Aspergers Syndrome

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

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. 

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

Whether it is your child with Aspergers or other children needing to be informed explaining Aspergers Syndrome can be confusing and complex for them.

The key is explaining it on a level they will understand. Books are one of the best tools because you can find them for any age level. I have two books I have purchased to help my daughter understand Aspergers Syndrome that I would recommend.

The first is “All Cats Have Aspergers Syndrome” by Kathy Hoopermann and is perfect for even very young children. This book discusses things you see cats do with similarities in children with Aspergers. Things like “loud sounds and sudden movements scare them”, or “even small things fascinate them”. This was a very fun book to read and the pictures are perfect for young children.

The second book is for children as well, but is based on a school aged boy talking about himself with Aspergers Syndrome. It is “Can I Tell You About Aspergers Syndrome?” by Jude Welton. We bought this book for her to do a book report on. It helped her as well as her teacher understand her condition better.

Here are some ways to explain Aspergers. It is named after the man Hans Asperger who worked with children. It isn’t an illness but is called a type of autism. This means their brains can do some things really well, but some things are harder to do. Both boys and girls can have Aspergers but might act differently. They will always have Aspergers if they are diagnosed, but can learn most things they need to know to live like everyone else.

Some highlights from “Can I Tell You About Aspergers Syndrome?” that can be used in helping explain Aspergers to children could be:

1. Most people naturally know a lot about what other people are feeling and thinking. They watch faces, the way a body moves, and things people do to see that. Aspergers makes it harder to do this naturally. They don’t understand just by watching someone. They can be taught to read

   these signs.

2. They can get confused if someone says something silly but doesn’t mean it that way. People with Aspergers will think what you are saying as what you mean.

3. They may not know when others are making fun of them or teasing them because it is a part of reading body language and how they are talking.

4. They may say things that are not nice or confusing but do not know they have done it that way.

5. It may be difficult for them to take turns and play nicely because they have difficulty with groups called “social situations”. This is also something most people do naturally, but Aspergers people sometimes have to be taught this also. Explain rules of games and help them take turns.

6. Sometimes they like and even need to play quietly by themselves. This can be comforting to them and make them feel better.

7. Sensory problems are when things like taste, touch, smell, and sound bother them. Not everything or everyone has these problems, but many things can really bother them. They may get upset or frustrated if these things are bothering them.

8. They like routines which means to try to do the same things the same way as much as possible.

9. If things need to change they should be told what will happen.

10. They sometimes can’t always control their movements and may be clumsy. This could be in things like catching a ball, learning a dance, or even walking and running a little differently.

11. They may not realize that others like things and will only talk about and want to do things they want to do.

12. They may have things they like so much that when they grow up they could do that as a job. Things like outer space, dinosaurs, computers, medicine.

13. Sometimes making choices between things can be hard and make them stressed.

     

One of the first things I noticed after my daughter was diagnosed with Aspergers was how alone and different I felt.  Even though I knew others had Aspergers I had never actually heard anyone speak of it or knew of anyone who had Aspergers.  Trying to go through daily experiences where I felt I was the only one in the whole world having these problems with my daughter was a nightmare!   During my research to learn more about Aspergers Syndrome I came across a Yahoo Group www.MomsOfAspergersGirls@yahoogroups.com which focuses on asking questions and relaying experiences to help eachother.  When I joined I had a million questions.  I now am able to read daily posts and respond to questions others ask as well as post questions and new information I find to this site.  What was the best part was to find that others are going through exactly the same things I am. 

We have discussed things from social skills problems, stories about social interactions, obsessions, medications, diagnosis, school and teacher difficulties, family interactions, explaining Aspergers to others, favorite activities, technology equipment and aides, websites, motor skills difficulties, peer conflicts, books & videos, doctors, eating and sleeping habits, new research and information, depression, multiple diagnosis,  and more. 

Most importantly we share our own personal feelings as parents with the struggles and pains we have experienced as we try to move forward day to day.  It is always easier to face something new, different and maybe even freightening when you have others walking hand in hand with you.  I have found that whenever I post a question there is always someone to reply even if just to say they understand and have been there.  It is nice to not be alone!

I have found several other Aspergers Support  Groups and chatrooms which look simular to the group I am a part of.  Check out these groups as well to find a support system that works for you.

http://groups.yahoo.com/group/autism_aspergers_chat

http://www.cafemom.com (sign up and then search in groups under Aspergers)

http://www.support4hope.com

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