New diagnosis Asbergers....Any advice or info would be appreciated! We are lost!

Discussion in 'General Parenting' started by LookingForAnswers, Jun 13, 2011.

  1. LookingForAnswers

    LookingForAnswers New Member

    So difficult child went to his 2nd appointment with the new psychiatrist and she confirmed that he has Aspergers and ADHD. She is not sure about what other disorders he has...possibly ODD, Depression, and Bipolar. She needs more time with him to determine that. We are pretty sure that he has ODD and Depression (he other psychiatrist diagnosis him with ODD, ADHD, Depression and Mood Disorder) but she is not sure about Bipolar. I personally don't think he has Bipolar but we will see. I went to this appointment pretty much expecting her to tell me that he has Aspergers but it still upset me more than I thought it would. Through the years I have often wondered if he had Asbergers but his other psychiatrist never suggested it...which I don't understand bc he has almost all the classic symptoms. A part of me is glad to finally know what we are dealing with but the other part is sad. We don't even know where to start. Well, we do sort-of...his new psychiatrist told us to make a list of expectations and then to come back to see her so we can break it down to items of 3 to start with so we don't cause so much distress on him. Makes sense....but she did say that it was gonna get worse before it would get better bc he will fight it. Becuase he is 15 and is set in his ways it will be difficut...she believes that he has a lot of "learned" behaviors that need correcting (I totally agree!). She said that we have got to establish a routine....that is gonna be tricky but we will figure it out. She said that difficult child doesn't even realize that something is wrong. She asked him in front of us about his friends and he said he has lots of them (he has 2!). He told her he has no idea why we take him to see her and the other psychiatrist! This will make it harder to help him get better bc he doesn't think that anything is wrong. She said that he will need intensive therapy. She gave us so much information at once....it's just hard to digest! If anyone can give me advice or info on Asbergers I would greatly appreciate it!!
     
  2. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there. Been there/done that with wrong diagnosis. Son was diagnosed as bipolar...I should have have gone with my "mom gut" and told psychiatrist "No, he does not." Actually, many Asperger kids have moodswings t hat are not bipolar. Be careful that you are POSITIVE your child has bipolar before you start a regime of uber-strong bipolar medications. I am so sorry I didn't question that more. My son has high functioning autism, not bipolar. He has been medication free for now seven years and has had NO moodswings. He had more on the medication, not to mention side effects. So my first bit of advice is to be careful. Some psychiatrists throw every diagnosis in the world out there. Aspergers can explain ADHD/ODD behaviors, moodswings, and not "understanding" life. He probably thinks a friend is somebody who says "hi" to him at school. My son was somewhat like that.

    My second bit of advice, and take it or leave it, is that interventions, such as social skills and life skills classes will probably help him a lot more than intensive therapy. My own son did not relate well to therapists and did much better with help for his social skills and life skills. He is eighteen and STILL needs help, but he's way far above where we ever thought he'd be. Do you know what the psychiatrist wants to accomplish with him? Be sure you're on the same page.

    Thirdly, all children on the spectrum are different. If you see something working SEIZE IT.

    Try not to worry and keep us posted. Lost of us have children on the autism spectrum so we understand. Hugs :)
     
  3. Marguerite

    Marguerite Active Member

    My older son difficult child 1 was 14 when he finally got the Asperger's diagnosis. It is spelled with a P not a B, which could help you find more accurate info online.

    difficult child 1 is turning out okay. He is married (27 now) and although he has no formal qualifications other than high school graduation, he is a hard worker and an honest man. He is loving, compassionate, a deep thinker and has a strong sense of morality. Vey loyal. These are all the qualities inherent in Asperger's.

    Asperger's is complex and the individual with it can have a wide range of capability. There is also a wide spread between different Aspies in terms of their prognosis. difficult child 1's best friend is also Aspie, but more withdrawn and dysfunctional. However, he has attached himself to difficult child 1 a lot and followed his example. I got them both into a TAFE course (that's our college) and got them both through it. Together they helped one another; individually they would have failed.

    They are still complex people and this is often misunderstood. If you can imagine what is is like to be born with this, grow up not knowing any other way to think or to be, but also realising more and more that you are different and that you have to try so very, very hard just to not fail - then there are the joys in their life, the things that they love, that make them happy. For difficult child 3, it is bubbles. And computer games. For difficult child 1 lately, it is fighting with a broadsword in medieval recreations. Or watching Star Wars. So they can swing from deep depression to euphoria WITH GOOD REASONS THAT MAKE SENSE TO THEM. And that is where bipolar can get added to their diagnosis inappropriately.

    I'm not saying it's not possible to also have bipolar, but the problem is, it is a label applied by a "normal" person, to someone who they may be misunderstanding. I know I have had doctors tell me I was suffering from depression - I had been struggling to get a diagnosis for my kids, at the same time my specialist was trying to get me into hospital for some testing and physical rehab work in the hydrotherapy pool. The hospital bed kept getting postponed, week after week. The day we saw the pediatrician with the kids - we walked out of there in shock, husband & I. We had with us difficult child 1, just diagnosed with Asperger's. difficult child 3, just diagnosed with autism. Both had also been diagnosed with ADHD - we already knew about this in difficult child 1. And our girl, easy child 2/difficult child 2 - she had a diagnosis of Asperger's traits, plus ADD inattentive type. You can only imagine how we felt. And before we had turned the corner on the way back to the car, the hospital rang. They had a bed for me, I had to go in immediately. So husband & I were separated just when we needed to debrief. He had to instantly become the stay at home parent (he had warned his boss that he would need to take compassionate leave at some unknown time in the future to cover my hospital stay) and I had to be the Warrior Mum from a distance, using the phone by my hospital bed to organise more testing, more therapy, more tutoring.
    I was seen that afternoon at the hospital after my arrival, but a psychiatry resident. He had a standard form which he filled in as he asked me questions about how I felt. How did I feel? Distraught, but numb. Lost. Confused. Angry - why me? I was still in shock from the recent events, when the shrink gave his verdict - dysthymia. he recommended medication. In vain did I explain that today was a bad day because of circumstances, that I would come out of my box fighting by the next day.

    Now when I look back, I understand why I was labelled as I was - it was how I seemed on assessment. Classic case. But the guy should have considered the extraordinary circumstances.

    It is natural to get depressed, even grief-stricken, from time to time. But at the moment you feel this deep sadness, your symptoms will be indistinguishable from someone who suffers form clinical depression. Your brain wave patterns will be identical. This is known, it has been measured and researched. But still doctors rush throuh a diagnosis and lump together those who have no reason for their mood swings, with those who do.

    Severe mood swings with no reason - time to consider bipolar. But mood swings when there IS a reason? NORMAL!

    We have a load of information for you, but rather than swamping you, it is better to answer your questions as they arise.

    For your son's behaviour problems - read "The Explosive Child" by Ross Greene. It will give you a different perspective on your son and make it easier for you both to work as a team. It really is brilliant - the doctor giving you a max of three things to come back with, fits in beautifully. But read the book, it will help you choose which three things.

    Other reading to perhaps help you get into your son's head - a fictional book, "The Curious Incident of the Dog in the Night-Time" by Mark Haddon. It is written form the point of view of a 15 yo with Asperger's. He is a fairly severe case. It is fiction, the author does not have Asperger's himself. I have another book I just acquired by the same author - very different. Save this one for when you are ready to pick up a fiction book again. it will also plug into your emotions at the moment, although the book has its humour as well as the pathos. And a happy ending.

    So - ask away. A lot of us here have been there done that.

    Marg
     
  4. keista

    keista New Member

    Even though you 'knew' that it really might be Asperger's, there was a small part of you hoping that it wasn't it. Personally I'd prefer my child to have Asperger's over Bipolar. In my personal experience I've seen more ppl with Asperger's be successful than with Bipolar. However, both have huge ranges of functionality/dysfunctionality, so someone else could have completely opposite experiences.

    When my son was first screened for Autism/Asperger's, I received a questionnaire from the school. I read through it, and immediately got on the phone with my BFF. We've known each other since birth because our parents were friends. I read her the questionaire, and the first words out of her mouth were, "Why is the school sending you stuff about your Dad? And how do they know him?" WOW! My Dad is an ASPIE! So many things suddenly made sense about him. Point is, he got through life without any assistance or accommodations. He was an electrical engineer who worked on components of the Space Shuttle and F14 Tomcats (you know, the planes Tom Cruise flew in "Top Gun") He's been out of work since 1986 and only hit full retirement age in 2000, yet managed somehow to stay financially stable. The further point is that Aspies have so many intrinsic positives to their personalities and diagnosis that if you focus on bringing those out, there is a good chance of a positive outcome.

    Yes, you need to grieve the loss of "normal", but you've been doing that for a while now. The difference now is that it has a name. BUT that name will help in ways you never dreamed possible.

    Learn as much as you can about Asperger's. While reading about other ppl's stories, you'll find yourself thinking back to this situation, or that situation, and seeing them through the knowledge of Asperger's. I can almost guarantee so many light-bulbs will be going off over your head that you'll be able to light a small town.


    As always, Marg is right on the money. I just had to add regarding:

    This is the reason the DSM has a time requirement to make the diagnosis 'official'. Aggressive doctors (and young interns) forget that part.
     
  5. Marguerite

    Marguerite Active Member

    To further add to that quote of mine - when someone has Asperger's, those mood swings will have a long-term history. So the time limit thing still doesn't prevent a possible misdx. A doctor observing apparent extreme mood swings form rage, to being happy - such as difficult child 3 getting angry at one of his siblings over having to put toys away in the doctor's waiting room (because the doctor is ready for us) then switching it off like a tap and the smiles coming out when he finds on the doctor's desk, the paperweight with liquid in it - a doctor who is not thinking deep enough will see a drastic mood swing that the doctor doesn't understand, therefore in the doctor's mind there is no reason for it. But from the child's point of view there IS a reason for it and therefore it is not a problem intrinsic to brain chemicals being out of whack.

    It is really important to get into your child's head. it greatly reduces the chances of a misdx.

    Marg
     
  6. LookingForAnswers

    LookingForAnswers New Member

    Thanks for the responses! There were really helpful! I totally get what you are saying about the mood swings happening for a reason. difficult child's old psychiatrist has been treating him for a few years for a mood disorder and I have never really understood the diagnosis. I don't see difficult child be overly happy 1 minute and sad the next.....he has never had a mania or manic episoe....he has had rages but they don't happen very often so I have never really thought that he has Bipolar. What I see is difficult child being very reactive to situations that he doesn't like.....he will get ****** off for a reason (or at least he thinks it's a reason to be angry!). Kiesta I feel like you I would rather him have Aspergers than Bipolar and I am waiting for the psychiatrist to take it off the table!! You were right about all light-bulbs going off in my head and me thinking back to situations. difficult child has always been very sensitive to sound and he has always rubbed his fingers and thumbs together and now he twirls his hair but I always thought that was just difficult child being difficult child…he has never had any friends (But he thinks he does. Right now he only has 2 and would swear he has a bunch.)….the looking around while you are talking to him (I always thought he just didn't care about what I was saying!)…..the extreme obsession with video games…..the inflexibility….the fact that his non-verbal IQ is below average….I could go on and on but I won't. What I am struggling with now is am I trying to connect dots that aren't there. How could she diagnosis him with it after only 2 visits. Are there tests he should be given?
     
    Last edited: Jun 14, 2011
  7. Marguerite

    Marguerite Active Member

    There is really no blood test or any other measurement that can tell you if the child has either ADHD or Asperger's. Often with ADHD the parent and the teacher will be given a questionnaire to fill out - the Connors Test. How that scores can give a clear indication. ALso with Asperger's (and related Autism Spectrum Disorders (ASD)) the doctor can do a Pervasive Developmental Disorder (PDD) series of questions on them, usually by asking you; asking the child; observing the child. You can do it informally yourself if you like. Go to www.childbrain.com and look for their Pervasive Developmental Disorder (PDD) questionnaire. You are not a professional, and doing the test remotely like this is not diagnostic, but it will give you insight into the diagnostic method in this case.

    I am now so familiar with Pervasive Developmental Disorder (PDD) that my kids reckon I see it under every rock. No, not really. But I do recognise it, often in undiagnosed people. Then I later find my suspicions were confirmed when that person gets diagnosed. Similarly, at family weddings I have people talking to me about their concerns for their kids (my nieces/nephews) and it has been interesting how many times I have said, "Yes, I think it is," or "No, I think you need to look for something else," and be proven right. It is not because I am especially clever or intuitive - just thoroughly over-exposed to it, thanks to my kids and their friends/classmates. difficult child 3 attends a special drama group for kids with learning problems and about half the kids have a diagnosis of Autism Spectrum Disorders (ASD) in some form. Comparing them to the rest, who have a range of other diagnoses, is part of my own experience. And over time, you do get to recognise it. And if I can recognise it this well, how much more skilled with a dedicated professional be?

    Marg
     
  8. LookingForAnswers

    LookingForAnswers New Member

    Thanks! I did go to that website and did the Pervasive Developmental Disorder (PDD) assessment. It said that he was Moderate Pervasive Developmental Disorder (PDD) (score was 110) so that makes me feel a little bit better about the diagnosis. I just don't want him to go another 7 years with the wrong diagnosis. I just want to be sure that it is the right diagnosis this time. It really makes me so mad that his old psychiatrist missed this for 7 years! How did he miss this? It seems like he was only masking the symptoms with all the medications and not treating the disorder. He told me at one point that he didn't know what to do next...that difficult child was very unpredictable. UMMMMMM......you think that was bc he didn't know what difficult child's real diagnosis was. You would think that at some point he would have said "Maybe I need to relook at this one....maybe something else is going on." But he didn't. I realize now that he never even asked us the questions that his new psychiatrist asked us. Maybe if he did he would have realized that he was treating difficult child for the wrong disorders. It really infuriates me.....I trusted him!
     
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Haha, marg. I know what you mean by having a feel for Autism Spectrum Disorders (ASD). I can usually spot it. Often the parent will come back and eventually have the diagnosis. When you have to be observant about Autism Spectrum Disorders (ASD), it becomes second nature.

    Bipolar is so often dxd. WITH Autism Spectrum Disorders (ASD) and so often it's just a part of having Autism Spectrum Disorders (ASD). These kids do have a low frustration level and may seem moody (and sometimes are). But bipolar and mood disorders are a whole different ball of wax.

    I wonder how many kids who are diagnosed with childhood bipolar actually grow up to have manic and depressive episodes. I often think that diagnosis. is thrown around too much. Of course JMO.
     
  10. jennd23

    jennd23 New Member

    After all the reading I've done on Autism Spectrum Disorders (ASD) I've often wondered if I might even be an undiagnosed aspie LOL
     
  11. keista

    keista New Member

    It is quite possible. I know I'm not, but I am certainly 'borderline' Could be partly genetics, but also the fact that I was raised by a single Aspie Dad.
     
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