6yr old...can't get diagnosis

Discussion in 'General Parenting' started by mxtexas, Feb 8, 2010.

  1. mxtexas

    mxtexas New Member

    I wanted to share my experiences with others in hopes of getting further insight as to what might be going on with my son. My boy is 6 years old and is an identical twin. Both he and his brother were diagnosed at 4yrs with Sensory Integration Disorder (Sensory Integration Disorder (SID)). This was first brought up in an evaluation based upon their week fine/gross motor skills.

    Therefore, and understandably, they can get easily frustrated when pushed to do something they feel is challenging. Countless hours of Occupational Therapist (OT) and PT have help this greatly.

    However, each of the two boys has had issues with attention and outbursts in school, thus we put them, at the recommendation of our pediatrician, on ADHD medication. Boy #1 responded very well to 5mg Focalin and is doing great in school. Boy#2 did not. He has tried Focalin 5mg and 10mg, Concerta 18mg and 27mg and Intuniv 1mg with no success. He is the boy I am trying to figure out here, with the help of this forum.

    We have had boy#2 evaluated by a psychologist...for which we got a diagnosis of ADHD. He was also assessed to have an IQ of around 125. He is very verbal/articulate and has been from the age of 2. He is 6yrs old but is graded at reading at a 5th grade level. He does have interests..but nothing i would call an obsession. He has difficulty making eye contact, but can and will when prompted.

    He can be very loving at times, but when he is in disagreement with us (adults or teachers) he is very defiant...saying things like "No...I refuse", "You are not the boss", "You can't tell me what to do", "I hate you", I'll kill you", etc. Believe me...it is shocking. He will hit, kick, bite and throw when attempting to discipline him. At other times, he can be sweet and compliant...even thoughtful

    We are having some real problems at school and have removed him from his regular mainstream classroom and have been driving him to an alternative school that accommodates kids with special needs, offering him a smaller classroom environment.

    I am unsure of what I am looking at: What does through my mind, changes from week to week. Is it ADHD? Is it Aspergers Syndrome? Is it ODD? All of the above?

    Been to a developmental pediatrician..but got no sort of diagnosis. His regular pediatrician says that he is "Spectrum-ish", but referred us to a pediatric neurologist. The PedNeur says that he has a mood disorder, having only seen him for about 30 minutes.

    Hoping that the collective insight of this board will help me figure him out.
  2. DaisyFace

    DaisyFace Love me...Love me not

    Hello and welcome!

    Unfortunately, we are all just parents here and cannot diagnose your son. And it sounds like the docs are already working on an "Alphabet Soup" full of labels for him.
    "Spectrum-ish"--really? What an un-helpful term!
  3. JJJ

    JJJ Active Member

    It sounds like the docs are looking at alot of things. From a parenting point of view, have you read The Explosive Child by Greene - it can really help a lot with kids like this. It is a different kind of parenting.

    diagnosis tend to fluctuate as a child ages and symptoms ebb and flow.
  4. TerryJ2

    TerryJ2 Well-Known Member

    Well, odd grammar aside, spectrum-ish sounds good to me. :)
    It is a very frustrating journey, but it sounds like you're on the right track.
    I would read the Greene book, plus, Douglas Riley's book, WHAT YOUR EXPLOSIVE CHILD IS TRYING TO TELL YOU.
    Welcome! Sorry you had to find us.
  5. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Before you said anything, I thought "Aspergers." Sensory Integration Disorder (SID) is a big symptom as well as ADHD energy and inattention. They also tend to be very rigid and not transition well.

    I would seriously look into it for both boys, since they are identical twins.

    School interventions help a lot more than medications. My son has this and has REALLY done well with services. I'd take them both for a second opinion, and a neuropsychologist is probably your best bet. These kids are often very smart, and VERY verbal (they can sound like Little Professors), but they are socially clueless and need to literally be taught how to read social cues...and what they are. They don't just pick it up like other kids do. They also tend not to understand rules about authority and really don't understand why an adult is "over" them just because they are older. They can argue for hours over "fairness." Regular discipline does not work with them. You need to understand how they think to communicate with them. It's not easy, but it's worth it in the end (if this is the problem with the boys). They also tend to have very intense obsessive interests, but not a lot of them.

    Can the boys socialize well with other peers besides one another? This is a big clue. Can they hold a give-and-talk conversation or do they tend to either monologue at people in a large vocabulary OR just answer "yes" "no" "I don't know."
  6. TerryJ2

    TerryJ2 Well-Known Member

    They can argue for hours over "fairness." Regular discipline does not work with them.

    That's for sure! You're talking about my son here, LOL!
  7. Marguerite

    Marguerite Active Member

    The fairness issue - that also very definitely fits with Asperger's. Oh, yes indeedy...

    Yes, it does seem unhelpful - but I think it would have been more unhelpful for the doctor to say nothing and keep his thoughts about possibilities to himself.

    The trouble with diagnosing anything complex, and I include Asperger's in this, is that it is very inexact. it also takes time, and has to go through various stages. For example, somewhere along the line you will be asked about the history of their speech and language development - were they on schedule? Was there anything unusual about how they began to talk? You also will need a psychometric assessment done at some stage, preferably not merely one done by the local school, because what they need requires a lot more attention to detail than schools have the resources for. But a school assessment can be used as a starting point.

    Somewhere in there you need the Occupational Therapist (OT) assessments (for the Sensory Integration Disorder (SID)) and other relevant professionals also putting in their oar.

    And then, only then, will all the professional ideas be able to be gathered together into one pot. That is when someone like the doctor who has been saying, "spectrum-ish," has at last all the information needed to be able to say, "Yes, definitely on the autism spectrum," or "no, definitely not because of A, B and C."

    It took us several years to get all this together and finally see the people we needed to see. And even then, wee were needing to get the diagnosis challenged and independently reviewed. For three kids. It was hairy.

    So what do you do in the meantime?

    1) Read the Book. Explosive Child. It helps. Boy, does it help! With easy child kids too, as well as difficult children. Especially if your kids are really into "fairness" and also are very frustrated with short fuses, those methods will make a big difference. It's not a cure, mind, it just makes it easier for your boys to learn how to mesh in with other people and their requirements.

    2) If you want your own unofficial idea of how spectrum-ish your kids are, then do the Pervasive Developmental Disorder (PDD) questionnaire on www.childbrain.com. Print out the result whatever it scores and take it with you to appointments. It can speed things up a bit.

    3) Follow your instincts. Get inside your kids' heads and try to think form their point of view. Use that as your starting point. Anything they're interested in - give them more of it. Whatever they need - give it to them (within reason, don't beggar yourself). Use it to help ease them into what you want for them. But we went years accommodating the different food faddishness, only occasionally challenging but without making it a huge issue. The safer the kids felt, the more we got out of them in terms of cooperation on the occasions when I had to insist. There are techniques you can learn, even work out for yourself. Keep them interested, keep them stimulated, keep their minds working constantly. Find ways to help them with what is difficult. When you get criticised for their bad behaviour or bad parenting, ignore it. Your kids are different and won't fit into the box, so try to shape the box around them that they need and work from there.

    We have developed a lot of little things that worked for us in different situations. But the general principle is - avoid punishment. Use positive motivation instead. Lots of rewards. Consistency. Organisation. Routine. And the occasional challenge, as far as they can handle it.

    difficult child 3's Grade 1 teacher had twin boys, identical, ONE with autism and ADHD, the other not.

    One last thing - don't believe what you are told about how they will always be dependent, always need you, never amount to much. Nobody can tell you this because nobody can know this. Have faith, and live as if that faith has already borne fruit. That gives them the best chance. The high IQ is what helps these kids adapt. difficult child 3 called it "pretending to be normal." It's the best description of how these kids have to learn to cope, lifelong.

    Recently difficult child 3 was asked by a news crew (the link is somewhere floating around - Google "Sunday Night", "Channel 7" and look for "autism solutions") if he ever wished he didn't have autism. The answer is no. He is happy being who and what he is. He sees his autism as giving him a few problems, but also giving him gifts and talents that other people can only dream of.

    That's ma boy!

  8. gcvmom

    gcvmom Here we go again!

    It's possible there is ADHD, Asperger's AND a mood disorder. The fact that he does not respond to the stimulant medications suggests to me (and I am NOT a doctor) that there very well could be a mood disorder involved, since they can share similar symptoms with respect to inattentiveness, hyperactivity, and emotional reactivity to name a few.

    What sort of treatment did the pediatrician neuro suggest?

    If you want another opinion, by all means, seek one out with another professional. If you haven't already seen a pediatric psychiatrist, that might be a good door to knock on.