Any Other Parents of Kids with Aspergers?

Discussion in 'Off Topic Area' started by Capt Ann, Oct 23, 2006.

  1. Capt Ann

    Capt Ann Valued Member

    My 9-yr-old son was just diagnosed with Asperger's Syndrome, a 'high functioning' form of autism. He has managed to succeed (and excel) in school this far. He was misdiagnosed and mis-medicated for three years as ADHD.

    I am somewhat angry that he could go so long with neither the schools nor his Dr. catching this as the problem. School officials and peers just thought he was a little 'weird', or that my husband and I were lousy parents. I am wading through tons of websites, books, and expert advice to try to understand what the diagnosis means for him and for our family. Right now (third grade) he is doing exceptionally well in school, except for the social issues, including some anger and anxiety behaviors.

    Anyone else out there with experience or familiarity with Asperger's?
  2. Lily

    Lily Valued Member

    Hi Ann,

    Timely topic I think. I'm training to become a teacher and was in a day workshop yesterday discussing Asperger's with my group.

    Detection usually happens in the home environment from what we have discussed and in a class of 20-30 students some of the behaviours/symptoms will just look like classic inattention, misbehaviour,

    A child with Asperger's need not be disadvantaged in a class and teachers can do the following to cater to your son:

    1. Give him clear, set routines
    2. Don't make sudden changes to a set routine as some children who have Asperger's tend to get thrown by sudden change and feel loss of control and overwhelmed by stress. The teacher should give your child advance notice of any changes to routine if possible.
    3. Set up a card system for your son to help self-regulation. When he feels that he can't focus or is feeling angry/not in control he can go up to the teacher and give her the card and take a few minutes time out or sit away from students for a while.
    3. Set up a class buddy for your child to get to know and learn interaction skills with in a safe environment
    4. Praise your child's academic achievements which I'm sure are normal or above normal
    5. Do role plays in class and model simple but appropriate behaviour to the whole class. Then later speak to your son in class as an aside to discuss the role play. You probably have found in your research that social behaviour is an issue for children with Aspergers so he needs Coping Strategies for LIFE to regulate himself and allow him to interact and not withdraw from his peers.
    6. Try to include topics with their area of interest (children with Aspergers tend to focus on a few specific areas and find out everything about it). Try to expand on these interests but do not overly encourage fixation on one or two topics.

    What we have found as well is that improved teacher strategies not only benefit a child with special needs but all other students in the class as well. Go and talk to his school teacher and maybe find a local support group if you can.

    That's just a little bit I know...not much but hopefully its a start. I'm really sad to hear that he was misdiagnosed with ADD as well. So frustrating.
  3. Athleng Nordic

    Athleng Nordic Sadly passed away. RIP. Supporter


    This is one of many reasons I detest modern medicine, and the liberal agenda. Schools, Teachers, and society in general want everyone to fit into a single mold, and if you don't then "Drug'em Up". The the doctors who are now required to dope up everyone, and haven't the foggiest clue what the problem really is decide to experiment with our children. RRRRRRRRRRRRRRRRRRRRRRRRAAAAAAAAAAAAAAAAAAAAGGGGGGGGGGGGGGGGGGGEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!!!!!!!!!!!!!!:mad: :mad: :mad:

    Gonna walk away now before I blow! :bang: :bang: :bang:
  4. ember

    ember Valued Member

    I have a 13-year-old brother with both ADHD and Asperger's. They found the ADHD in Kindergarten, but the Asperger's took longer and a team of observers.

    I agree that there is a tendency to medicate and not look deeper, but on the flip side, there are people out there with real problems who actually do need the medication.
  5. Lily

    Lily Valued Member

    Agree with you Nordic, the medical professionals and some in the school community just look for a quick fix and poor little children are overdosed for no reason. Many parents feel pressured and at their wit's end so they are easily led down this track.

    Just freaking disgusting how medication is handed out like sweets.
  6. Athleng Nordic

    Athleng Nordic Sadly passed away. RIP. Supporter

    What's worse is how the pharmacutical companys can advert thier crap and make everyone feel like they can not live a happy life unless pumped up on thier durgs.


    I apologize, I never actually commented on your problem. My family doesn't have anyone who is Autistic, but a very close family friend in VA has a son whom is autistic. I pop off an email to them and ask about wbd sites and local places since you're right next door.
  7. Lord Spooky

    Lord Spooky Banned Banned

    My five year old son was diagnosed as having ASD (Higher Functioning end of the spectrum) when he was two. Just let me know what you're after.
  8. Capt Ann

    Capt Ann Valued Member

    Thanks, Nordic! I appreciate that you'd do that for me and my boy.

    Thanks, Spo! Right now I have two big needs:

    1. Do you have any info or ideas on how to deal with 'sibling issues'? I have three children, two of whom don't understand why we're spending so much time and energy on the youngest boy, and why he acts so differently and doesn't seem to get in quite as much trouble as the others would, if they had done some of the same things. I want to pull them into being part of the solution, not alienate them from having anything to do with, or to resent, their brother.

    2. Can you recommend anything short and to the point to help explain what is going on to Grandparents and other family members/friends? How about to give some behaviorial 'pointers' to teachers, school officials, bus drivers, etc?

    Thanks a million. I am very sorry to hear that you and your family are going through these same challenges, but I am very grateful that you are willing to share what you've already experienced/learned.
  9. mai tai

    mai tai Valued Member

    i once did volenteer work at a camp for asperger kids. it is no suprise that your son is doing well in school....alot of kids in the cmp were flat out brilliant....

    lot of them would fixate on a topic this one boy loved medival castles.....thats all he would talk about.....hard tobelieve that a simple conversation about what he would like for lunch could turn into a disertation on castles.

    btw after two weeks i am also a expert on medival castles.
  10. Knight_Errant

    Knight_Errant Banned Banned

    I have it myself- the learning support people at my art college picked it up this year (I'm 21). At school I was just treated as a pain in the rear end, there was no real attempt to get to the bottom of a pretty obvious problem. So I went through pretty much the same stuff as your son is doing now. The thing to remember is that, if he's anything like me, he doesn't understand what's going on. I remember being very confused and upset.
  11. Capt Ann

    Capt Ann Valued Member

    FT, thank you for being so open about what you had to go through.

    Yes, he is very upset and confused about a lot of things right now. He has a high level of anxiety anyway, and then he hears everyone whispering about how 'different' he is, and about this 'Aspergers' thing. He feels very guilty about the way he is, and I'm having a hard time getting across to him that he isn't 'bad' because of it.
  12. Knight_Errant

    Knight_Errant Banned Banned

    Sounds very familiar. In my case, my parents insisted that a child psychologist was brought in. She made some recommendations, which the school proceeded to ignore completely. Schools in general are very bad at helping children with aspergers and autism. I think what kids with aspergers need more than anything else is somebody to listen to them. Also, he needs to know that he isn't alone. It might help if you could find a 'role model'- somebody who went through the same kind of stuff who he can look up to.
    1. What my mum did was to give rewards to everybody for when I behaved well. That way, my brother and sister started to help.
    2. Tricky. You might just say straight out 'he has aspergers', but in my experience people didn't know what that meant. But in many ways, that's the best thing to do, as long as he understands that you don't blame him for it.
    Hope that helps.
    Last edited: Oct 25, 2006
  13. wrydolphin

    wrydolphin Pirates... yaarrrr Supporter

    As a former teacher, I would suggest insisting that his teachers become familiar with the condition and perhaps receive some training on how to teach a child with Asperger's. The truth is, when we used to get training on "populations with special needs" the training was always concerned with dyslexia. And truth to tell, it wasn't that great of a training session anyway. So sometimes, the reason teachers don't do well with a certain condition or teach that student poorly is because they don't understand what they are supposed to be doing. Sure, you will run across the occasional teacher who just doesn't care, but this is more rare then people seem to think.

    So you have to take an active part in your son's education. If the school isn't willing or able to teach the teachers how to handle you son, you might have to do it yourself. Unfortunately teachers don't come pre-equiped to deal with every learning or behavioral condition known to man, they have to learn. Based on my experience, any teacher would be more then willing to learn to help your child in their classroom as it would make a more harmonious experience for both your child and them.
  14. Lord Spooky

    Lord Spooky Banned Banned

    That’s the best thing you can do IMO, involve them!

    My other boys are 12 and 8, both older than my son (Cameron) who has the ASD diagnosis. Since he was first diagnosed we’ve tried to be very open about it with them. My eldest is obviously in a bit better situation (due to his age) to understand the issues surrounding Cameron but with both of them we’ve explained that Cam’s brain is different to theirs and that he will get scared easy and frustrated as he has trouble at times making sense of what’s going on around him.

    He had communication difficulties when he was younger, well still does to a degree, and it took him a while to talk so we started learning Makaton with him to help him in this area, his brothers joined in with this which again helped.

    They both get frustrated with him at times but to their credit try not to take it out on him. Even though my 8 year old has had to put up with the brunt of Cameron’s temper over the years he still does his best to tolerate what’s going on even though at times it’s obvious he doesn’t like it.

    Throughout the whole process we have involved them and talked to them about what it’s like to “be Cam” and tried to get them to understand that he doesn’t see the world in the same way that they do and that it is this that will make him react in certain ways not anything they may have done. I think that trying our best to show them what it is like for him has helped them understand him and not resent him or his behaviour.

    Tell them that he finds the world overloading at times and that this can cause the anxiety in him. Talk to them about the hypersensitivity he may be suffering and that the world is a lot louder and brighter to him than the rest of us.

    Grandparents, friends teachers all need to be aware that people with ASD like structure change makes them anxious. Also tell them that he may not be being naughty he may be being “Autistic” there is a difference. Over the years we’ve learned to tell when Cam is misbehaving, which he does just as frequently as any other five year old, and when he’s reacting due to his Autistic traits.

    Key things to explain to them would be:

    1. He doesn’t “see” the world like they do.
    2. He will be very confused especially now.
    3. He can’t “read” social signs the way the rest of us can i.e. facial expressions hence any “inappropriate" behaviour that may occur.

    You may want to use this analogy I got from the NAS website:

    Show them that to a greater or lesser degree this is how he may feel.

    Also here are a few stories that may help:

    Your son is also in the situation where he “knows” he is different my son is experiencing the same thing of late and calls himself stupid, which breaks my heart, even though potentially academically he’s more advanced than other “typical” children his age.

    He knows he isn’t the same as his brothers this is something we are trying to help him come to terms with by re-enforcing all of his accomplishments. We show him his uniqueness and that it’s a good thing. Cam has had a rough time this year he was looking forward to being a “big Brother” but unfortunately we lost our baby boy in June (still birth). He was so looking forward to “having a little friend of his own” as he put it, he can find children his own age intimidating at times. This has been another obstacle for him, and us, to over come but he’s shown remarkable resilience throughout this and we’ve found that although he gets confused he can be very certain about some things.

    We feel like over the years we’ve had to fight the world to get Cam help. Everything from getting the medical establishment to listen to us to finding him the right help for school, hell even finding a bloody school at one point, but there are loads of people out there in similar situations who either have been through this or are going through it so please don’t feel alone.

    Just let me know if there’s anything else you want to know. I’ll get my other half to look at this thread as she’ll probably have other stuff to add.
    Last edited: Oct 25, 2006
  15. Capt Ann

    Capt Ann Valued Member

    I just came across a great (small) booklet to help explain Asperger Syndrome to children. It is called, "This is Asperger Syndrome", by the Autism Asperger Publishing Co., Shawnee Mission, KS, USA (ISBN 0967251419). It is short (24 pages), easy to read (almost like a cartoon/coloring book), and to the point (it covers all the basics about how Asperger kids see, hear, feel, and think things differently than others, have trouble in social situations, difficulty with abstract language, anxiety with change, etc.).

    I had all my kids read the book together before school today, and discuss how the child in the story is like/different than Ryan, and how the child is like/different than each of them. I thinkit really helped my daughter especially understand her brother.

    Anyway, in case some other parent finds this thread months/years from now, I thought I'd recommend the book for helping siblings, classmates, peers, neighbors, and relatives understand some of what Aspergers means for your child.
  16. Wax

    Wax Valued Member

    My mum (special needs teacher) recommends a book called 'The incident of the dog in the nighttime' to teachers and other family members of kids with aspergers, apparently it shows fairly well whats going on in their minds.

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