And the verdict is....*drum roll*

Discussion in 'General Parenting' started by HaoZi, Apr 13, 2011.

  1. HaoZi

    HaoZi Guest

    That both Kiddo and I are autistic (Aspies), but only she gets it in writing. Based on how the next version of DSM modifications will be (they're doing away with Asperger's Disorder under a more general Autism Spectrum Disorders (ASD) heading) she is AD with dysthymic disorder, early onset, and that he would not list her Obsessive Compulsive Disorder (OCD) separately right now but as a manifestation of AD.
    He says he doesn't see her being bi-polar, but because the medications that do help are for bi-polar that diagnosis is likely for insurance company approval, and it would be best right now to let it be.
  2. Marguerite

    Marguerite Active Member

    OK, I have a few problems with this.

    First, you do not get a diagnosis. I presume because you are an adult. Well, we have a friend here who has recently been diagnosed Aspie, as an adult. We've suspected it for years, he is a classic.

    Second, the "early onset dysthymia" - it goes hand in hand with trying to grow up with something like Asperger's. I also got diagnosed with dysthymia in 1997. It was a few days after we had seen the pediatrician for the first time, the one who that day looked at all the repots we had gathered on all the kids and said, "difficult child 3 has autism. difficult child 1 has Asperger's Syndrome. easy child 2/difficult child 2 has Asperger's traits but not enough for a diagnosis. All three have ADHD on top of it all." Then we walked out of there, in shock, and had not even turned the corner when my mobile phone rang - my specialist saying, "You are supposed to be in hospital, a bed is waiting for you. We have tests to run."
    So while husband & I were trying to come to terms with the various diagnoses, we were separated. He had to be house parent, taking time off work, while I was stuck in hospital for three weeks. When the psychiatrist assessed me the day after I was admitted, he commented that my mood was down and that this meant a diagnosis of dysthymia. I got very angry with him - I had every reason to be feeling down! The hospital psychologist who I also knew, came in to visit me while I was still seething. She supported me over this, I never had to see that idiot shrink again. But I suspect the label is still in my file.

    So when there is a valid reason for some level of depression or mood lowering, I think it should be considered first before someone hands out a psychiatric label which implies the condition is existing purely in isolation, with no cause. Because a cause can be managed.

    If you know there are a number of possible reasons for whatever is troubling your child, it is easier to do something about it. But labels can stifle us, cramp our style and make us think, "This is how it is."

    I can look back on my childhood and freely admit I was depressed and anxious. I can also find reasons. If I had been assessed for these things, they would have been found. In tis day and age, I would probably be medicated. But back then - life was hard for me, in a lot of little ways. I was not coping too well. But I learned to cope and it helps me now. However, I wish I had not had to endure it.

    But there were always reasons. it is hard to not feel anxious when you know, and are told in many little ways every day, that your mother could die at any minute and if she gets too stressed it can cause it. No wonder I was anxious, subservient, depressed. Always different, so school bullying was also an issue. No skills to handle it because my upbringing was so different and so conservative.

    It taught me a lot about what NOT to do with my own kids.

    Don't get me wrong. I loved my mother. It was not her fault that I was anxious about her, she never used that sort of emotional blackmail on me. It was the other adults in my life, making well-intentioned but damaging remarks. And as it happened, my mother lived to see difficult child 3. She never knew he was autistic, but she did see the early signs of problems. I know she would have been supportive, she was always a very wise woman.

    So be careful of the labels, and use them administratively, but don't lock yourselves into them. If you know what I mean. Life has far more opportunities for each of us than the labels often allow us to be.

  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Did she take the ADOS test? My son had three tests plus massive observation at his affect, conversational ability and other things before he got the diagnosis. It was an exhaustive testing process, but at least we know what's going on. Did he also test YOU? If so, how did he come up with the diagnosis? I'm just curious :)
  4. HaoZi

    HaoZi Guest

    Yes, he said that, and there's also the whole thing with her father not being around and that adds to her feeling rejected and being depressed.

    MWM, here's what he used (as listed in the report):
    Review of records (psychiatric hospital, the school tests like the Vineland, parent input report from here, etc)
    Personality Inventory for Children - Behavioral Summary
    Gilliam's Asperger's Disorder Scale
    Clinical History Review
    Millon Pre-Adolescent Clinical Inventory
    House-Tree-Person Projective Drawings
    Wagner Hand Tests

    So I have a 7 page report on his findings on her. He put in there that in the DSM-IV this would land her an Asperger's diagnosis, but also wrote out that he was writing it as Autism Spectrum Disorders (ASD) to be in line with the upcoming DSM-V so that she would not need to be re-diagnosed when they remove Asperger's. He also gave me some names of other doctors if I want to look into testing her level of Sensory Integration Disorder (SID).

    As for me, it's that A) Kiddo is mini-me with less supports than I had, B) self-assessment tests, like Attwoods and several others all land me more squarely in the Aspie area than her, and C) from talking to me and knowing autism pretty well himself. Nothing in writing would do anything for me at my age, since I am functioning independently and have ways to cope. Putting it in writing could also hurt me if there's ever a custody battle or when getting insurance, too.
  5. Marguerite

    Marguerite Active Member

    Good point about the custody thing. It shouldn't matter, but it often does. Sadly.

    At least you know what she's going through, and you can tell her that you've been where she is. That should help her feel less alone.

  6. HaoZi

    HaoZi Guest

    Yeah, that was the only reason I wanted a diagnosis on me, no matter how certain I was already, was so that she could see that she's not alone, that if I could do it, then she'll be able to do it, too, and that I really do know what it's like.
  7. Marguerite

    Marguerite Active Member

    difficult child 3 has been desperate to see husband assessed for possible Asperger's diagnosis. he says it will help understand him better.

    So it can go both ways.

  8. TerryJ2

    TerryJ2 Well-Known Member

    Well, heck, HaoZi, I'm not sure if I should say "congratulations," or "I'm sorry" or both! Because it is SO hard to get a diagnosis, and a good one. And it does help when you have that little piece of paper to show to people who need it ... school systems, whatever.

    Good point about not putting it in writing for you in regard to a possible custody battle. Sheesh, to have to think of those things!

    And interesting that the dr is configuring it best for the new DSM-V.
  9. HaoZi

    HaoZi Guest

    Yes, he knows it's been a major battle to get Kiddo tested for anything, so he covered the bases on that one to ensure that someone won't come back later and say "That's now a null diagnosis, it's no good." He thinks her IEP will need tweaking and seems to know how SDs can be about such things.
  10. Marguerite

    Marguerite Active Member

    My view - congratulations. You have confirmation, and in our family Pervasive Developmental Disorder (PDD) is seen as a bonus, a blessing. It brings difficulties, but those we already knew about. But it also brings unexpected gifts which bear rich fruit through life.

    When I was a child and read a Readers Digest article on autism, it terrified me. It was the one disability I KNEW I would never cope with, if one of my children had autism. And now? I am grateful I have been given the opportunity to learn.

  11. HaoZi

    HaoZi Guest

    I'm still trying to fully digest it. It's one thing to know it in your heart and head, it's another thing to have a report in hand. We see her therapist today, and I'll be taking it to the SpEd office and her school for them to make copies as well and hopefully get some suggestions on where to go now to get some extra help for her.
  12. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi again :)
    Sounds like he got a good evaluation. They gave my son THREE autism tests, but the ADOS is pretty accurate.

    Isn't it funny how often we, the Warrior Moms who HAVE to be rocks, also have diagnosis? I think a lot is inherited. My one biological son got walloped with everything I have. Strangely, though, because I have problems (and I think the problems gave me a huge extra dose of compassion for others) I am also in my opinion a very good mother to my son on the autism spectrum. I think I have a lot more patience than others might have. Then again I feel that God (as I believe Him to be) blessed us with one another on purpose.

    I wish you both luck. School can be a challenge, but keep after them :)
  13. Malika

    Malika Well-Known Member

    HaoZi, if it does not seem insensitive and if you do not mind answering, can I ask how autism manifests for you in your life? I have such a crude understanding of autism, I think, along with most people... visions of children sitting silently rocking themselves, quite unable to communicate with their surroundings... obviously this is a caricature. I would like to understand more. Someone said in one post that ADHD is considered by some as a form of autism and actually this makes sense to me... I also feel that I have met many people who have some degree of autism but completely undiagnosed!
  14. Marguerite

    Marguerite Active Member

    Malika, I can perhaps also answer that as I have adults in my family who are on the spectrum.

    The vision of the child rocking in the corner was the one that I knew from my childhood reading, and the one that terrified me. But it is far less common than you would think, and also is not necessarily a static situation. All children grow and change, learning as they go. Autistic children are certainly no exception.

    The old fallacies were that autistic children choose to secede from the world, almost as if they disapprove of it. They were claimed to be emotionally barren, have no sense of connection with anybody and no desire to connect. I have learned just how wrong this is - autistics feel emotion very keenly, often to a painful extent. But they don't always display it in ways we recognise. The 'flat affect' or lack of expression in voice and face, is fairly common especially in younger autistics. This I suspect is what has misled people in the past to think that these people feel nothing. Such a hurtful assumption!

    Autism is a disorder of social skills and communication.

    My observations - in my family those with autism tend to be very law-abiding, almost to a fault. How can obeying the law be a fault? When you don't fight for your rights. For example, husband got a speeding ticket and his first reaction was, "I didn't think I was going that fast, but the camera said I was so I'll just pay the fine."
    I have gone over it with him and pointed out that I happened to be watching the speedo at that point, as we both knew that it was a speed trap, and I know that he did not go over the limit. And certainly not by the amount the authorities claimed. husband has taken a lot of convincing that the camera could be wrong. We've since been independently told that this particular speed camera is often wrong. We also went over it and realised - at the time the camera said we were speeding, we were driving uphill, heavily laden, and had only just turned onto the highway so would not have been up to speed.
    But husband's initial reaction is to believe what authorities have told him and to act accordingly.

    Hypothetical example - we are at a street vendor's stall and they are giving away free samples. There is a sign (or someone has said) "Only one per person." Even if other people are stuffing their faces, husband, difficult child 1 and difficult child 3 will only take one. In fact, they may even try to compensate for other people taking too much, by taking just one sample and sharing it around the family, so six of us get a smaller taste but only one sample goes around six.

    How did this come about, form the earlier days of a screaming kid who could not be pacified and who could not understand how other people felt? It happened because in each case, a lot of work has gone in to trying to understand how society works. And contrary to what people used to think, much of tat work is done by the autistic individual themselves. But they need help, or they can sometimes feel so discouraged that they want to give up.

    There can be problems if a law-abiding autistic person gets in with the wrong crowd. They want to please others. they want to do what the rules say. As a result, they are at risk of being easily led and manipulated. difficult child 1's last job was exploitative; he was at the end working without any pay, even though his boss was being given a government allowance to financially support difficult child 1's apprenticeship. The boss had not filled in the paperwork for the apprenticeship to continue, either. difficult child 1 stuck it out for several months before his friends and his wife convinced him to walk away.

    The Sixth Sense program is worth looking up. I was privileged to be present when it was presented to difficult child 3's class when he was 8. it was a way of explaining to kids about autism. difficult child 3 needed to understand as well. The point made - all our senses are what we are born with. We help people who for whatever reason, are having difficulties with any of the senses. If you are deficient, you need to find other ways of doing things. The sixth sense is the social sense and the program explores the sort of problems a person has, when they lack the social sense to any degree. And it is often a matter of degree.

    Temple Grandin wrote a book called "An Anthropologist on Mars" because she said that is how you feel - as if you are on the outside looking in; you don't belong but want to, so you study human behaviour in order to best imitate it and blend in. As you get older, you get more skilled. I did note that difficult child 1 had an extreme fascination for animal behaviour; he studied birds especially. We have lots of wild parrots in our backyard and difficult child 1 would feed the white cockatoos (much to the annoyance of our neighbours!) and studied them closely. When we had to stop feeding the cockatoos, difficult child 1 started watching the Rainbow Lorikeets. By this time he was doing volunteer work at he local zoo and would often try to imitate the bird sounds. That is when his autism became both a blessing and a curse - his intense concentration meant he could observe fine detail and imitate it fast. But his Obsessive Compulsive Disorder (OCD) (part of the autism) meant he couldn't STOP! So for months, he went around making noises like a male emu's mating call, and complaining that he couldn't stop. It became a tic.

    Tics and stimming - the world can be a confusing noisy upsetting place, especially for the younger autistics. Some repetitive actions or sights or textures can be reliably soothing. The hand flapping, for example (they don't all do it) is thought to actually soothe the brain, to calm them down. It's a flickering effect of light through the spread fingers that is thought to do it. But difficult child 3 never flapped his hands. Instead, he discovered (at only a week old) that looking at the flicker of light through the trees would work for him. We noted his fascination with trees form his first exposure. It got so every afternoon I had to take him for a short walk and he would turn his head to look at the setting sun through the trees. I had to be carrying him, not have him in the stroller. I found he wanted me to face one way, not another. Fourth baby, so I was used to 'reading' what a baby wanted. He was always very sure of what he wanted, from his first days even while we were still in hospital. What he wanted was odd indeed - double feeds. The nurses couldn't believe it, a newborn who would stay awake for two hours, have two feeds in that time, then sleep for six hours! At three days old!

    You do well (superficially) with autistic kids, if you give them exactly hat they want. But they need to learn to be adaptable, and giving them only what they want does not challenge them. So you learn, as a parent, to walk a fine line between challenge, and security/sameness.

    Temple Grandin has described autism as "an overdose of genius". She has said that autistics have in large measure, what in small measure would produce genius. There does seem to be a correlation between high IQ in the family somewhere, and autism. And how often have we known really bright people who were just a bit off centre? I used to work in a university, and I tell you that a lot of my colleagues were nuts or eccentric in some way. One professor screamed at me for daring to send him a memo instead of a letter. he actually rang my mentor (a more senior professor) at 3 am to scream at him about me too. But the man was a brilliant, entertaining lecturer on his pet topics. I developed a grudging respect for his brilliance when I studied his course. His boss, my mentor, was also eccentric - he loved Latin, to a ridiculous extent. I found myself needing to bone up on Latin and the classics in order to be able to understand a lot of the references. I used the word "decimated" once to my mentor and found myself being corrected in minute detail and told exactly what the word means and why. The modern usage is different. I won't go into it now. by the way, husband also could lecture anybody on the origin and meaning of the word "decimated". Maybe he and my old professor read the same classics! They would have got along brilliantly.

    Universities are like a refuge for Aspies and high-functioning autistics. When your colleagues are eccentric, you are more understanding and they in turn are often more accepting of others' differences. But what constitutes "high-functioning"? Temple Grandin, as a child, would not have been described as high functioning. I have been told that if someone is verbal, they are high-functioning. But difficult child 3 was non-verbal and still had significant language delay when he started school at age 5, yet he could easily read the class student list aloud. He was often asked to read the roll. He could fix the class computer. He was learning to follow verbal instructions, but some concepts were still beyond him (such as "why" and "how").

    We were given pessimistic forecasts for both our boys, but both have surpassed expectations. Who knows what an individual can achieve?

    There have been times when my kids behaved in fairly typical autistic fashion. A casual observer might have dismissed them at that stage. An example I often give, is of the first run I gave to our new front-loader washing machine. We had only ever had a top loader before. The new machine arrived, we unpacked it ,set it up and I got some washing going. Then an hour later (the cycle is long - two hours!) I couldn't find the boys. They were in the laundry, sitting in front of the washing machine, heads tilting this way and that in time with the clothes in the little window. difficult child 1 said, without changing what he was doing or even looking up, "I don't know why, but I find this strangely compelling."

    They then got the empty box, cut a small window in the side (leaving the cardboard there so the window could be closed like shutters), filled it with cushions, climbed in and played their computer games, peering at the TV monitor through the little window. Later difficult child 1 shut the window, took a torch and a book in there with him, closed the top of the box after him and read the book by torchlight.

    I let them do this - it is pat of them exploring their own senses and interests. I also hung a cargo net in the tree outside, the boys used to wrap themselves in the cargo net but till feel free, hanging out in the open. A feeling of being confined and held, but also free. easy child 2/difficult child 2 bought herself some reproduction corsets. Industrial strength "Gone With the Wind" type. She said it's like wearing a hug. I let her wear them but told her she must only lace herself in, not get someone else to. That way there would be a limit on how tightly laced she was. She wore her corsets to work under her uniform. her job required some lifting, bending and load carrying and she did it all with grace and poise, because she was strapped in rigidly and could not bend at the waist. She ensured her wedding dress included a heavily boned corset. Interestingly, difficult child 1's wife, daughter in law, also had a corset custom-made for her wedding dress. I suspect there is some Aspie there also. I'm convinced daughter in law's mother is full-blown Aspie. I love her to pieces but she is a difficult woman because her rules have to be the ones everyone follows. She was never taught how to compromise with other people.

    So there are variations on a theme. But what I see in the adults - they obey laws, as they understand those laws to be. Social laws as much as legal ones. They often learn their own limitations and set their own limits socially, accordingly. Our recently diagnosed friend has a phobia of hearing people slurp their coffee, so if he and I are talking while I make coffee, he will suddenly walk away as I lift the cup to my lips. I have learned to respect this in him and give him space. He has now extended this to not being able to stand listening to people eat or drink. I gather at home he either eats separately, or at the other end of the table from his family. He has other eccentricities, but he's a lovely loving, kind man who you could always rely on. He and husband are good friends. Funny about that... not. Because Aspies tend to 'find' one another and find in each other a kindred spirit. difficult child 1 said about his best friend from school, "I obsess to him about birds, he obsesses to me about reptiles, neither of us listens and we get on great!" Friend was best man at difficult child 1's wedding, and now difficult child 1 is best man at his friend's upcoming wedding. I never thought either of them would find love like this but I am so glad they did. The couples are best friends despite having some big differences in belief systems. difficult child 1 and daughter in law are very pentecostal; best friend and fiancee are atheist. In fact, fiancee is Jewish-born and currently Wiccan/pagan in practice. And yet - no conflict between any of them.

    I hope this can help give a little more surprising background to life with autism.

  15. Jena

    Jena New Member


    i'm sorry im late to this. ni'm so glad you finally got a diagnosis. i know it's one of those glad i finally got it yet wow moments. to know it in your heart and head and see it on paper two different things.

    youve done a great job pushing for her advocating etc. you really did. and with minimal complaining i might add lol :)

    it's good you got this it'll help you help her better now.........take your time to digest it.

  16. HaoZi

    HaoZi Guest

    I thought all kids had fun playing with the boxes. I don't recall what we got, just that the box was HUGE and I played with/in it like that until my parents finally tossed it.

    Anyway... I'm not entirely certain how it manifests in my life. This is rather new to me as well, and I think my Dad is having an even more difficult time digesting it. I was always a picky eater, quirky, had problems socializing - things that are also very common in gifted kids, so it's always been presumed that was why. In retrospect I'm really wondering how close Aspie and gifted are. It wasn't until high school that I truly understood that most other people don't experience colors or emotions as temperatures, textures, flavors, scents. When I say "A situation doesn't taste/smell right to me," I mean it in a very literal way, because that's how I perceive it (also seen in gifted kids). If I say a perfume smells cold or hot, hard or soft, the same thing goes. All of it could be explained by the fact that I am gifted and have what's known as a super-sensitive nervous system. It can also be explained by Aspergers/Autism Spectrum Disorders (ASD). A good percentage of the gifted kids I knew in school would also fall into these categories one way or another, and most of us were poor at socializing.
    If I don't have a "learned response" to a situation, I tend to either freeze up or else say the absolutely wrong thing possible without realizing it until it's too late. I also tend to spend a lot of time in "Fantasyland" aka daydreaming.

    In my daughter, I'll quote a small part of her report:
    "[Kiddo] appears much less willing than most children to process emotional stimulation. Because of her aversion to becoming engaged in affectively charged situations, she is at risk for being socially and emotionally withdrawn. Reluctance to process affect does not preclude a child's being interested in and capable of forming attachments to other people. However, the emergence of strong feelings often leads children like her to break off an interpersonal interaction, and their aversion to emotionality may limit their social attractiveness. This finding is of particular concern in a person her age, because it suggests that she be avoiding or approaching with excessive caution the kinds of everyday interactions that are necessary for normative development in young people.

    She shows an inconsistent and potentially maladaptive style of experiencing and expressing affect in which, at some times, she exerts more stringent control over her feelings than most young people this age and, at other times, she vents unmodulated affect (i.e. emotional outbursts) of considerable intensity. As a consequence, she may vacillate between periods of emotional calm, in which she appears more capable than her peers of showing stable and deeply felt emotions, and periods of emotional storm, in which she vents intense affect with little effort at self-restraint."

    "Unmodulated affect of considerable intensity".... that's the nicest phrase I've ever heard for major temper tantrums, lol.