hello I'm new here...

Discussion in 'General Parenting' started by dandrews, Nov 19, 2008.

  1. dandrews

    dandrews Guest

    I am wondering if anyone knows where I can find info about asburgers syndrome (don't think I spelled that right).

    My 13 yr old daughter has been on medications for ADHD since she was 6 and bipolar since she was 9. I kept telling them I think its something else, I don't know what but it she just doesn't fit bipolar from what I've read about it anyway. It just didn't seem right. She's been to lots of doctors, they all have said they don't want to diagnose her because they don't like to label kids but they think bipolar. Now her doctor that she has had for a couple yrs now says I don't think shes bipolar, I think she may have asburgers syndrome and she changed her medications...this is the first night of new medications so no way for me to know if its going to help, usually medication changes take a at least a week or more to see if it helps. I just want to find out about this new thing that the doctor has brought up and is medicating her for.

    thanks for any info
  2. flutterbee

    flutterbee Guest

    It's called Asperger's Syndrome and is on the Autism Spectrum. There are no medications specifically for it, rather therapies and interventions.

    I'm a bit drained tonight, but others will come along with more info.

    Welcome to the board.
  3. TerryJ2

    TerryJ2 Well-Known Member

    Hi dandrews, welcome.

    I have a good friend who has Asperger's and he was on ADHD medications for a long time, but weaned himself off of them. He is 18 and no longer on them. He is highly trained by his mom (she is a workhorse!!!) and can make good eye contact and function well in society. He drives well. (Road rules are rules and most Aspies like those types of rules. However, they do not like other rules and can make up their own. Like, they aren't breaking into a house if the door is unlocked.) He is horrid at math (the opposite of Rain Man) but good at computers and has pretty good people skills, as long as the people don't try to manipulate him, because he's pretty naive to all of that. He's generally a happy adult, but as a child, had rages and tantrums and was always hyper, hyper, hyper. He's got the typical accent (everyone thinks he's from the upper E. Coast, LOL!) and is a bit "stiff" in his body language.

    Asperger's and bipolar have a lot of similarities in kids. Bipolar mixed states can mimick Asperger's and vice versa.

    Both spectrum disorders require lots of sleep and strict routines for the kids. I've got several books on my shelves about Asperger's, and regardless whether my son has it, the ideas and tools suggested in the book work very well for him.

    13 is a pretty good age to figure out which way your daugher is going. You didn't post your city, but if you're in a big city, you should be able to find a good neuropsychologist who can do testing. Do NOT do the 4-min interview like I started with--a total waste of time. You want the long testing that takes all day.

    My son's psychoeducational testing is ready and we meet with-the dr in the a.m. (Thus, I am wired and can't sleep!!!!)
    After that, we send the results to a psychiatrist, who will offer her own opinion. Every discipline has their own opinion so be prepared for a long path.

    One thing that this dr suggested was for me to watch The Big Bang Theory on Monday nights. It's hysterical. It's 4 brilliant geeks who live across the hall from a blonde bombshell, and the interaction is great. One of them is pretty typical Aspie--talks like a scientist and couldn't care less about hurting other people's feelings, it's all about the facts. One character is more sympathetic but definitely a nerd, and the others fit in between somewhere. They all wear nerd clothes and couldn't care less what they look like, or dress the way they think is cool, but never "get it."
    (My son fits that mold. He doesn't care if he's wearing high water pants, white socks and a shirt with-a huge hole in it, as long as he has access to a computer game.)

    on the other hand, his rages don't always fit an Aspie profile. Aspies tend to get super frustrated when they can't achieve something, and when their routines are disrupted. But with-my difficult child, often I can see a rage coming days in advance. It's like a black cloud that gets worse and worse and them BAM! he explodes. Afterward, he is remorseful, and very tired and wants to sleep. That's more bipolar.
    He could very well be both.

    I hope that helps a bit.

    I want to reiterate that the type of dr you have will affect your child's diagnosis. Asperger's is neurological. Bipolar is chemical. Psychologists often miss Asperger's, and some psychiatrists do, too. Specially trained neurologists with-training in psychiatry are generally the best at identifying it, in my humble opinion.

    Best of luck!
  4. KTMom91

    KTMom91 Well-Known Member

    welcome, dandrews!
  5. Marguerite

    Marguerite Active Member

    G'day, dandrews.

    As husband says (paraphrasing "Arsenic & old Lace"), "Autism doesn't just run in our family, it gallops!"

    difficult child 1 (our older son) was always different and a handful (although a good kid, but needy) and was originally diagnosed and treated as ADHD for years. The ADHD medications did help him but never fixed everything; he was my first experience with GFGdom and so I was often struggling in the dark, not knowing what questions to ask or how to get things addressed. Meanwhile the poor lad was trying to cope at school but finding the sensory input from all directions to be total onslaught and completely unworkable. His older sister was very bright and capable; their younger sister was similarly bright and needing to be accelerated into school and we had to hunt around to find a school prepared to take her, so the kids ended up at a city school experienced in dealing with a wide range of needs, difficult child 1 ending up with his sisters.

    Then difficult child 3 was 'different'. We had looked for help (with both boys) and kept getting told, when the boys were very young, that because boys develop more slowly than girls that we were worrying unnecessarily and they were just typical boys. But opinions can vary widely - one doctor would tell us that difficult child 3 was OK and not to fuss about him ("Stop trying to find things wrong with your children!" got yelled at me by one doctor, in front of other patients in the waiting room) while others got angry with us and called the authorities on us for apparently neglecting our son's care.

    Sometimes you just can't win.

    It was because we were trying to get answers concerning difficult child 3, our youngest child, that we asked for a harder look to be given to ALL our children. difficult child 1 was now in his early teens and it was increasingly obvious to us that there was something about him that just didn't fit the ADHD profile; ADHD seemed to be part of the picture, but the biggest problems were unlabelled. Also by this time we were seeing problems (behavioural and learning) in our younger daughter, previously diagnosed as 'merely' a child genius.

    Asperger's Syndrome was something I'd never heard of. However, knowing (now) that it is sometimes referred to as "little professor" syndrome, makes a lot of sense. Our genius daughter, our youngest son with prodigious skills in some areas - it all seemed to fit the Asperger's picture much better than ADHD.

    To cut a long story short - we eventually found a doctor prepared to at least give a provisional diagnosis. "Somewhere on the autism spectrum" was where he put difficult child 3 (technically the only patient) with a recommendation to get ALL the kids seen, especially the younger three. Then we found a pediatrician who diagnosed formally - both boys definitely on the autism spectrum with difficult child 3 fully autistic and difficult child 1 having Asperger's. easy child 2/difficult child 2, he said, had some Asperger's traits but not enough for a diagnosis. All three also were diagnosed ADHD on top. All three were put onto dexamphetamine. difficult child 1 had previously been on ritalin with some limited improvement.

    That was 11-12 years ago. Since then we've learned a lot, especially after joining this website.

    We had the kids assessed in detail by a psychologist experienced in assessing kids with autism spectrum - she confirmed the diagnoses. Again, difficult child 3 was declared to be fully autistic, not Asperger's. I wanted more so got him into a highly recognised clinic in Sydney. They were VERY pessimistic, perhaps because when they assessed him he as still mostly non-verbal and they did a psychometric assessment which required them to ask him questions verbally. if they'd given him a written test he would have understood the questions, but he was not good at understanding what someone said. Even today, at 14, he understands better when it's written down. Yet his hearing is perfect. The clinic told us to not expect difficult child 3 to ever go to a normal school, told us he was "borderline" (ie retarded, in the old parlance) and that his skills were simply 'trick' memory things, no intelligence lay behind any of it. They also assessed difficult child 1 and said he wasn't Asperger's at all.
    They were wrong on both counts, because there were big holes in their assessment methods and they were not prepared to be sufficiently adaptable.

    Now - difficult child 1 is getting married in two days. He is still going to need a lot of support but the positive characteristics of someone with Asperger's are what has 'sold' him to his fiancee. Aspies are intensely loyal, loving, law-abiding (their own understanding of the law) and generally do best with honesty. Occasionally they may try to lie by omission, or limiting the truth they tell, but they find lying difficult to do and often avoid it. They generally cannot be creative with the truth.

    difficult child 3 has won awards for his academic progress. His savant skills are less obvious now than when he was a pre-schooler, but are the reason he is doing so well. From initially being told he was retarded, we've now been told his IQ is modestly measured at somewhere around 140.

    Now to girls - my girl, at least. She is different to her brothers. In my reading I'm finding that girls with Asperger's often seem more capable in some areas, less os in others, compared to boys with Asperger's. I read somewhere that the rule book is being rewritten because trying to diagnose girls with Asperger's is difficult. We're still considering the likelihood that if assessed today, easy child 2/difficult child 2 WOULD get an Aspie label.

    I mentioned the ADHD component in my kids - I do believe the doctor was correct with this. They DO all show improvement on stims. However, the dose difficult child 3 seems to need is huge, his new specialist is concerned about it and wants to experiment with cutting it back and trying something else. The dosage doesn't seem to match the extent of problems we see if they miss their medications - difficult child 1 missing his medications is a huge problem, he gets aggressive and sometimes violent off his medications and yet his dose is half that of his little brother's.

    Things I've learned on this site that have helped me -

    1) For behaviour issues, get a copy of "The Explosive Child" by Ross Greene. It can really help, it doesn't matter what the diagnosis is. It's also something YOU can do while you're waiting to get more 'professional' answers. If you want a quick preview of the book, go to the Early Childhood forum and see what the stickies say on the topic. Or get a copy out of the library - but get a copy and read it. It can show you a different way of looking at your child, looking at discipline issues and making life easier for everyone.

    2) To get an unofficial preview of whether Asperger's fits, look at Pervasive Developmental Disorder (PDD) on a broader scale. Again, it's unofficial - we can't diagnose on this site even if we were professionally qualified. It's not the sort of thing done online or long distance. However, if you read up on it (Pervasive Developmental Disorder (PDD) = Pervasive Development Disorder, it's the big umbrella under which autism, Asperger's and PDDNOS fits) then you can go in to a specialist's appointment a bit more informed. So have a look at the Pervasive Developmental Disorder (PDD) questionnaire on www.childbrain.com. Go through it with your child in mind, use the hot links to the support information on each question if you need it, and see how your child scores. Print it out regardless of the result because even if she scores as "no Pervasive Developmental Disorder (PDD)" it can still show a doctor the things that are concerning you.

    3) Keep a diary on your child. I have my diaries on the computer, but we also had a "Communication Book" which travelled in difficult child 3's schoolbag, to save on having to organise to talk to the teachers after class on an almost daily basis. It was so much better to quickly jot down, "He had a bad night last night due to the storm, he is likely to be more tired plus more distractible."

    In summary, whatever is the problem for your daughter, there are two directions you need to work on at the same time.

    1) You need to work on a diagnosis and getting official help put in place (as required) through school. AND

    2) You can at the same time get your own understanding of your daughter to help you handle her, to help her learn to adapt to the world as best as she can. Be prepared to throw out the rule book and turn your parenting methods upside down. Old ideas based on a heirarchy - "I am the parent, you are the child" - often can make a child like this worse. Where there are possibly delayed social development issues, the child is unlikely to learn social skills "by osmosis" like other kids do. Instead, they will imitate what they see, and they will often imitate the adults around them. So if the child is surrounded by adults who present as stern authority figures, that is the way the child will try to behave towards others (often very inappropriate, coming from a child). But if you treat such a child with respect and gentle kindness, that is what they try to use in their own behaviour.

    It is difficult to treat a child with respect and gentleness, when they are standing there hands on hips screaming at you for being insolent to them. But as Dr Phil says, someone has to be the hero in the situation and frankly, I think it should be the adult/parent, not the (often socially inept) child.

    Anyway, welcome to the site. This is a friendly, welcoming and useful place. Do a sig when you can (to make it easier to keep us updated without getting typist cramp). Keep your names and location confidential so you can feel free to vent without risking breach of privacy. You need to be able to vent without fear of the person you're venting about tracking you to the site and reading your innermost thoughts!

  6. LittleDudesMom

    LittleDudesMom Well-Known Member Staff Member


    You've been give some good information to begin mulling over. I'm glad you have found your way here - you will find that you are not alone in dealing with a challenging child!

  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    DAndrews, hi there.
    My son was diagnosed with bipolar and put on heavy duty medications, and I knew he wasn't like other kids with bipolar. He didn't rage and he didn't seem that moody. He was just different, quirky, and a loner who sometimes seemed "out of it" and sometimes seemed very with it. We finally (age 11) took him to a neuropsychologist, a type of professional we had never heard of until a friend told us about it. He tested my son for ten hours. Before that, I was lucky if the psychiatrists looked at my son for more than ten minutes before pulling out the prescription pad. My son is adopted and his birthmother used drugs, so the psychiatrists all assumed he had to be either ADHD or bipolar. When my son came to us, at age two, he didn't talk, banged his head, tantrummed (as a toddler) and I thought "autism" but kept being told "no...he's too friendly...his eye contact is too good...blah, blah, blah"
    He was diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified (atypical autism) at 11. Since then, with school help and no medication, he has taken off and, at 15, is doing GREAT. This is four medication-free years now (all those medications had cognitively dulled him). He hasn't had any rages, and he is much better socially now that he is getting interventions at school. He even went to Homecoming.
    Go with your Mom Gut. See a neuropsychologist. There are a lot of Psychiatrists who really don't understand Aspergers or Pervasive Developmental Disorder (PDD)-not otherwise specified because it's a Neurological problem, not a psychiatric condition...and they are conditioned to look for "psychiatric" and to prescribe medications. Some kids really need Psychiatrists and medications, but I recommend a seperate, non-biased neuropsychologist evaluation before you go to another Psychiatrist. Then take it from there. His psychiatrist at age 11, when we decided to do the neuropsychologist evaluation, said, "He CAN'T be autistic. He can go from one room to another with raging." I couldn't believe that this doctor, not too young and with a great reputation, didn't know squat about either Pervasive Developmental Disorder (PDD)-not otherwise specified or Aspergers. I knew more than him. I think this lack of knowledge in many professionals is because Pervasive Developmental Disorder (PDD)-not otherwise specified and Aspergers have only been recognized for a bit over ten years. Before that, you were "ADHD" or "mentally ill" and it was just tough. I digree...
  8. dandrews

    dandrews Guest

    wow thanks for all the info.

    My daughter was first put on medications at 6 yrs old and has been changed from one set of medications to another so many times I can't even count.
    About seeing a specialist... we have medicaid and have to get refered by her pediatrician. Of course the doctor is just trying medications for one type of problem after another and says we will eventually hit the right mix. She doesn't see a need to refer her to someone else.

    She has an IEP at school that started 3 yrs ago when we moved to Texas. We used to live in California and there the schools all said we don't have the time or resources to deal with her, they put her in a desk in the back corner of the room and sent her home whenever she would not stay in her seat. Its much better since we moved to Texas tho. They had her in a class called Adjustive Behavior Unit. They counsel them on age appropriate behaviors, respecting other peoples space and things etc.
    She has a lot of problems with group activities. She works best by herself. Doesn't get along with anyone. Yet she is always trying so hard to make friends, she is a very close talker (although she will not keep eye contact with you while speaking to you or listening to you) she likes to hug and hang on people all the time. She is very smart and gets A's and B's when she is trying but a lot of the time she refuses to do her work. She gets distracted easily and always finds something she would rather do than her classwork. She always has her nose in a book but likes books that are for younger kids. She mixes and matches her clothes so she looks like a five yr old or a hippy. She constantly is making up make believe games and wants all the kids around her to play her pretend games with her and gets upset when they don't want to. On good days she sits in the classroom and does some of her work. Other days she walks around the classroom putting her hands in front of the other kids books so they can't read, yells in their faces, and shakes her fists at anyone who even looks at her. She has an obsession with food. She will eat 3 plates of food and whine, beg, cry, scream for more. We have to lock up all the snacks, sodas etc. or she gets up in the middle of the night and sneaks food and literally eats until she makes herself sick. She is not fat tho, she is the oposite, she is very skinny. Some days she does anything and everything she is asked to do with no questions asked, other days she argues with everyone and you can't get her to do anything and she will sit on the floor in the middle of her room for hours doing nothing. When she is frustrated or angry, she will bang her head on the wall, pull her hair out, bite herself, run around the room breaking things etc. I have to really watch her around her younger brothers because I never know when she will blow up on them because they don't want to play along with one of her games. She also is obsessed with running away. She has run away several times, she doesn't stay gone more than 1/2 a day tho. She gets scared or tired of being alone and comes home. She basically acts like most 6 or 7 yr olds act.

    When she was a baby she didn't like to be held and played with much she was always happier to lay or sit and play by herself. She did not like certain sounds, like vacuum cleaner, plastic bags, any kind of crinkly sound always uspet her very much. She seemed to out grow that around 6 or 7 yrs old. She never crawled went straight to walking or mabey I should say running everywhere. Was always climbing on everything. But she always seemed to understand things fine and she started talking etc. on time, if not a bit earlier than most kids. Used 3 word scentences by about 1 1/2. Was walking at 7 1/2 months. But never did well around other kids. She seems to get along ok with adults about 60% of the time but never can seem to get along with other kids.

    anyway I don't know if that helps any of you with an idea of what she is like. Thats what I can think of for now.

    My 10 yr old son is another story for another time. He hasn't been figured out yet either.
  9. Marguerite

    Marguerite Active Member

    Oh, she sounds so familiar! It really does sound very Aspie to me, but we can't diagnose on this site. Or any site, of course. You do need to get this assessed.

    If it's Asperger's, there is no medication that works FOR ASPERGER'S. However, because it's a syndrome, a constellation of problems which often get separate labels (what I call an alphabet soup of labels) sometimes some of the other problems CAN be treated (for example, anti-anxiety medications for anxiety and Obsessive Compulsive Disorder (OCD) behaviours) and not just with medications. You can also treat anxiety with cognitive behaviour therapy and relaxation techniques.

    Our kids are on medications but that's because there is an ADHD component to their presentation (which may or may not be the case with your daughter).

    There is a really good rule with medications - if you don't get an obvious, amazing improvement, then chances are the medications aren't worth the effort. But if you DO get a "Wow!" reaction to trying something, then chances are it's worth continuing with.

    Some good books (besides "The Explosive Child" by Ross Greene) - "Curious Incident of the Dog in the Night-Time" by Mark Haddon (a fictional novel written in the first person, the character has Asperger's Syndrome and the book gives marvellous insight as well as being an entertaining read) and "Thinking in Pictures" by Temple Grandin (a factual and informative account and support book by a woman with autism who is now an Associate Professor in Animal Behaviour at Colorado State U). Also "Son Rise" which was recommended to me by difficult child 3's school librarian.
    I think these books will help you where you are NOW, i terms of getting a good understanding of BOTH your kids and maybe some pointers on how to help them.

    A lot of labels given to our kids when they are very young, are subject to change. As the child gets older, sometimes a condition can become more apparent. A diagnosis is never written in stone. or shouldn't be.

    Do a sig when you can, it can help us a lot in trying to help. But avoid using your real names so you can maintain confidentiality.

  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Question: Are her make believe games rooted in TV shows she watches, books she reads (and may be obsessed with) or videogames? And is she very singleminded and rigid in her thinking? Does she talk AT people rather than TO them in a give-and-take way. I'm not sure, but I'm thinking she MAY have Aspergers Syndrome (these loner kids with poor social skills are also extremely smart and often get misdiagnosed as ADHD). If by chance she does have Aspergers, medications alone won't help. My own son isn't even on medication and does better without it, even though he is also distractable.
  11. Jena

    Jena New Member


    I just wanted to jump in and welcome you as well!! I'm sorry i'm late to this.

  12. trinityroyal

    trinityroyal Well-Known Member

    Hello dandrews,

    As Marg said, we're not able to diagnose, but GOLLY does your daughter ever sound Aspie.

    It's true that there are no medications specifically for Asperger's, but some of the related issues (ADHD, anxiety, etc.) may benefit from medical intervention.

    BUT...it's really important to get the correct diagnosis first, so that you know what you're dealing with. A lot of us have had great results with a neuropsychologist evaluation. If you live anywhere near a university hospital or teaching hospital, you might be able to find one there, or your doctor might be able to refer you to one.

    The testing is intense, and can highlight neurological issues that other types of tests can't.

    Good luck in finding the answers you need. In the meantime, take comfort in knowing that you're not alone.