My Child Diagnosed with Asperger's

My son has Asperger's Syndrome (He also has Hydrocephalus and Epilepsy. He has had about 60 brain surgeries to date). The behaviors that you're describing is very common in kids and adults with AS. My son has always fought me on personal hygiene, chores, school, and just about anything that I wanted him to do and alot of this was accompanied with frustration "tantrums"

My son is almost 16 and wasn't diagnosed until he was 14, so before that, not knowing and constantly questioning my parenting skills.

I suggest talking to his school district's special ed department about getting an AI (Austisticly Impaired) certification and to look into programs to help with schooling and services for Autism/Asperger's, and also look into AI behavior therapy to help your son.

For me, 13 yrs of regular therapy only went so far, but hit a wall when it came to the Asperger's behaviors.

Just remember, it's not your fault and if anyone says anything, just tell them that he has Autism and that is all you need to say. You can't help what others think, YOU know that your doing the best that you can for your children.

Good luck, I hope that you find what you need to help your son with this Syndrome.

Jennifer

2 moms found this helpful

T., I will write you more later, I have two kids with autism. One with Aspergers!! Getting people to understand is hard. Some people just will never get it and you will learn to be OK with that. Read!! Temple Grandin's books are awesome! Emergence is one of the best it is easy to read and gives you great understanding. Also Autism Speaks is a great site. Things like brushing his teeth it may hurt him because of sensory issues. What issues is he having at school. Maybe the kids are too loud and hurting his ears. He may have issues with the lighting. etc. Don't be too upset there is help for these kids but it is a lot of work and finding it and fighting for it can be hard but it is worth it. You are welcome to write anytime. Ill send you my email in a personnal note. Hang in there!! M.

2 moms found this helpful

My daughter was also diagnosed with Asperger syndrome a few years ago. They had said A.D.D. up until a couple years ago. I have also been embarrased over the years, but now I know they cannot help it. They need to learn social skills and it is a struggle for them. The best thing you can do is read and learn as much as possible. As far as telling the other people in your sons life I have a great book for that. It is called "can I tell you about asperger syndrome?" by Jude Welton It is a short book but it explains it very simply so that any reader can understand. It costs $10.00, I bought 2 just so family and friends could learn and understand. There are some people that are still not understanding and that makes me mad but most of them do. There are also books that your son can read to help him understand more. I have found places and things to do to help, if you ever want to talk please feel free to send me a message. It is nice to talk to other people who understand.

1 mom found this helpful

My son now 11 was diagnosed with ADHD when he was 5. Every day is a challenge. I have a very hard time getting him to school, brush his teeth, bathe him and ect. He also has wetting accidents, specialist found nothing wrong and he has yet to out grow it. When we talk about these issues he says he does not care about his peers teasing him. He also doesnt sleep and now takes meds to sleep. I know what your going threw. I dont know what to do anymore.

Hi T....
Your not alone. I have a 11.5yr old son, born with a genetic mutation called Sotos Syndrome. He also has Aspergers, oppositional defiance disorder(odd) and a few other things.
Gosh, I've tried to type a bunch of things there, but end up typing the longest message.... Please email me, if you'd like to.. I'd be happy to chat with you. My address is ____@____.com ... This sounds like your starting out new with dealing with Aspergers... I'd be happy to offer any assitance I can.

J.

T.,
I work with a parent that just had her son diagnosed with an asperger diorder. She and a few other mom's with the same have opened up a learning house and different support groups. If you want the name of the place and their contact info let me know. I will be very happy to send you her info. We realized that something was really wrong when her child was in my classroom. Stubborn is a big part. They say they can not focus on one thing but that is not true. Like you have seen with your son if he wants to he does. Her son had a video game that he was always thinking about. Some children, like my nephew, act out at school. They need to be taught in thier own enviroment. Too much noise and stimulation are not good and they will not learn that way.
Learn the degrees of the disorder from the Dr. or find out more on the net.

A.

Hi T.,

I do not complety understand how things are for you. I have a step son with Aspergers also ADHD he is now 19 and interactions can still be tough. He was 13 when I married his father. My husband said to tell you that it is almost imposible to be able to get the people around you to understand about your son. Unless they want to really learn about the disorder they will never understand. Being a parent of a special child like your son can be a very lonely experience. What you really need is to find a support group of similar parents that you can talk to and get advise. Hopefully there is something like this in your area.

Hi T.!
U R NOT ALONE!!! Remind yourself of that everyday!
I too have a son w/pretty much the description you listed. He was UN-Diagnosed w/Asperger's & ODD.. What Beaumont's Center For Human Development (where my son was tested.. our family couselor gave him the Asp/ODD diagnosis. What Beaumont taught us was that Asp. is misdiagnosed very often. ADHD combined w/other anxiety, emotional and maturity levels (my son displays immature (for his age and peer group norms)social behaviors and some language challenges..mainly now just when he 'flares').. I am headed out to do a vendor show..so I cannot email longer.. but later I can!! My son is 8 at the end of july and I just took him off of Strattera(was on it for apprx 4 months.. adderall before that..both meds seem to--after a while--exaggerate and WORSEN his anger/rigidness/inflexibility,,,etc..) I am in Commerce Twp Mi.. I also have a 10 year old daughter.
I look fwd to chatting w/you more. You sound like a GREAT mom!! Dont forget that God doesnt give us anything we cannot handle and these babes of yours (w/their challenges and health concerns) were 'given' to you for a reason.. you were meant to be their mommy! You had all the right qualifications for the position they were looking to 'fill' (baby mommy!)... sorry i have to run.. i could type tons more to ya.. looking forward to chatting later w/you! Have a great Saturday!

The most important thing is that you are not denying the diagnosis. I am a 5th grade teacher and I have had several students with the same diagnoses as your son, and the parents who accept the situation have kids who make lots and lots of progress!! All you can do is love him and advocate for him, educate yourself and do the best you can. Are you able to get OT for him? Remember that you need support, too. Take it one day at a time! ;o) Hang in there!

My daughter also has Asperger's. If you want to read some good books these are some GREAT authors. Rick Lavoie & Tony Atwood. I highly suggest Tony Atwoods book about parents and schools. I can't remember the name of the book because I loaned it out AGAIN. You will know what book I am refering to when you go on Amazon.com and serch his name.
My daughter is now 14. She is doing better with age. But, there are still days. Feel free to contact me.
C.
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My daughter also has Aspergers. I remember when I was told how totally alone and helpless I felt.I can totally relate to what you are going through.You are not alone .Every childs Aspergers can be different.different techniques work for different kids.My daughter had trouble when she first started school.1 It was a new situation she had never been in before which can send kids withAspergers in a total panic which it does.If we are going some where new or any where at all I give her plenty of notice Ex.Were going shopping today Then later say were going in a hour then10mins and so forth that helped her.to kind of prepare herself.2she would hide under the table at first because it was to much stimuli for her to handle so they started working one on one with her and seeing improvements.With all the things we were doing nothing seemed to help her and my sanity as much as taking out red dyes.I have seen dramatic changes in her since we took her off anything that has red dye.Honestly,It was like Dr.Jeckyl Mr. Hyde the difference So you may want to try it.She also gets things stuck in her headand sometimes repeats themuntil i say ok I heard you or if I repeat what she says .There is no changing there mind when there set on something thats for sure.You have to realize its not your fault or any one elses.Don't beat your self up about things .It makes things harder on you and does not help the child either If you just need to talk.I 'm here I could go on but don't want to bore you .I hope to here from you from one mom whos been there .K.

T., my daughter is almost 9 and has PDD-NOS (another form of autism), some things are very hard to deal with, but I have found with my daughter if I explain in very matter of fact terms why I want her to do things she is more inclined to do them: ex, brushing her teeth, I tell her teeth will rot turn black and have to be pulled out--so she knows why she must brush her teeth and doesn't give me a problem doing it---she also gets stuck on certain subject--animals is a very big one with her, and she knows so much about animals: I was told from her doctor to find what she enjoys and let her run with it---Hang in there it is hard, but it is so worth it. I'm not an expert about anything buy if you ever want to talk, feel free to contact me.
T.

T.,
I have a nephew who is on the Autism Spectrum. I believe his original diagnosis was Pervasive Developmental Disorder which is a very high functioning Autism. My sister-in-law has really empowered herself to find any and all therapies to help him and, I swear, the work she's done has made him into an almost different child. Most people who see him on the street today would never know that he is on the spectrum. She thinks that if he were to be re-diagnosed at this point, he'd probably be considered Aspergers (a step up from his original diagnosis)... That being said, tehre are tons of behavior therapies that you could look into as well as special diets. The special diet has been key for my nephew. He's currently Cassien (sp?) and Gluten free which means no dairy or wheat. I know it sounds very limiting but every time my sister-in-law tries to re-introduce one of those foods back into his diet, his behavior problems flare back up. I know this diet may not help all but it's something you may want to look into. There's a great book I've recommended many times on this site (and to friends) called "Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders" by Dr. Kenneth Bock. It offers many resources. Some good organizations are the National Autism Association and Defeat Autism Now ("DAN" doctors, as they're called, are focused on actually curing autism as opposed to just managing it). I know that your child is diagnosed Aspergers and many of my suggestions are pointing towards treating Autism but in many cases, the two conditions are both "on the spectrum" and treatments can be related. Best of luck and know that you're doing the right thing for your child. Those that love and care for you and your children won't judge your child's behavior. Just explain (like other posters have suggested) that he is Aspergers and needs a little more consideration. I've learned to embrace my nephew as a unique individual and by doing so have come to see the awesome little boy that he is :) For me, autism is just a small part of who he is. Over time, those who love you will hopefully see the same thing with your child...

T., you have your hands full and first off you need a BIG dose of "You're doing an AWESOME job". Did you read your own bio??? You and children have gone through major medical challanges and seems to beaten the odds. You're also trying to finish school....WOW

So to answer you question: how do I make other parents and adults see that things are a bit different than other children?

My reply to other parents and adults would be, don't judge us we have all been given different challanges in our life, my boys are special in so many ways...sometimes I have a hard time seeing it too. But your help is always appreciated.

You really don't need to validate your situation to anyone. You sound like a great mom who is doing the best she can with the challanges given. From what I understand Asperger children are very smart - you just have to find "his" way of making it work. I'm sure your doctor could give you numbers for support groups in you area.

Smile and look at what you have done so far...

My daughter has a mild form of Asperger's and has ADHD and ODD on top of it. I usually just explain that she has these conditions if the situation warrents an explanation for her behavior. Surprisingly a fair amount of people have heard of Asperger's and nothing else needs to be added, if it does I just explain that it is a mild form of autism, this seems to do it for those not in the know.
Sometimes I am asked for more info and I try to explain that she doesn't get the social interaction the way the rest of us do.
She is very stuborn and will be passive agressive on doing what she want, this is a form of the ODD (Opositional Defiante Disorder -it is just what it sounds like). Part of your discription of your child sounds like ODD, you may want to look into this as well.
My daughter isn't the easiest of my children to deal with but she can be very loving when she wants to be and is tuned in to the rest of the family.
My best advice is to just have patience, I know this isn't always easy but it helps.
Good luck.

T.,

As a parent, all you can do is guide your child. Don't be too hard on yourself if he's not doing what you'd like him to do. He is the Self he was meant to be and he will have to learn to navigate himself on his own. All you can do is offer suggestions.

My best friend has two beautiful children who have autism, one has aspergers, with the other it is more severe. My second oldest has shown signs of Asperger's his whole life. From puking up his food just because at meal times and not being to keep eye contact, to his personal range of sensory issues, and social difficulties.

As a matter of fact, my brother in law (now a teen) has Asperger's as well, and he is doing great. I'm so proud of how far he's come in the last few years. Autism is not a sentence, a "normal" happy life is still more than possible. We all have our ideosynchrocies, people with Aspergers just have a few more, or more pronounced. :)

With my own son, and with my best friend's children too we've found that the kids do much better when the adults in thier life are aware of what is going on and working to help them without stressing that they're "sick" - just approaching it as "this is what you're doing" and it needs to be dealt with. And also stressing their personal responsibility for their behavior. It is harder for a child with autism to control thier behaviors, some of them will be out of range of control without medicine, but it is important for them to still try. They will be stuck with themselves their whole life, it's important to help them learn to deal with themselves positively. I work hard with my son to help him recognize his own "warning signs" and react accordingly. For example - he talks with a certain "tone" in his voice just a few minutes before he gets too carried away to control himself. He used to be a big hitter, and now he bites his finger to maintain control when he wants to hit someone. Not that that's my favorite method, but he came up with one that works for him. He is in second grade right now and doing the best he's ever done (though he still spends half the month with his name on the board and has trouble turning in his homework) he has even made his own friends this year (a big deal for him! He was always asking why no one would play with him) and even has a *girl* that likes him. His teacher is very sensitive to his sensory needs and I think that makes a HUGE difference! My school district stinks in general as far as helping autistic kids, but my friend in the Roseville area has helped advocate for many families and they have GREAT programs out there. If you ever need to vent, feel free to message!

And as far as being over protective, I feel I am being that way sometimes too, but it is very normal when your children have had health issues early on especially - it sort of trains you as a parent from the get-go to think "is this too dangerous/risky for my little one?" "will they be OK?". My sister was very very sick as a child - she was a preemie, on a ventilator for quite awhile, had MANY, SEVERE allergies (two typed pages that included such nebulous things to avoid as "cold items"), Reflux, and Asthma. The doctors all told my mom until my sis was about 10 that she would likely die and my mom shouldn't get too attached, and should prepare herself for the probablility. (My sis is 24 and fine except for still having some allergies, and migraines occasionally) my mom felt a *tremendous* sense of responsibility for making sure her child made it, a tremendous sense of fear that my sister's health would fail on "her watch" and struggled with those feelings for a long time. So I guess I'm just saying, being overprotective is perfectly normal in your situation, so don't beat yourself up over it. Besides! Over protective parents make wonderful advocates for thier child's well being when the child is in need of one! :)

As far as making other parents understand, not everyone will. For a long time I just told strangers who looked annoyed by my son's behavior that he had neural difficulties - and this seemed to evoke a fairly compassionate response - more so than some other ways I tried of explaining things. Just take comfort as best you can, no matter how embarrased you may feel in the knowledge that you are doing the best you can to help guide your son and help him be the best, healthiest him he can be. Also, my best friend just started a special vitamin therapy with her sons (her doctor had pshawed this course of treatment a few years ago, so she did it sans medical advice) and they are doing GREAT! The amount of medication they have to take has lowered dramatically and she feels that they may eventually make it off the meds. (The same doctor was so impressed and excited by the results, she intends to sell the vitamin course from her office and has begun treating other patients with it) I will find out the name of the supplements if you like. Just let me know!

T.,

I read the responses before I wrote. Probably the best thing is you see you are not alone and can have a lot of support. I have worked with children with all different disabilities since I was 15. In all these years, I am 53, I have had wonderful experiences with all the children.

When you go to the school this year, go with the diagnosis from the doctor and have him evaluated by the school, which is free, for the correct programming. It may be in an AI room or a resource room depending on what the school has to offer at his building. You will have a few people to speak to throughout the process. Please ask for your rights as a parent. There is a booklet they should give you. Yes, you will have to fight for your child but any parent does if they want what is good for their children.

The hardest part maybe when you have to let go a little for him to grow too. Whether you child has a disability or not it can be hard to let go a little as a mom. We want to protect our children from all harm. To an extent they have to learn to deal with those harms too. Some people will understand and some never will. You will have great teachers and some not so. I agree with what the others have been telling you. You are not alone, talk with them and read so you understand and ask when you don't . Children are amazing !

D.

HI T.,
I have a 9 year old that has shown some symptoms of Asperger's and has had issues with anxiety, and has ADHD as well. Which one of your boys has it? It is hard to explain to other people that your child is a little different. It is even harder to understand his feelings. We struggled for almost two years, and are finally seeing good results. (we still have our challenges, but not as many). We thought we were going to go crazy explaining why something needed to be done, and hoping for the best.
I recommend a book called The Explosive Cild by Ross W. Greene, Ph.D.
A.

We have 4 daughters and our second girl has asperger's. She has been in the "centers program" in our public school system since 3rd grade. Depending on which school system you are in, you will get to benefit from the programs they will offer. She is now in 8th grade and getting ready for high school. She is working on maintaining conversations, and working on the assigned school work, (her fixations are comics and anime) she really has had a lot of work to do when it comes to the socialization outside of our house, I wish that I could say there is an easy way to get everything to be smooth and great, but she can be a tester. In different ways from any of our girls.
I heard a story once of a woman who had a baby with down syndrome. She wrote a story and likened having a baby who doesn't fit the "mold" to planning a trip to Italy and getting off the plane and hearing "Welcome to Finland!!".
I always try to have a break at some point of the day even if it's just going to Tim Hortons for a coffee, blaring the radio all the way there and back!
Your child is a beautiful being, try to find a balance of the fix and the flow, best of everything to all of you
K

You can't make them understand how Aspergers affects your life or your childs life. You can't explain things are different for you, they have to see it for themselves. If they are true friends they will look past the dsiagnosis and help you deal with it. If they're judgmental just keep reminding them "He has Aspergers". Two of my three boys are Aspergers and the third is right on the border. When I noticed people were being judgmental because I had to restrain my kid from running off or one of the others acted out I would tell them outright, "He's Aspergers". If they look at me funny I ask them if they have seen the movie "Rainman" with Dustin Hoffman and Tom Cruise. To that I normally get a "yes" then I explain to them that it is the same disorder as in the movie, my kids just aren't quite as severe. Then I get understanding. Once you've crossed the hurdle of understanding with those that are close to you then hopefully they'll be willing to help you more. I wish the best for you. Knowledge is power!

BLessings - S.

I have a very good friend that has two daughters one has autism and the other asperger's disorder. They live in Atlanta and I spent Thanksgiving with them and witnessed first hand her daily life. My suggestion to you based on what I know Julie has done, is to not be concerned with what others are thinking right now. You need to get all the information you can to be equipped to address your child's unique needs. Find a support group and research the options in therapy that will help make your child as high functioning as possible. In time, once you have accepted it, lived with it and exposed your child to the therapies that will best help him. You will be much more at peace and confident and that is what your child needs most. Your child is in tune to you and your energy and the sooner you are equipped to help him live his best life the better he will do. I would be glad to get the resources Julie uses/used for her girls and pass them along. Best Wishes !!

T., I have a child with Asperger Syndrome. I was encouraged when I found this on the Web. I searched "famous people with Asperger"

Aspergers
Albert Einstein
Alan Turing
Al Gore
Andy Kaufman
Andy Warhol
Bill Gates
Bob Dylan
Carl Jung
Hans Asperger
Henry Ford
Isaac Asimov
Isaac Newton
Jane Austen
Mark Twain
Michael Jackson
Michael Palin
Mozart (maybe ADHD instead)
Nikola Tesla
Thomas Jefferson
Vincent Van Gogh
Woody Allen
Axl Rose
Buzz Aldrin
Ernest Hemingway
Tchaikovsky
Winston Churchill Albert Einstein
Alexander Graham Bell
Hans Christian Anderson
Henry Ford
John Lennon
Keira Knightley
Leonardo da Vinci
Noel Gallagher
Quentin Tarantino
Tom Cruise
Whoopi Goldberg
Winston Churchill (disputed)
Stutter:
Marilyn Monroe
Sylvester Stallone
Winston Churchill
Alexander the Great
Bodicea
Hannibal
Joan of Arc
Julius Caesar
Lenin
Napoleon
Peter the Great
William the Third

Aspergers characters in film and TV series:

Commander Data from Star Trek Next Generation
Mr Spock from Star Trek Original Series
Rodney McKay from Stargate Atlantis
Seven-of-Nine from Star Trek Voyager
Chauncy Gardener, played by Peter Sellers in Being There is a particularly good portrayal

Once you figure out your child's particular tendencies and learn how to manage them, it's not so bad. These are special kids. Also, read "Look me in the Eye: My Life with Asperger's" by John Elder Robison.

It'll be okay! Don't let anyone tell you you don't know how to parent. Also, be selective about who you tell about his condition. Educators, close family are okay. Other kids may judge and stigmatize, so just be careful about that. As you child gets older, let him choose who he will tell.

T.,

My 9 yr old son was diagnosed with Asperger's 1 1/2 yrs ago. I know the shock and pain of early diagnosis. There are a lot of good books on understanding the disease, and alot of support available. You will want to ask for the school to evaluate him so you can get support set up for him asap. Of course asap will mean for next school year at this point, but start now, be pushy, because it's a process.

My son has a fabulous therapist who specializes in kids on the autism spectrum, and used to be a school psychologist so she is great resource for working with teachers and schools.
Her name is Alice Nasol and her number is ###-###-####.

Asperger kids have alot of challenges, but also have alot of wonderful qualities as well. I know someday my son will change the world. Please feel free to write me offline- I've been through what you are going through. I promise it will be okay.

T.

Hello T., Can not help you with your son's disorder, but I can help you deal with your son. Mine was seven when he had a very bad accident, was bed ridden for almost a year. He went through severe Post Tramatic Stress Disorder, and had temper tantrums for many years afterwards. He refused also to do simple things like brushing his teeth. I had to learn that being a parent was still the same, despite the extra challenges, in order for my son to become a healthy adult. Don't make excuses for him. Still hold him resposable for his actions. The book "Making children mind without losing yours" by Kevin Leman, was the best book that I ever read for dealing with my son. It's not for just special needs kids, but kids in general. Holding them accountable for themselves. It was so hard for me to be consistent with disapline, because I felt so sorry for what he was going through. But when a friend pointed out that it was my son who I was hurting in the long run, it make me rethink the situation. I had to tell my self that I only had so many years before he turned 18 and would be an adult, and so I only had x number of years to guide him to adult behavior. By setting this goal for myself, I was able to stay on track. My son is now 22, getting ready to graduate from college, and will be getting married this summer. Now is my pay off. All of the hard work, and sad years have showed to be effective. I wish that his childhood had been different, but reality is what I had to deal with. Your son is 9, halfway to adulthood, the clock is ticking, so stay focused and consintent. Your rewards will come later. Good luck, and feel free to keep in touch. S.

Get creative. For one, get in contact with support groups who might have a buttload of suggestions.
And/or make yourself one of those loop de loop ribbons to pin on yourself, with maybe glitter to indicate you're a mom to an ADHD child. They'll ask about it, sure. But really a support group will give you lots of tips and advice.
I have a friend with an ADHD child. He's the same age as my youngest (17) but I always considered, and still do, that she tends to just about suffocate and limit his potential. Y'know that guy Ty something or other on Home Makeover? Goes around with the megaphone. He's ADHD. Look what he's achieved. Always see the potentials. Look for professions that tend to be tunnel vision focused. Maybe that would be how to guide your son.
But remember; this is a growth and learning possibility for you, in addition to your schooling, and for your son. Can you redirect your schooling to have something to do with this?
Well in any case, don't be embarassed. No one gives us guarantees when we become parents. We do our best on what we know, and maybe more if we learn and grow. Nice poem. But true. Life might have provided a slight curve in the smooth road for you, but you have the chance to use that minor hurdle, and turn it around for you and ultimately for everyone. If you'd like to connect with another
ADHD mom, let me know and I could have her contact you. But I think there are other moms here on Mamasource in your shoes too. You are not alone. Thank goodness for that!

From the reading I have done on this subject, many times these "disorders" are caused by something the child is EATING. Check it out with a homeopathic, not an allergy MD. It could be a simple food allergy. Go to ahccenter.com

T., I have spoke with many about a natural way to resolve ADHD and am happy to share with you if you want to send me your e-mail address. Clinical studies at the University of California Berkley have proven that pycnogenol can and does help - even stop - ADHD. Let me know if you want to know more!

S.
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