Seeking Moms Who Know About Asperger's Syndrome

Updated on August 23, 2006
L.G. asks from Madison Heights, MI
35 answers

Need someone to explain to me what this is in simple terms. I was just told that my son (8years old) most likely has this and I am having a real hard time figuring out exactly what it is. Need help on how to handle a son with this illness. What needs to be done at home? School? On top of it all he has a potential sleep problem not associated with this.

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K.A.

answers from Detroit on

Dear L.,

My nephew has something like this right now. For overviews you can read all about it by going into WebMD.com I use it all the time. It's a very good reference for everyone.

Good Luck.

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J.E.

answers from Toledo on

I have a friend who also has a son with Asperger's. It took her 2 years to get him diagnosed! Here is an online support group you may find helpful. http://www.udel.edu/bkirby/asperger/

Best wishes!!!

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L.

answers from Detroit on

I didn't know anything about Asperger's Syndrome, so I thought I would look it up too. I really like using webmd.com. I thought this was helpful, but it may be too basic for what you are looking for...

http://www.webmd.com/hw/mental_health/zq1009.asp

Within that site they reference OASIS (Online Asperger Syndrome Information and Support) at http://www.udel.edu/bkirby/asperger/

Good luck hope this helps....

L.

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A.

answers from Detroit on

Hi. I am a high-school special ed. teacher, with some experience teaching students with Asperger's Syndrome. First of all, it is not an illness. Your child is not sick. Secondly, early detection helps you and your child learn to live with the disorder. It is categorized as a pervasive developmental disorder, which sounds scarry, and it is actually a form of autism -- high-functioning autism. This means that your child will be able to get along in society. Usually, Asperger's presents with similar characteristics as Autism, like inability to feel compassion or to empathize with others. This trait is the most difficult to handle for those around your child. The best thing for you to do is recognize that it is nothing you have done as a parent. When he has tantrums, the best thing to do is back off or restrain him until it is over. Let him have his space. He really does need it. His senses may be hyper. He may get extremely irritated by certain sounds or textures. This is real for him.

Never directly address a problem behavior with him. Instead of saying, "You shouldn't play with matches," say "No one is allowed to play with matches." This semantic trick can help defuse potential tantrums. There are many books out there on the syndrome and books written by parents as well. Check out your local book store or Amazon.

I have a friend whose son has Asperger's and he is now a student at Univ. of Michigan. He will always be different but he is a productive citizen. I've always felt that kids with Asperger's and Autism are a step ahead of evolutionarily in some ways.

One of my students who has Asperger's graduated this past June. He did better in alternative schooling (late high school) and in emotionally impaired classrooms (early high school). But as a senior, he had grown and changed so much that you would never know that he was diagnosed with Asperger's at all. You would think he was a bit eccentric. Our school social worker has known him since 6th grade and worked with him through much of his social conflicts. He remarked at how changed he was. I say this to warn you that there will be many tough times, but in the end your diligence and consistency will pay off.

For sleep problems with my kids, I use the book "Healthy Sleep Habit, Happy Child" by Weisbluth. It's awesome, but his sleep issues could be related to the disorder. Ask your doctor.

As for school, many students with Asperger's can stay in the regular classroom, with special education support and social work time. Your son should have an IEP (Individual Education Plan) done. This will ensure that he receives special services at a public school, and the team (of which you are member) will determine what those services should be. I'm not sure where you live, but there is a school in Ann Arbor, called Ann Arbor Academy. It has an amazing staff and several Asperger's students. It is geared toward students who learn differently. Your son would get what he needs there for sure. Their website is www.annarboracademy.org.

I hope this helps. Be patient and read up on the Individual with Disabilities Education Act and Asperger's Syndrome. Your other kids are bound to learn so much from him as well.

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N.W.

answers from Detroit on

L.,

I actually just read an article on this...I think it was in Cookie magazine I'll check tonight and will email it to you if I find it. From what I remember the illness is a derivative of autism-- but allows people to be much higher funcationing with some different or what we might consider odd personality traits. From the article I read-- it is often misdiagnosed in small children. I would recommend getting a second opinion.

-N.

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D.G.

answers from Cincinnati on

Hi L., from experience you should get another opinion and you should get the sleep problem checked and fixed many disorders do get better or resolve after the sleep problem is under control. i have seen many kids as well as adults behaviour change once their sleep problems are fixed. Good luck and God Bless.

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H.C.

answers from Canton on

I would suggest you check out this attached site. We have had a couple of children in our school with Asperger's. I also would direct you to the SERRC Center. A book I could recommend is "Asperrger's Syndrome: A Guide for Parents and Professionals," by Tony Attwood 1998. Hope this helps. H.

http://www.autism-society.org/site/PageServer?pagename=As...

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R.

answers from Lansing on

I wish I knew more about it to share with you, but I do know of some great resources. If you search for it online there are lots of links. I'd try www.aspergers.com since that entire site is dedicated to answering questions like yours. You might also search it on www.webmd.com. Don't forget...we have to be responsible for our own care as well and not just take the first doctor's word...don't be afraid to get a second opinion. Especially if you find in your research that things don't add up. Good luck...we'll keep you in our prayers.

Topic Overview

What is Aspergers syndrome?
Aspergers syndrome is a developmental disorder in which people have difficulties understanding how to interact socially.

People with Asperger's syndrome have some traits of autism, especially weak social skills and a preference for sameness and routine. However, unlike those with autism, children with Asperger's syndrome usually start to talk around 2 years of age (the age at which speech normally develops). They have normal to above-normal intelligence.

Both conditions belong to the group of disorders called pervasive developmental disorders. A recent study of a U.S. community of 76,000 found as many as 3 out of every 1,000 children were affected by Asperger's syndrome. 1

What causes Aspergers syndrome?
The exact cause of Asperger's syndrome is not known. Asperger's syndrome tends to run in families, suggesting a genetic link, although scientists have not discovered a distinct genetic marker. Many experts believe that environmental factors may also play a part in causing Asperger's, although scientists have studied several factors, including vaccines, and have yet to identify a cause.

What are the symptoms?
Children with Asperger's typically develop a good to excellent vocabulary, although they usually lack the social instincts and practical skills needed when relating to others. They may not recognize verbal and nonverbal cues or understand social norms, such as taking turns talking or grasping the concept of personal space. They may have difficulties with accent, tone, and pitch, making their speech sometimes odd or difficult to understand. They may have difficulty expressing their own feelings and perceiving others' feelings. Children with Asperger's typically make efforts to establish friendships, but they may have difficulty making friends because of their social awkwardness.

Children with Asperger's syndrome may have limited and very focused interests. They are often most comfortable with fixed routines and dislike change. They may lack coordination, exhibit unusual facial expressions, body postures, and gestures, and be somewhat clumsy.

Children with Asperger's syndrome will have some of the traits typical of the syndrome. However, each child with Asperger's presents a different picture; some will have less pronounced traits, while others' are more noticeable. Each child will have individual interests, likes, and dislikes.

How is Aspergers syndrome diagnosed?
Asperger's syndrome is usually not diagnosed until a child is at least 3 years old, when social problems become apparent, although it may be diagnosed earlier. A diagnosis is based on a careful history of the childs development, psychological and psychiatric assessments, communication tests, and the parents and clinicians shared observations.

Asperger's syndrome is diagnosed when specific criteria, published in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR), are met.

How is it treated?
Treatment for Asperger's should be tailored to meet individual needs. Communication and social skills training is usually recommended. Behavior management, in which good behavior is rewarded, can help change problem behaviors, such as interrupting and dominating conversations.

Medications for Asperger's syndrome are generally avoided, especially in young children, but may be recommended for specific symptoms, such as depression.

Federal law requires public schools to provide appropriate educational services for people with Asperger's between the ages of 3 and 21. Contact your local school district to find out which services are available for your child.

How are families affected?
Parents of children with Asperger's syndrome face many challenges raising children with special needs. They may have difficulty finding health professionals who are knowledgeable about this uncommon condition. Also, overtaxed teachers may not be able to offer the kind of help parents know their children need at school.

Many children with Asperger's syndrome also have other coexisting conditions, including attention deficit hyperactivity disorder (ADHD), anxiety disorder, obsessive-compulsive disorder (OCD), social anxiety disorder, or depression. These conditions also complicate a parent's job. Many parents find solace and build acceptance with help from support groups, counseling, and a network of friends, family, and community.

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R.K.

answers from Detroit on

My 20 year old daughter is dating a man with a daughter "Erica" that has Asperger's Syndrome. We looked it up on the internet and got some helpful information. You have to talk to them a certain way sometimes for them to understand, so this website was very helpful. This little girls mom passed away and left behind a pamphlet in the home, so we all read this too. Erica has to follow a routine schedule and is extremely bright. She excels in science, math and music! She plays perfectly with children of all ages, we just adore her! Check this website out...it was helpful.
www.udel.edu/bkirby/asperger

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A.M.

answers from Detroit on

I'm not a mom with a child who has aspergers syndrome but i know a little about it as I have worked with children who have it. It is a social disorder more than a developmental disorder. There are plenty of groups that can give you information and plenty on the internet(I'm sure you know that. )

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Y.N.

answers from Detroit on

Lilian,
I don't think I can explain Asperger's Syndrome but there is an author that writes books that illustrates the condition and similar conditions. She is a very successful women with autism. Her name is Temple Grandin. Check her books out on Amazon.com.
Y.

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L.F.

answers from Cleveland on

My sister in law's brother has this. He is an adult now. He is fully functioning - lives on his own, works as a local delivery driver, but his social development is like a 12 year old's. Here is an example- he wants friends very badly, but doesn't understand that the gay men at the park want more from him than just firendship. (He is straight, but doesn't undertsand that not everyone else is). My understanding is that people with aspergers don't understand social cues at all. I worked with a guy in his 20's with asbergers. He was a computer genius, but would follow around any woman wearing a long skirt. He was sweet, but needed some protection. Does that help?

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P.S.

answers from Cincinnati on

Is this the condition where they blurt out either off color or poorly timed responses to things? Not exactly Turret's when there is a lot of cussing involved, but just in this case poor timing and off topic remarks? P.

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J.

answers from Saginaw on

L.,

Don't be afraid of this diagnosis. Which son has this (the age)? I've been through all this and my son is turning 10 in 2 weeks. The sleep problem is probably associated with this. Aspergers is in the Autism Spectrum and you need the school to test him and do an IEP (Individual Education Plan) for special services. Another place to go is Pine Rest (former Child Guidance Center), they should be able to do a Psychological Profile for you and give you some guidance and counseling. At your school level, contact the principal as soon as possible to request an Autism diagnosis so he can start the services. He probably will need to start a sensory diet (occupational therapy program) and some special help within the school for his in-class work. If you would like to speak with me, let me know and I can give you a call with contacts to help you get started. The sooner you get the help at school level, the sooner your soon will succeed at everything he does! These are exceptionally great kids!

J.

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C.J.

answers from Detroit on

I had never heard of Asperger's Syndrome until 2 weeks ago when a friend of mine told me she is getting her son tested for it. I came across this web site:
www.autism-society.org/site/PageServer?pagename=Aspergers.
It may be helpful to you and yours.

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K.

answers from Cleveland on

Hi L.,

My name is K. and my almost 7 year old son does not technically have Asperger's but his symptoms from ages 4 - 6 led us to believe that he did have it. I have thoroughly researched this and have counseled quite a few parents. I also wrote a grant for an autism awareness group while in graduate school.

Please feel free to email me and we can set up a good time to talk about this. I run a couple of small businesses and so I am out quite a bit.

K.
[email protected]____.com

P.S. We went through intensive therapy with our son for 2 years and he has mainstreamed beautifully into kindergarten last year. Our son is probably highly gifted and shows signs of being a real genius. Most importantly, he is making great strides in his socialization.

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M.

answers from Detroit on

Hi L.,

I work at an elementary school in Ypsilanti and we had two children (brothers) both with Aspergers Syndrome. This is a type of autism, and both children were very functional in school in a normal classroom setting. I would like to get some info from their mom, who took classes on Asp. Syn., so that I can share accurate info.with you. Please don't worry, these were bright children who just had a different way of learning. I will contact you as soon as I hear from her.

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T.

answers from Saginaw on

http://en.wikipedia.org/wiki/Asperger_syndrome

L.:

I do not have personal knowledge, but above is a link with a lay explanation. The internet should be a good source of information and potential resources.

Best of luck,
T.

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L.M.

answers from Columbus on

L.,

I am not sure if this helps or not but there is a charter school in Columbu on 161 called Summit Academy. www.summitacademies.com It is especially for children with Aspergers and ADHD. They may be able to help you with gaining a better understanding and an alternative for school.

L.

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S.R.

answers from Detroit on

L.,

My name is S. and I have a sister with Autism. The best place to look for information and support is the Autism Society. My mom used them when my sister and I were younger and they were a great help. The simplist way to describe autism/aspergers is a communication disorder. My sister is currently 31 years old and has the mentality of a 3 to 5 year old. I have also personally worked with people with Autism, besides my sister for quite a few years. If there is anything I can do, or if you have questions, please feel free to contact me.
S. Read

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L.J.

answers from Cincinnati on

Asperger's is a term given to students who are seen by a doctor and given a series of tests. Difficulties may range from speech and language, social skills, sensory problems, and difficulty with change or transition. It is part of the autism spectrum. Autism has wide ranges and children with Asperger's are typically higher functioning. Is the school aware of his diagnosis? If not, please meet with the school psychologist and intervention teacher and share what the doctors have said. Once the school is aware of his diagnosis, they will need to develop an individualized educational plan for him. I wouln't consider it an illness. He can be very successful in life. I have worked with many autistic students as well as students with Asperger's syndrome. I was on my way out when I saw your post. I will come back and suggest some things you could try. It might be helpful if you could share what difficulties you see your son having. If you don't mind sharing, what school district are you in?

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K.P.

answers from Canton on

Hi L.,
I understand how overwhelmed you must feel right now. My nephew now turning 11 was diagnosed at a young age. My sister has done alot of research, seen specialists, changed diet, and has been in close communication with the school where her son attends. I won't say it's been easy. It's been a process with many successes along the way. Diet has created the biggest change for him. Christopher had even had sleep problems which has been dealt with with success. My sister would be a great source of information for you. You didn't say which son was diagnosed. If you forward an email address to me, I will pass it on to her. She lives in Virginia and I live in Ohio so email is our best communication. Good luck, I know with persverance, you will be able to help your son get along with this. It's great to have one stay at home parent too!
Sincerely, K.

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S.

answers from Columbus on

L., I found this article. I thought it described it fairly well. I hope it helps.

What Is Asperger Syndrome?
By Barbara L. Kirby
Founder of the OASIS Web site (www.aspergersyndrome.org)
Co-author of THE OASIS GUIDE TO ASPERGER SYNDROME (Crown, 2001, Revised 2005)
Asperger Syndrome or (Asperger's Disorder) is a neurobiological disorder which described a pattern of behaviors in several young boys who had normal intelligence and language development, but who also exhibited autistic-like behaviors and marked deficiencies in social and communication skills.
Individuals with AS can exhibit a variety of characteristics and the disorder can range from mild to severe. Persons with AS show marked deficiencies in social skills, have difficulties with transitions or changes and prefer sameness. They often have obsessive routines and may be preoccupied with a particular subject of interest. They have a great deal of difficulty reading nonverbal cues (body language) and very often the individual with AS has difficulty determining proper body space. Often overly sensitive to sounds, tastes, smells, and sights, the person with AS may prefer soft clothing, certain foods, and be bothered by sounds or lights no one else seems to hear or see. It's important to remember that the person with AS perceives the world very differently. Therefore, many behaviors that seem odd or unusual are due to those neurological differences and not the result of intentional rudeness or bad behavior, and most certainly not the result of "improper parenting".

By definition, those with AS have a normal IQ and many individuals (although not all), exhibit exceptional skill or talent in a specific area. Because of their high degree of functionality and their naivet, those with AS are often viewed as eccentric or odd and can easily become victims of teasing and bullying. While language development seems, on the surface, normal, individuals with AS often have deficits in pragmatics and prosody. Vocabularies may be extraordinarily rich and some children sound like "little professors." However, persons with AS can be extremely literal and have difficulty using language in a social context.

At this time there is a great deal of debate as to exactly where AS fits. It is presently described as an autism spectrum disorder. Some professionals feel that AS is the same as High Functioning Autism, while others feel that it is better described as a Nonverbal Learning Disability. AS shares many of the characteristics of PDD-NOS (Pervasive Developmental Disorder; Not otherwise specified), HFA, and NLD and because it was virtually unknown until a few years ago, many individuals either received an incorrect diagnosis or remained undiagnosed. For example, it is not at all uncommon for a child who was initially diagnosed with ADD or ADHD be re-diagnosed with AS. In addition, some individuals who were originally diagnosed with HFA or PDD-NOS are now being given the AS diagnosis and many individuals have a dual diagnosis of Asperger Syndrome and High Functioning Autism.

Here's a book that should be available at local bookstores:
The OASIS Guide to Asperger Syndrome: Completely Revised and Updated
Advice, Support, Insight, and Inspiration
by Patricia Romanowski Bashe and Barbara L. Kirby
Forewords by Simon Baron-Cohen, Ph.D. and Tony Attwood, Ph.D.

A comment from someone who read the book:
A godsend to the increasing number of families who have a child recently diagnosed with Asperger Syndrome (AS). They will get sympathetic and sound practical advice for the difficulties they are facing, whether it is in coming to terms with the diagnosis or in choosing the right kind of education and therapy. Two heroic mothers, Kirby and Bashe, have made it their business to find out what AS is really like and what it entails in practice. They show by example that it is possible to meet the challenges of a child with unusual skills as well as problems. Above all, they show the way in which AS can enrich our lives."

S.

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M.R.

answers from Toledo on

Hi L..

Actually I just spent the day with a Mom whose son has this. She was telling me a little about it, BUT I am not going to attempt to answer it. She did just join this site though, so I will give her a heads up and have her get in touch with you.

Blessings!!!
M.

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S.

answers from Cincinnati on

Dear L.,
How traumatic that you are dealing with a new diagnosis for your son. I know of many people who have had success improving many health challenges with nutrition. If you would like to explore this possibility, please feel free to contact me.
S.

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G.T.

answers from Toledo on

I think (not sure tho) some of the girls on my board have some experience with this..

www.mommiesnbabies.com

You have to register then post an intro and then C&P the newbie questions into a new post in the newbie room.

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C.P.

answers from Cincinnati on

HI, I don't know much about Asbergers, but my MIL does. She even wrote her thesis on the subject. She is very kind, and friendly and would be happy to help you. Let her know that C. gave you her email address if you do decide to email her.
Her email is [email protected]____.com
The best of luck to you and your family.
C.

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L.

answers from Toledo on

L., i have a son with this too. New Horzons .org has some good rescourse. Also if you goolge Aspergers it will come up with all kinds of sights. You also need to get him evaluated by a pediactic psycologist not the school. they just want an excuse to drug him up and that is not the solution. I also have had some succes giving my son 3-6-9 omga oils, the mane of the company is KAL i get it at the health food store. It take dilegence to research it and work with your son on social skills. My son is very shy and social situations are very stressfull for him but I keep at it and talk to him alot about it and how to overcome the challenges of this ayndrom. It is high functioning autism, but varies in intensity. A good diagnosis is esential, so that's the first plae to start. Don't let this define who he is and keep a cherry attitude it will help him not to feel so over come by it. I live in the Defiance area so if your close may be we can talk inperson sometime. I can try to get you alist of the things I ahve read on this. Good Luck L. K

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K.R.

answers from Detroit on

http://www.nlm.nih.gov/medlineplus/ency/article/001549.htm

Try this site. Copy and paste it into your URL address bar or browser. I glanced at it really quick and I thought it was rather informative in a lamen's-terms sort of way.

Good Luck and God bless,
K.

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M.

answers from Saginaw on

L.,
I have a daughter with aspbergers. Dont loose hope there is a lot you can do. My daughter is now 7 and is very functional among piers her own age. One thing you need to do is check with your school system it does not matter if they are as young as one you need to get an evaluation in Michigan they re called IEP's. That can tap into services such as speech therapy and other things. It does not matter what your income is. There are many other thearapys you can do at home that help (touch and play helped my daughter) Things like picture cues can help too. If you go on line and type in Aspergers there are many help ful things. I want to give you more info and you are welcome to email any time. [email protected]____.com. I have a new born baby on my lap so if this was a little mis typed thats why I will touch base and get you more info hang in there........ M.

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B.W.

answers from Detroit on

http://www.remedyfind.com/treatments/81/1447/

I have found that this type of treatment is very safe and comforting to the child involved.
At the very least this type of treatment would not hurt your son. I have seen it work wonders with many children. I use it on my own 3 children.

If you have any questions you may contact me.

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A.W.

answers from Detroit on

I am a teacher and one of my all time favorite students had Asperger's. His name was Zach and he was extremely bright. He just needed to be taught how to handle social situations. His parents had taught him to smile and say hello to his teacher everyday when he entered the class and smile and say good-bye the same way everyday. It was so sweet and endearing as Zach was in all situations.

Be careful when reading all of the internet sites to remember that every child with Asperger's is different and your child is not a statistic. Work with his doctors, teachers etc... to help him adjust and then just love him for who he is and the talents God has blessed him with.

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S.P.

answers from Joplin on

L.,
I bet your head is spinning now with all of this information and advice. Don't let it overwhelm you. Step back... take a deep breath, and spend a little time praying about it. He will tell you what to do next. Just trust.
I also have a son with Aspergers. He wasn't diagnosed until he was 10 and is now 15. We have always known that "something wasn't quite right", but was never able to find out exactly what. Finally, our school counselor suggested maybe we do a little research on it. Finally! A name to put with the idiocyncracies! Long story short, a lot of doctors and "treatments" later, we have overcome a lot of the obstacles.
For instance, he used to be very sound sensitive. He could even hear the squeak of a cotton ball! Yes, it has a sound. How woulda thought? Squeaky sneakers on a tile floor, loud noises and especially the school bell ringing would send him reeling. So, we put it in his IEP that he was allowed to move to his next class or activity early so he avoided the noise. That is an example of the adaptations that you may have to make. Usually simple, but oh so helpful. By all means, get him into see an occupational/speech therapist. They can really help with the sensitivity issues.
Lastly, these kids are such a joy to be around! They are so incredibly smart! Very often in the gifted range. They have an ability to figure things out in a way that will amaze you. Give him the opportunity to take things apart and learn that way. My son loves to take apart old household appliances, old computers and is now into lawn mower engines. When people learned that he loved to disassemble appliances, they would bring over their old stuff. Many days, we'd come home and find a broken vcr on our doorstep! :) Introduce him to www.howstuffworks.com Great site for these kids!
I have a workbook that I would like to send you if you give me your address. It's called Asperger's... What Does it Mean to Me? It is a workbook explaining self awareness and life lessons to the child or youth with High Functioning Autism or Aspergers. by Catherine Faherty. It was very helpful to my son when he was first diagnosed. I would love to give it to you.
S.

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L.

answers from Grand Rapids on

L.

My understanding of Asperger's is that it is a highly functioning type of Autism. Your peditratian should recommend a specialist to work with you and if they don't want to insist on it. I met a woman recently who's son has the syndrome and he attends a normal middle school and gets good grades, he just needs a little extra help in some areas. It's also genetic so someone in your family or your husband's has it and you may not even realize.

L.

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