yard.  They are hers. Nobody wants to hear the “excuse” that she has a disability because they can not SEE it.  I worry and pray for her constant.  I wish I could fix it.  I wish I could tell her everything is OK.  I wish…  Take the time to learn that not everyone is what they seem.  Love people for who they are.  Understand that some are different through no fault of their own. 

There are many researchers of Aspergers Syndrome who have brought this condition to where it is today.  They also continue to research as well as educate the public about this Autism Spectrum Disorder.  There is plenty of books, magazine articles, websites, and other forms of information about these researchers.  Here is a few of the researchers I have found:

Christopher Gillberg is a professor of Child and Adolescent Psychiatry at Gothenburg University in Gothenburg, Sweden.   He is known for research in Autism in children, Aspergers, and also ADHD and anorexia.

Lorna Wing is an English psychiatrist and physician.  She along with other parents founded the National Autistic Society in the UK in 1962 after becoming involved in researching developmental disorders and autism spectrum disorders due to her own child having autism. 

Tony Attwood is an English psychologist who lives in Australia.   He has a clinical practice at his diagnostic treatment clinic in Brisbane for Asperger’s Syndrome in children and adults.  He has also written many books about Aspergers Syndrome.

Simon Baron-Cohen is a professor of developmental psychopathology in the departments of psychiatry and experimental psychology.  He is director of the Autism Research Centre at the University of Cambridge in the UK. 

Uta Frith works at the Institute of Cognitive Neuroscience at University College London as a leading developmental psychologist.  She has several books as well as published many papers on autism and dyslexia.   

Since Aspergers is still being researched and explored there are several research projects that need participants.  Here are several that I have found through internet research that may still be looking for participation.  Contact them for more information about their project.  Check my blog for more research projects as I find them:

1.  New York University: Steinhardt School of Education Department of Applied Psychology is looking for parents of children ages 5-16 years old who have been identified as having Aspergers Syndrome.  This is part of a doctoral dissertation for Jeanne Angus.  There is an online survey about parenting experiences.  Link: : www.jeanneangus.info  (password: Asperger) or try calling them at (646) 698-3041 or email at  j.angus@nyu.edu

2.  Columbia University Programs in Occupational Therapy are conduting an online survey of parents’ perceptions of their understanding Aspergers, sibling relationships and need for support services.  This research needs siblings of children diagnosed with Aspergers syndrome.  It asks questions relating to siblings’ adjustment and support and their relationship with their AS sibling.  They are seeking parents who have an AS child who has atleast one sibling both over the age of 6.  Link:   http://www.columbia.edu/~ch2277/ or emailing  eir12@columbia.edu or call at (212) 342-2743

3.  Hofstra University, Hempstead, New York Clinical/School Psychology Ph.D. Program  is looking for parents of children diagnosed with Autism, Asperger’s Syndrome, or Pervasive Developmental Disorder (PDD).  This is an online questionaire examining parental experences and opinions of educational placments for children with these disorders.   Link:  www.autismspectrumsurvey.org or email Dawn Middleton at dawnmiddleton@yahoo.com

4.  The UC Davis M.I.N.D. Institute’s clinical research program is looking for children from birth to adulthood to participate in a study.  They are seeking participants with neurodevelopmental disorders, developmental delays, or typical development.  Some financial compensation is offered for some studies.   University of Cambridge - UK Autism Research Centre is looking for adults or children diagnosed with Aspergers Syndrome to be part of a new genes project along with their siblings.  This involves collecting a DNA sample and a questionaire from individuals with Aspergers Syndrome and their bological siblings.  This research may enable them to identify specific genes with AS, possibly lead to earlier diagosis and better understanding the condition.  Contact  Meridith Brandt at (916) 703-0320

Does Tom Hanks have Aspergers?

I have not found anywhere to confirm or deny that Tom Hanks has Aspergers Syndrome.  I have noticed many requests for information on Tom Hanks and Aspergers though.

What I can tell you is that Tom Hanks has been included on the list of people who are suspected as possibly having Aspergers Syndrome at  http://www.disabled-world.com/artman/publish/article_2086.shtml.  This is a very interesting list of people who are speculated as having Aspergers based on the research and opinions of people who study Aspergers Syndrome.

Interesting to note though is Tom Hanks is related to Abraham Lincoln who is also on this list of suspected people with Aspergers.  This suggests possible genetic ties that might include the Aspergers traits if they both indeed have/had Aspergers.

Another interesting note I found about Tom Hanks is that his character “Forest Gump” portrays a person with many Aspergers traits.  Hummmmm……makes you wonder! 

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?

Controlling everything is often a trait found in people with Aspergers Syndrome.

 One of the biggest areas this is seen is with social situations.  Playing with others isn’t always a pretty sight because often they have already figured out how the situation should play out and want to control everything to make sure it plays out that way. 

I don’t think it is out of selfishness or greed that they do this.  Having Aspergers and the social skills difficiencies associated with it causes them to have a lack of understanding of others wants and needs.  They may be completley unaware they are controlling a situation or even that they have upset someone else. 

Trying to stop or change the process before it has played out often results in tantrums, frustration, anger and crying.   They might actually fight you to finish something.  We have seen this with our daughter as she is trying to prove a point about something we already know.  She still “has” to finish her thought process wether we want to hear it or not.  If something is out of place it has to be fixed “now” because she will only focus on that until it is.  Playing games with others becomes a fight with her because something isn’t done to the letter of the law.  She will argue about subjects that can have several solutions but she has one picked out and that is how it is. 

Continue working with social stories and explaining social situations with Aspergers children to help them understand where they are being controlling.  Help them understand how others are feeling by asking how they would feel in those situations.  Often it is easier to just let them have their moment.  Just like with us when our daughter is dead set on finishing her thought wether we want to hear it or not.  We have learned to just let her finish.  We pick our battles and some just are not worth fighting because there will be other necessary battles.

Getting any child to do homework is a chore.  You just spent all day long at school doing class work who wants to come home and jump into doing more of it?

 When working with an Aspergers child and trying to get them to tackle their homework be flexible and patient.  Realize they see things from a different point of view and trying to reason with them does not always work.  Often they need some wind down time to get their mind cleared of what they have experienced all day at school and to just get into their comfort zone for awhile.   The stress of the day needs to be washed away.

Many people with Aspergers have a comfort zone that helps them to focus and relax.  For some it might be reading, watching television, computer games, playing outside, painting or more.  Allowing them some time in their comfort zone will help them refresh and be more willing to sit down renewed and ready to do their homework.  When they are feeling stressed and wound up they will not focus or be willing to committ 100% to the task at hand.  Often they will shut down completely even to the point of throwing a tantrum, crying, anger, and just an overall display of frustration. 

If you find that there is an excessive amount of homework you are well within your rights as a parent to discuss the situation with teachers and school officials.  Often they can reduce the amount of work or extend the timeframe for assignments.  

My daughter definetly needs wind down time after school.  Even with a half an hour of playtime outside she is more focused and refreshed.  We have found that trying to get her involved in any type of homework including subjects she loves turns into a battle if she is still in the whirlwind of a day she has already had.  We realize it is stressful just to go through the daily process when dealing with Aspergers Syndrome.  Helping her find her comfort zone and relaxing should be our main goal once she returns home from school.  We have discussed with her teachers other options for homework and have worked out systems that allow her extra time when necessary.  Teachers will also notify me by email or phone of upcoming assignments and their expectations so we can be prepared and help where needed.  We have found all the teachers to be accommodating when we show them we are involved and reasonable concern for specific assignments. 

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. 

An Idividualized Education Plan (I.E.P.)  is something designed to meet the unique needs and educational accomodations for one child.  The I.E.P. is mandated by the Individuals with Disabilities Education Act (I.D.E.A.).

In the United States under I.D.E.A. public schools are required to develope an I.E.P. for any student with a disability who meet state and federal guidlines for special education.  An I.E.P. is a written document describing the accommodations and programs that will be used to assist the student with a disability in their education. 

Before an I.E.P. is discussed students should be evaluated in their overall curriculum and how thier disability affects their learning.   Each I.E.P. is tailored to a specific student and should help teachers and other school officials understand the disability and the overall effects it has on the students learning.  It should include annual goals, how to measure goals, reporting process to parents, any services such as special education or additional aides to be used, classroom accommodations, schedule of services provided, and modifications for classwork, projects or programs. 

An team will meet to discuss the I.E.P. and should include parent or guardian, a special education teacher, one or more of their current educational teachers, school representative (principal, councelor), and a district representable who is knowledgeable about the school resources and who can discuss the instructional implications of the evaluation results.  Parents should also consider contacting their doctors for written suggestions they also have to help with the childs disability to be discussed during the I.E.P. process.

Parents need to be involved as equal partners in the I.E.P. process and must stand firm to the accomodations you and your doctors feel necessary.  You have a right to ask questions and dispute anything and everything.  You may also request modifications to the I.E.P. at any time.

Our daughter has Aspergers Syndrome and A.D.H.D.   She has dysgraphia which is a handwriting difficiencty which can be associated with the motor skills difficulties with Aspergers Syndrome.  Her hand muscles will start hurting after extended writing.   Her writing is illegible most of the time.  When tested she could write legibly but not at the adequate rate for her age and grade level.  She has difficulty with spacial and sizing of letters.  She also has difficulty with spelling and slight dyslexia with letters like P, 9, D, B.  Her I.E.P. accommodations include using a computer for almost all of her school work.  She can write one or two words for worksheets, or doing math but for overall work with multiple sentances she will use the computer.  She also has an accommodation that includes getting copies of teachers notes instead of taking notes on her own.  We currently are working with the school to get her own writing tool device which could include a laptop or a device like an Alphasmart machine.  She attends a class for dysgraphia/dyslexia on a daily basis for about 15-20 minutes.  Her teachers also work with her on specific projects that may require extra work at home or additional time to complete the project.   

Tis the season of brightly lit and flashing lights.  Homes and yards are decorated with holiday decor.  Christmas trees adorn almost every building we enter and holiday music fills the air.  Everywhere we go we are met with crowds of people scurrying around to find that perfect gift.  Lines are longer, stores are full of holiday merchandise, and families are pulling out their favorite holiday recipes.  This is why so many people love this season!

Unfortunetly for people with sensory sensativity due to Aspergers this can be a frustrating and stressful time of year.  Think about the bright and flickering lights as a constant blinding annoyance.  Think about all the noise with crowds of people and holiday music being loudly played everywhere you go.  Even in your own home your surroundings have changed with holiday decor and a big huge tree that if real smells like a pine forest.  You now smell and taste different foods you normally are not eating the rest of the year.  Chances are you are eating more candy and cookies then normal too.  There are parties going on all over the place causing your schedule to be different then normal.  Some get so excited about opening presents that they become obsessive and stressed about how long Christmas day will take to get here and those presents under the tree just stand as a reminder of what they are not able to do yet! 

It is important to be considerate of sensory sensativities especially at the holidays since routines and atmosphere around those with Aspergers have changed.   Discuss the season with your child or relatives to help ease the stress of the holidays.  Try to stick to normal routines as much as possible.  Be aware especially in crowds and busy stores of how your Aspergers child is coping with all the comotion.  Simplify if necessary and help make it a joyous time for them as well by just being supportive of their particular needs.