How do I know?

Discussion in 'General Parenting' started by amy4129, Feb 19, 2007.

  1. amy4129

    amy4129 New Member

    Well I brought up the aspergers question with the psychiatrist at the medcheck appointment for the boys. He ask me to document why I thought this and bring examples to the evaluation appointment in the next month.
    My question is what would be the best way to do this that would make sense.
    Ideas please
  2. Janna

    Janna New Member

    Well, Amy, I guess my first question is, why are you thinking Aspie?

    If you see certain AS traits in the boys that you think are truly Autistic, I would start by just keeping a tablet, journaled, daily.

    I don't know the differences in Aspie and Pervasive Developmental Disorder (PDD)-not otherwise specified. I will admit, with much shame, that although Dylan is on the spectrum with the Pervasive Developmental Disorder (PDD)-not otherwise specified, I really don't know much about the full blown spectrum.

    With that being said, Dylan's Pervasive Developmental Disorder (PDD) traits were pretty easy to recognize. Lack of social skills. Speech delays. Not wanting to play with others. Inappropriate play with others. He did, at one time, have odd obsessions, like "spinning" - for example, taking a CD, and "spinning" it, over and over, he'd do this for hours. Another weird obsession, playing with tires (real tires on real trucks, want to talk frustrating?).

    So, maybe whatever differences you see in the boys that are Autism specific is what your psychiatrist wants to know, and how often? That's what I'd document.

  3. TerryJ2

    TerryJ2 Well-Known Member

    I hope I have some suggestions. We're in a similar situation. I've got an appointment for my difficult child in April. I'm going to bring his psychiatric and education evaluations, which show that he is 1) good at memorizing facts and 2) not good at overall comprehension, 3) 2 gr levels ahead at politics and social info (go figure!), but 4) 3 gr levels behind at manual dexterity, etc. I will also 5)bring along tests from Sylvan, that show how he has caught up and where he is still lacking. I will also 6) bring along a copy of the ltr from the psychiatric that suggests to the pediatrician that we try medications for his ADHD symptoms. I will bring along a copy of the neurofeeback test that shows difficult child is only using his frontal lobes and the right half of his brain (based on electrical output). I will also have some sort of documentation about his rages, which match the rage cycles in several of the Asperberger's books I have. I will also interview with-the neuropsychologist and tell him about the meltdowns in loud places, such as the Rainforest Cafe'.
    Quite frankly, a lot of the interview is just that--an interview.
    If I really want to, I can paint the neuropsychologist into a corner... but that's not what I want to do. I want to provide him with-info that will help him discern whether my difficult child really has Asperberger's. It's going to be very difficult because we've worked so hard with-him, and he's made so much progress.
    Some days I want the diag and some days I don't.
    I hope that helps.
  4. amy4129

    amy4129 New Member

    From what I've read and learned from Mom's here, AS, as I see it....
    1. no speech delays
    2.lack of eye contact
    3.lack of peer interactions
    4. social issues
    5. normal to high intelligence
    6. fixated on certain issues- like animals (meercats, for corey)
    7. sensory issues
    8. difficulty with reading nonverbal cues
    I hope I have this right
  5. smallworld

    smallworld Moderator

    Amy, I would recommend a neuropsychological evaluation for the diagnosis of Autistic Spectrum Disorders. If that is not possible, I would seek out a behavioral/developmental pediatrician or an autism clinic at a university or children's hosptial. Unfortunately, psychiatrists sometimes miss Autism Spectrum Disorders (ASD).
  6. amy4129

    amy4129 New Member

    The psychiatrist is vwry willing to listen and has always been there for us. He just wants more onfo from me. That's what I took from his request. I haven't found neuro psychiatric here in pgh ...if anyone knows one. Please let me know. I'd rather not deal with the residents at the childrens hospital,been there done that.
  7. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Amy, I agree with smallmom on the neuropsychologist and that high functioning Autism Spectrum Disorders (ASD) is often misdiagnosed as other things. Your list of AS traits is right on the money. AS is the only Pervasive Developmental Disorder (PDD) that doesn't include a speech delay and the kids are from average intelligence to brilliant, although ALL have serious social deficits and trouble with "getting it" (if you have an Aspie you know what that means). My friend has a 29 year old Aspie son with an IQ of 160 and he has yet to be able to keep even a menial job. He has the academic skills, but is so out of the social norms that he keeps getting fired, and is on Disability. He's married, but they both live with my friend, and his wife is so fed up she's ready to leave him. He has no common sense, but can speak three languages fluently and, when you talk to him, you can tell he's a genuis. Kids with Pervasive Developmental Disorder (PDD)-not otherwise specified, which includes a speech delay, tend to be more social, although they have social deficits too. Also, some Pervasive Developmental Disorder (PDD)-not otherwise specified kids don't have an average IQ. Yet both can make big gains with Autism Spectrum Disorders (ASD) interventions. I wouldn't try a pediatrician, regular psycologist, or even a Psychiatrist to diagnose Autism Spectrum Disorders (ASD). It is NOT a psychiatric disorders and many psychiatrists don't know much about it (even though they often profess that they do). We had a really bad experience with a psychiatrist who misdiagnosed my son with bipolar! What a mess.
  8. smallworld

    smallworld Moderator

    Amy, we have 3 wonderful psychiatrists for 3 kids, but I still wouldn't trust them to diagnosis Autism Spectrum Disorders (ASD) -- it's not their specialty. You might want to ask the psychiatrist for a referral to a neuropsychologist in town. I'm sure he can point you in the right direction. He will not be insulted; psychiatrists rely on neuropsychs all the time for intensive testing that they themselves aren't trained to do.
  9. tiredmommy

    tiredmommy Site Moderator

    I think being objective is your best bet. Have you done a parent report? Diagnosing these kids is kinda like the blind and the elephant, you want to make sure the whole child and history is taken into account rather than keying in on one or two possibilities.
    Here's some info on the parable:
  10. amy4129

    amy4129 New Member

    Can you all add to my list? I know the diagnosis varies by kiddo but I'm looking for general things.
  11. smallworld

    smallworld Moderator

    TM, that's why neuropsychologist testing is so helpful -- it does focus on the whole child and his/her cognitive and psychological functioning. We gained a tremendous amount of info on both our difficult children, even though we were already fairly certain of the diagnosis. The neuropsychologist testing has guided medication, therapeutic, school-based and other outside professional interventions.
  12. tiredmommy

    tiredmommy Site Moderator

    smallworld- I understand why neuropsychologist testing can be so helpful.
  13. amy4129

    amy4129 New Member

    Thanks guys...I don't care what the diagnosis is as long as it is correct. I don't feel that ADHD/ Odd is the sole player here. As I read and learn more I can ask better questions which is what I did.
    The psychiatrist knows I'm a nurse with a psychiatric background- granted in Seniors but I think he likes to make me think and he likes teaching.
    When I said about AS he said why not Pervasive Developmental Disorder (PDD) I said because there was no speech delay. He said "ok".
    Then he asked me come up with why I was thinking AS.
    That is how we got to this point.
  14. dreamer

    dreamer New Member

    I am curious about something. I keep reading everyone referring people to neuropsychs...BUT my husband has had 4 full blown many day neuropsychologist evaluations done over the eyars, my oldest child has had 2 my son has had 2 and I have had 2.
    NOT a single one EVER put ANY diagnosis of anythinig on their evaluation. Every single one of them referred us to psychiatrists, psychdocs, and neuros to have further testing.and they never did even give a "rule in" or "rule out"
    We have been to many diff facilities for these neuropsychologist evaluations, no 2 were done at the same facility, even.
    I can say all our neuros seemed to think ADD, ADHD, and bipolar were "stupid" diagnosis'es in the kids....the psychiatrist thought "atypical seizures" was a strange diagnosis all around.....and the pediatrician kept missing EVERYTHING- and shrugging later after other docs did make various assorted diagnosis'es.

    The sensory integration tester for my son refused to even bother with a report after she did testing on my son, becuz she felt he should be on ADD medications, so she said since he was NOT on ADD medications, she thought anything she might have for results would be useless????? The sensory integration testing on oldest difficult child was not interpreted becuz the tester felt my dtr was "too old" to be Sensory Integration Disorder (SID) tested???? (I knew better becuz we Sensory Integration Disorder (SID) test geriatrics at the nursing home)

    Truth is I get more and more frustrated instead of less frustrated the more docs and professionals we consult with.
    ANd only 2 docs ever really did anything concrete....our 1 neuro at one teaching hospital and a geneticist at a childrens hospital.
  15. TexasTornado

    TexasTornado New Member

    Hi Amy-are you still looking for things to write down on your sheet?
    *social-pragmatics, how he "talks to you" instead of with you, eye contact, facial gestures, body language,no reciprical conversations-only on his topics etc, not getting jokes, or puns etc
    *lining up toys, playing in a different way with his toys, interests in different things-torandoes, pipes etc-LOLOLOL
    *sensory things-seeking pressure, food sensitivities, smelling things,stimming-humming, etc, spinning, walking on toes when little, taking wheels off of EVERY car toy;)

    These are just a couple of things that are popping into my mind-my son has might be a bit dif with Aspie kids, but gen the same issues, except the speech and IQ etc.
  16. Marguerite

    Marguerite Active Member

    How did he score on the online Pervasive Developmental Disorder (PDD) questionnaire? Taking the printout from that to the psychiatrist could be a good start. it can also give you some ideas of the things to list, that are still an issue. When we live with kids like this it's hard to keep in mind what is normal and what isn't. We lose our frame of reference.

    From our experience - you get a diagnosis wherever you can. You can confirm it later at your leisure because you will already have the ammunition you need to put extra services in place. For us - it can take ages to find someone prepared and qualified to make the assessment, and often it takes a series of different experts each working within their specialty. You may be able to track down a multidisciplinary facility which as always good for a diagnosis if you haven't already got one; if you have, it's good for double-checking it. But if you can get a diagnosis in the meantime from whoever is prepared to go out ono a limb then that's great. Much better than nothing.

  17. Janna

    Janna New Member

    Yeah, did you do the Pervasive Developmental Disorder (PDD) questionnaire? I was wondering that too.

    I didn't have good luck with the neuropsychologist we found. They're out by Fort Indiantown Gap, if you know where that is, Amy.

    He grossly misrepresented Dylan, although did give us the Pervasive Developmental Disorder (PDD)-not otherwise specified diagnosis (which we already had anyway). He wasn't anything to write home about. So, my neuropsychologist opinion isn't that great, and in all honesty, I know a few members here found good ones, but I don't think the good ones, the ones that have Autism specific information, are local to us. Sorry.

    I would read up more about AS before making anything firm, and I would still keep the daily journals. The thing that you are going to find with the Autism is, that no two kids are the same. It doesn't matter if it's Pervasive Developmental Disorder (PDD)-not otherwise specified, Asbergers or Autism Spectrum Disorders (ASD). No two.

    I have been doing tons of reading on Autism stuff lately, because Dylan's on the spectrum. The spectrum is so wide and immense, it's no wonder doctors cannot see it in some kids quickly.

    The BiPolar (BP) was easy. Autism isn't.

  18. DammitJanet

    DammitJanet Well-Known Member Staff Member

    I found this interesting piece of work describing all the forms of autistic spectrum disorders and verbal communication disorders. It is quite extensive.

    The Skills Involved in Communication

    In order for us to effectively communicate, we need skill in multiple areas, including (A) verbal and (B) non-verbal arenas.
    (A) Verbal/Spoken Communication Skills (may or may not be affected in Autism Spectrum Disorders (ASD))
    bullet Semantic language: The ability to use and understand words, phrases and sentences; including abstract concepts and idioms. Aspects of semantic language include:
    bullet Receptive verbal language: The ability to understand spoken words and ideas.
    bullet Central Auditory Processing (CAP): A mixed group of abilities needed to process and derive meaning from sounds and words; including the abilities to distinguish between similar sounds, and to pick out the main voice from background. In short,“what we do with what we hear.”
    bullet Expressive verbal language: The ability to express our ideas with spoken words.
    bullet Articulation: The ability to speak each word clearly.
    (B) Non-Verbal/Non-Spoken Communication Skills (Problematic in Autism Spectrum Disorders (ASD))
    bulletUrge to initiate shared social interaction and two-way communication: Theory of Mind.

    The ability to socialize/relate/empathize requires a working “Theory of Mind.” Theory of mind refers to the relatively unique ability of humans to understand: (1)that I have a mind, (2) that you have a mind; and most importantly, (3) that our minds may not know or be feeling the same things. Without a theory of mind, there is little point in communicating. After all, who would you be communicating to? There is limited ability to truly recognize that there is another human being in the room. It will be difficult to feel the need to communicate with anyone else. It may seem as if there is a plane of glass between the child and others. Eye contact will be poor.

    With limited ability to “get inside your mind,” it will be frequently difficult for the child to demonstrate empathy for what you are feeling. For example, a child with theory of mind problems may assume that since he is happy, then you must be happy; or the child may not understand that someone else is deceptive when his own mind always attempts honesty.

    Thus, the ability to recognize that you have a mind, the ability to relate to that mind, and the ability to empathize with that mind are all parts of the same skill. It is felt that theory of mind problems underlie many of the difficulties seen in the Autistic Spectrum Disorders.

    Closely related to the “interest” in social communication (that arises from a working theory of mind) are the following skills. They are required to actually achieve the meaningful interaction. Certainly, if you don’t have these skills, your ability to appear interested in social interaction may become blunted.
    Pragmatic language: The practical ability to use language in a social setting, such as knowing what is appropriate to say, where and when to say it; and the give and take nature of conversation. Effective pragmatics requires a working theory of mind: the ability to figure out what the other person does or does not already know—or might or might not be interested in hearing about. Examples of pragmatic language/theory of mind problems would be:
    A new student moves into the school district and enters the classroom for the first time. The teacher asks him where he comes from. The Autistic Spectrum child responds: “From the hallway.”
    As an Asperger’s child walks into the office, the doctor notices that her pink shirt matches the color of her jacket. He jokes, “If you change into a green shirt, does the color of the jacket change, too?” The child responds: “My wardrobe includes a turquoise shirt, not a green one.” This child’s spoken language is precise, but she misses (1) the actual meaning of the question; and more importantly, (2) misses that the whole purpose of this conversation was just a little fun chit-chat to initiate an interaction.
    The skill to know what is—and what is not—important
    Ability to see the big picture rather than fixate on details Ability to maintain a full range of interests.
    Symbolic play skills
    Give a child a yellow box on wheels, with thin long black strips on it. The ability to understand that this object actually represents a school bus is a type of communication—just like the ability to recognize that the letters “C-A-T” stand for a furry animal. Both involve the use of symbols rather than the actual object to communicate.
    By 18 months, most toddlers start to use objects as symbols for something else. For example, a cup is for drinking, but it also makes quite a handy telephone. By 3 years of age, most children are quite good at “let’s pretend” activities, such as “You be the cowboy!” The toy school bus is not fascinating because the cold metal box can move, but because little toy figures chat while getting on it as they go to school. Stuffed animals are not just warm rags of cloth to drag around, but living creatures that have feelings and needs.
    So, by 18-36 months of age, typical children make continuous progress in the skill of appreciating the representational meaning of a toy, rather than focusing on its straight forward visual attributes. Failure to develop representational/symbolic/pretend play is a strong marker of the Autistic Spectrum Disorders. After all, if you cannot understand that a physical toy bus represents a real truck, how could you understand that the even more purely representational sound “bus” represents a real truck.
    Non-verbal (non-spoken) transmission of language. The simple sounds are not the only thing my body sends through space when it attempts to communicate with you. It also transmits:
    Facial expressions
    Body language
    Tone and prosidy of voice

    · Associated skills sometimes also involved with language problems:

    o Motor (muscle) coordination, including both gross and fine motor.

    o Spatial orientation.

    o Overall cognition.
    Lasted edited by : May 24, 2014
  19. Fran

    Fran Former Site Owner

    Amy, my suggestion is do the parent report. It will help cue your memory to things that may be helpful.
  20. 'Chelle

    'Chelle Active Member

    I don't know if anyone suggested it yet, but I found this site to be very helpful. Make sure to do the Pervasive Developmental Disorder (PDD) assessment scale/screening questionnaire (#6) and see what it can tell you. It's not a diagnosis, but it could point a few things out for you. Print it out and take it to the appointment. for your doctor to check out.