Got testing results and diagnoses. Hold your hats.

Discussion in 'General Parenting' started by Otto von Bismark, Nov 9, 2011.

  1. We finally got test results for my son -- the meeting with psychologist to go over results was almost surreal.....
    he started on one thing, then moved to another issue, and it all went from bad news to worse and worse.

    I know the guy felt horrible telling us.

    First...his IQ is in the 70-75 range. So he has borderline intellect issues. That was a shock. We knew it was on the lower end of normal ( school tested him at about 85 in K).

    Then, when we recovered from that, he told us that on the ADD testing, he did so poorly on impulse control that he had never seen a child score that badly on that part of the test, and had to recheck to make sure my son hadn't quit on the testing, or something else didn't go wrong with the test itself. He has a 99.9% chance of ADHD.

    He also has significant auditory processing problems.

    Then, he def has autism spectrum.

    And the icing on the cake -- conduct disorder for real, no longer just suspected.

    So, we have autism, huge ADHD, huge auditory processing, low IQ and conduct disorder with suicidal tendencies and animal killing. The part that breaks my heart is reading about how terribly unhappy he is. There was a lot on that.

    Just when I thought things couldn't get any more bleak, right?
    At least we know and can start being proactive, instead of wondering if he is lazy or defiant because he "won't do" his math. His math portion of the IQ test scored in the 62-65 range. Poor thing. He kept saying he "couldn't do math and his teachers would yell at him for being lazy.

    So ways to be proactive include starting out with Intuniv -- a medication. Anyone know this one?
    Changing expectations of what he can do should relieve some of his stress.
    Getting some services in place should also help. Now that we have diagnoses, we can get things moving.

    The most surreal part of all -- this testing took many hours and ended up costing what I expect was almost three grand. Our insurance approved it but will kick in only a few hundred bucks. We paid $750 and were planning on setting up a payment plan with the doctor after the appointment. The doctor said that he would not collect on the rest of it, and it was his gift to us. "It was the least he could do," or something to that effect. I know he felt sorry for us. Can you believe it?

    We had the same reaction with the psychiatrist at the hospital, who could only say, "It's so sad..." when we were leaving.
    Phew. On to the next phase, I guess. Feeling pretty sad today.
  2. Chaosuncontained

    Chaosuncontained New Member

    First of all I'm glad you finally have dxs. Although it is a lot to be handed all at once. BIG hugs.

    Carson takes Intuniv Carson is diagnosis as moderate to severe ADHD. We haven't seen much improvement with it, actually. But then again, Carson has been on A LOT of ADHD medicines that either work for a *short* time--or don't work at all. I suspect, though, that he is being treated for ADHD, when really it most likely is something else. I hope someone else can tell you they got excellent results from Intuniv for their child who is ADHD.
  3. Liahona

    Liahona Guest

    While that was nice of the doctor its not the kind of nice you really want. I'm sure you'd rather have had different news and been paying out the nose for it. At least you can start changing things. Especially changing how teachers react to him and expectations so he can be happier. You can start focusing on skills he'll need for after he is 18. So glad you are getting the IEP.

  4. JJJ

    JJJ Active Member

    I'm sorry that the results were so bad.

    You are right that there is a silver lining. in my humble opinion, you may see the Conduct Disorder fade away as the other issues are treated. Your poor son hasn't been able to meet expectations at school due to his low IQ, has had difficulty understanding the meaning of others' language due to his Auditory Processing Disorders (APD), been lost in social interactions due to his autism and been unable to control himself due to the ADHD even when he wanted to control himself.

    Now, you have some direction. You have already started with Intuniv which should help with the hyperactivity and impulsivity. It may take some trial and error to find the best dose.

    I'd suggest calling an IEP meeting so that his IQ and achievement results can be discussed and his curriculum can be adjusted. I don't recall if he is having significant issues at school but now may be a good time to explore whether or not his current placement is the most appropriate one for him. If the school has an Autism Support Specialist, I would suggest asking for her/him to attend the meeting. For the Auditory Processing Disorders (APD), FastForWord is the premier program but it is very expensive. Earbonics is a cheaper version. If your district has FastForWord or will pay for it, that would be ideal.

    Has your son heard the results yet? Since it is clear that he is very unhappy, it may be a good idea to explain to him that the testing found why he is having problems and that there are ways to help him. That he will not have to 'get better' on his own, the his family, his teachers and his doctors are all going to be part of his team. (Maybe if he likes basketball or football, you can compare it to that.)

    Today is better than yesterday, you have more knowledge than you did.
  5. DDD

    DDD Well-Known Member

    It's a terrible shock to "see" and "hear" the various diagnosis's. You're receiving alot of caring support from those who have been there done that. Like any other trauma it takes awhile to let it seep in and then come up with a plan.

    Keep making entries in your notebook of every contact you make, phone numbers and dates. It sounds as though you lucked out in getting compassionate identifiers and somewhere down the line they, and others you have contact with, may be able to provide some future guidance as you travel the long road.

    I think JJJ is right on target about sharing. Short. Sweet. Optimistic. I've never known a difficult child who didn't sense the tension during the diagnosis stage. Better to address it and then move on. Hugs DDD
  6. buddy

    buddy New Member

    So sorry for the heart breaking results. I agree too that you have now, a huge chance to make great progress. After going through this for years now, and being on teams with kids who get many diagnosis over the years, I would not get too excited about the conduct disorder diagnosis especially. For one thing, (and i am not a psychiatric. so this is just mho and experience) I wonder about its validity given the presence of another medical diagnosis that can account for the behavior...i remembered something I copied from ODD when someone asked me about it for my son:

    I was told the same for my son who has autism and ABI. Not sure how different conduct disorder technically by the dsm manual but still, in real life, I would suspect the same as jjj, you will likely see some of those behaviors go down once appropriate expectations and teaching methods are implemented in his life. I would hope this will get you supportive programming at home. That may be a benefit of the added diagnosis of conduct disorder, because the cost to society of a child who is out of control would be far more expensive than to support him in your home. So for now, use it to your advantage but maybe not so much think of it as who your child is...just a reflection of the circumstances I am suspecting/hoping. (I have seen many kids misdiagnosed with behavior disorders, ending up with mental health, cogniive, and other challenges which more readily accounted for the behaviors)

    I think the auditory program that was meantioned (I have used it for students and have the home version for my son) is earobics. It IS wonderful Very easy to use. He should be able to receive lots of therapy now that you have this info.

    Gentle hugs and support going out to you. He is still your same lovely child, you just have more information about how he learns and functions. luv, buddy
  7. HaoZi

    HaoZi Guest

    You have a starting point on a map to help him. You know that he will a lot of advocating from you for a long time. Autism Spectrum Disorders (ASD) kids often react to medications differently than NT kids, so keep a close eye on ANY medication changes (medication, dose, time taken, etc) for unexpected effects (good or bad). Kiddo took Intuniv for two days and I pulled her off of it because it started up her "feet issue" (some medications cause this bad pins & needles tingling in her feet at bedtime, to the point of pain and no sleep). Docs expected Abilify to sedate her - it doesn't. It activates her, so I give it to her in the morning instead of at bedtime. That's an off-beat effect we can live with.
  8. Steely

    Steely Active Member

    HUGS. It hurts to know the truth - yet it also now gives you a time to do everything over. Get him in the right classes, on the right medications, and perhaps things will finally turn around for him.
    I know the horrible feeling of someone telling you that your child just scored the worst on a psychiatric test of anyone they had ever seen. I freaked out. I was so scared. But in hindsight, it was rather useless information for the Dr to tell me that. That kind of info is unnecessary. The facts are what you need - because those can be empowering.
  9. soapbox

    soapbox Member

    Well. OvB, I've got some news for you.
    At your difficult child's age, probably half of what they told you is inaccurate.
    Yes, really.
    Its as close an estimation as they can come to right now.

    SOME if it is likely to be accurate in the long run, so lets start there.

    Autism Spectrum Disorders (ASD) is likely to stick. Its a major, pervasive condition, which often includes some of these other issues. Assume its accurate, and do your research, and find out what kinds of interventions and accommodations work for Autism Spectrum Disorders (ASD). Anything recommended for any other diagnosis, needs to be cross-checked against Autism Spectrum Disorders (ASD) needs.

    Auditory Processing Disorders (APD) is also likely to stick. (me on my soapbox now...) NO medications for this - just accommodations and interventions. Getting help here, should make a major impact on behavior in the medium term. Auditory Processing Disorders (APD) alone is enough to drive a kid crazy. Severe Auditory Processing Disorders (APD) is worse. Add in the other stuff... and you can easily argue that he is being driven to insanity/psychosis.

    ADHD - sounds like mostly executive functions issues, which medications generally don't touch. The hyper part, drugs SOMETIMES impact. Difficulty managing focus seems to respond better, on average, to medications than other parts of ADHD - but that isn't listed as HIS issue. SO... not sure if you're going to see much impact from medications. However... see notes in CD section...

    ADHD + Auditory Processing Disorders (APD)... well, the whole ADHD thing might really go down, though, in time - because Auditory Processing Disorders (APD) can look an awful lot like ADHD. So... get help for the Auditory Processing Disorders (APD), and see what happens to the ADHD.

    IQ - keep it in the back of your mind, but its highly likely that this result is LOW. Autism Spectrum Disorders (ASD), Auditory Processing Disorders (APD) and ADHD... he hasn't had a hope of a chance to learn nuttin. Start dealing with the issues, and the results will change. Not that difficult child will end up with a score of 140 or anything... but its a huge diff between what you've been told, and say 95 or 100! Being wrong by 10-20 points is not unheard of... "especially when there are developmental issues in the picture".

    CD - need to have that diagnosis right now, to get services to keep him - and everybody else - safe, because making a difference on the other stuff will take time. However... secondary insanity can produce this behavior, without it being an actual primary diagnosis. This may well fade in time. Meanwhile... if the behaviors are really extreme, sometimes psychiatrists will try AP medications, especially in kids with Autism Spectrum Disorders (ASD). And sometimes, it works. When it works... no it doesn't solve the behaviors, but it does create a bit of capacity for things like empathy, which makes it possible to work on the behaviors... (if that makes sense).

    If I've totally confused you, please feel free to ask questions!

    Feel for you - its a tough curve in the road to wrap your brain around this stuff all at once, and to adjust your dreams and expectations. Just remember... there will be many more adjustments to come, and not all of those will be negative. It will take a few more years before you have a better idea of who your difficult child really is and what direction things are going in.
  10. Steely

    Steely Active Member

    Ohhhh really good point SB - REALLY good point.
  11. keista

    keista New Member

    ((((HUGS)))) So yeah, it's a tough battery of dxes, but as some have stated, the IQ and CD can certainly change over time given the circumstances - so there's your silver lining.

    Helen Keller just entered my head as a basis for comparison. Before she had language, she was not capable of much at all and her behavior certainly wasn't acceptable in any situation. difficult child has language, but due to all these other unaddressed issues, his ability to learn anything has been stunted.

    Another thought popped into my head. Was any testing done for dyslexia, dysgraphia or dyscalcula? If not, you should ask the school for such evaluations right away. These could be underlying issues as well.
  12. soapbox

    soapbox Member

    Reread this thread, and some of your others again, OvB...

    Mind if I toss out one more diagnosis that they did NOT give you but that might fit?

    Try Developmental Coordination Disorder (DCD) on for size - developmental coordination disorder.
    Now, if he is Autism Spectrum Disorders (ASD), then they may not give this as an additional diagnosis, because it can be part of the spectrum - but it is useful to see it separately. Just like ADHD often goes with the spectrum...

    The reason I'm bringing it up is...
    1) he hates writing
    2) he hates math

    If you have fine motor skills problems (one component of Developmental Coordination Disorder (DCD)), then you get nowhere with either math or writing.
    Oh, you "can" - maybe - form your letters fairly neatly. Maybe even half-ways to speed.
    But you can't "think" and "write" at the same time. Or you can if its small, but wear out really fast.
    And that's just writing!
    Math... can't form numbers correctly - or couldn't back in grade 1 when you learned basic math.
    Can't line up columns. Can't work with those tiny "manipulatives" they use as a hands-on way of learning... (nothing against the concept... they are just TOO small for kids with challenges to work with!)
    Didn't get the basics mastered, and now its on to the "real" stuff that depends on knowing the basics...
    Either way... the result is work refusal, and the teachers treat it as 100% "attitude".

    Did they run the Movement ABC - 2 test? Its an Occupational Therapist (OT) test of motor skills and motor integration, if I understand it right. Would tell you alot about where he is at with motor skills. If it hasn't been done - and especially if he hasn't had an Occupational Therapist (OT) evaluation in the last 3 years - it would be useful.

    Motor skills issues supported by Occupational Therapist (OT) at least... usually results in access to accommodations that significantly reduce writing, and if appropriate, a computer to take some of the mechanics of writing out of the equation.

    One reliable source of info out there about motor skills problems including Developmental Coordination Disorder (DCD), is There are others too - let me know if you want more info, and I'll look up some of the other good links. (I use canchild all the time, so don't have to look it up!)

    Some stats, if you're interested... not sure what happens when Autism Spectrum Disorders (ASD) gets added to the mix, but.. we've been told:
    - 50% of kids with ADHD, also have Developmental Coordination Disorder (DCD)
    - 70% of kids with ADHD plus a Learning Disability (LD), have Auditory Processing Disorders (APD)
    Last edited: Nov 9, 2011
  13. I have soooo many replies to specific things people have said, but I can't write until later. You have all been so helpful. I will reply in depth in a few hours. Thank you again. I don't know what I would do without you guys......
  14. Nomad

    Nomad Guest

    How old is your child? If it is the youngest, I think Conduct Disorder is not usually diagnosis'd until later.
    Perhaps all that is going on is confusing the issue.
    Has he had severe or multiple problems with obeying rules and/or problems with the law?

    As others have said, make sure you get a consult regarding medications as appropriate and an IEP. Qualified teachers and a good education will go a long way, as well as tutoring to help him keep up in school.

    Please make sure you keep good care of yourself and your relationship with your significant other.
  15. buddy

    buddy New Member

    Take your time, this is so much and it is all for you. You dont have to reply to anything, you can just take it in and mull it over. There is so much. I am in a huge sorting thru things phase too, (though certainly not as hard as the very beginning where you are), so please be kind to yourself, try to have some just "off" time to enjoy something that has nothing to do with any of this. If you can, it is really helpful.

    luv and hugs, Buddy
  16. TerryJ2

    TerryJ2 Well-Known Member

    Otto, I am so glad that the doctors "gave you" the break on the bill. Phew, what a relief!

    I agree with-the others that a diagnosis will really help, and once you learn how to deal with-Autism Spectrum Disorders (ASD), hopefully, most of the CD behaviors will disappear. Can you imagine being yelled at for being slow and stupid and not having the impulse control, sensory buffer or maturity to deal with-it? Anyone would feel crummy, but having those issues is a huge handicap. Once you have an IEP in place, the teachers will cut your son a lot more slack, and hopefully, cater the teaching to his level, and slow it down and give it to him in smaller bites. It will do a lot to calm him down.
    I have no idea what to say about Intuniv. Others here can help.
    I am so glad you finally got some info. Expect it to change over the yrs, but not necessarily to a major degree. I have learned that I will accept any diagnosis (almost) that will get my son the help he needs.
  17. My son is 13. He is youngest. He does not obey rules at home, but he is not defiant. Just now, since the hormones have kicked in, is he questioning us or giving us attitude.

    He just seems to always ignore a rule and say, "Oh. I forgot." Sometimes I think he really forgets.

    We have known about the Autism Spectrum Disorders (ASD) formally since he was five, and I think I knew it when he was about 3.

    He has had no problems with the law, but a few years ago, when he was 8 or 9, he watched a neighbor put in a garage code, then later, he tried the code and the garage door opened. I think the neighbors caught him walking into the kitchen. I truly think he had no intention other than to see if he could get the door to open with the code.
    He has never stolen.
    He has killed about 10-15 small animals, including chickens, lizards, hamsters and guinea pigs, and has admitted to hurting our dog. This all came out within a few days, a few months ago. He also masturbates in public -- school, in front of his sisters. This is where I think the Conduct Disorder comes from.
  18. We have known about the Autism Spectrum Disorders (ASD) since he was 5. They were just questioning it in the hospital. We have gone the whole Asperger's route -- visual schedules, finding a special skill or interest, but it never seemed like just Autism Spectrum Disorders (ASD), because he was so slow cognitively.

    The Auditory Processing Disorders (APD) -- I am actually a new FastForward Provider -- I was going to use the software on my dyslexic daughter, first, and see how it goes, but I think my difficult child son gets first dibs. We will be starting right after Thanksgiving. I will keep people posted. If you are right -- that would be great if we could reduce some of the Auditory Processing Disorders (APD) struggles, so he can get a little focus in his life.....he told me today, when I asked him, that he hears me perfectly fine when we are alone, like driving in the car, but when there is a lot going on....he actually can't hear anything. Does that sound like Auditory Processing Disorders (APD). And....his classroom is full of 15 special needs kids, so I know it isn't calm and quiet. When he was in public school, I got them to agree to him having wireless headphones in class on his IEP. He hated using them, though.

    CD -- you are right!! They already tried an AP medication -- Abilify, and he had hallucinations on it after one dose. I would love to see just a little empathy somehow. He has none. He admitted to NEVER feeling it ever, but he wishes that he could feel bad about lying or about killing the animals, so he could be like other people. That broke my heart.

    IQ -- this is the part that I really think we have to adapt to, to help our kid. When I don't give him something to do, usually he just sits. Never plays, never does anything that shows that he is using his mind, really. His few tangents are just wastes of time, it seems -- nothing comes out of it. For instance, he will say he wants to draw a perspective drawing of our entire kitchen, then, when he can't -- I mean, that's really hard to do! -- he gets mad. I try to help him get started drawing smaller things -- have gotten him drawing books where you draw one shape at a time, have drawn with him, given him guidance to do abstracts, etc...he just quits after five or ten minutes.

    I have gotten him coloring thing that aren't babyish -- there are some draw by number type things that are not for kids, and he will do that for a day or two. But...nothing lasts. No hobbies.

    Sometimes he will read for a few minutes. Not long. He usually ends up just looking at his old school yearbooks and photo books. Our family is very sharp-witted. We are always going off on intellectual tangents, making word-plays, referencing obscure things, cracking political jokes, We need to change some of how we talk and what we talk about to keep him in the loop. I think this will be better for him when his sisters go to college.

    So, I was thinking he was wasting time by just sitting there, before the diagnosis. I guess I never thought of a life that wasn't totally rich with learning and exploring -- even just exploring ideas. He just doesn't seem to want to do anything really. Now I wonder if that is IQ talking.

    I try to give him stuff to interest him. I got him an iPod and we put some music on it (we had to take it away for about 6 months). We are trying some art stuff. Taking singing lessons. Giving him photos to look at....scrap booking, collecting money from around the world. No interest. He just wants to watch TV, or use technology ( which he uses inappropriately -- he just got his iPod back because he would have marathon iPod/masturbation sessions all night long on a school night -- we had to take it away). Is this lack of interest an IQ thing? He has always been like this, and there is no signs of depression in his testing.

    Thanks again you guys, I am considering everything you all say and learning from it.
  19. buddy

    buddy New Member

    IQ does not dictate interests or a person's motivation to start a new activity. There are people with very low IQ scores that have a variety of interests and want to do anything that is presented to them. Limited/restricted/repetitive interest areas is a symptom in autism. Not all kids with autism will ONLY do their special or high interest area, but many would prefer to do that most of the time. My son has a terrible time with anything new, even a new card game...but he wants to do it...just so hard to do anything outside of his interests without a challenge. Once he is comfortable though, he wants to do it again.

    Yes, you may have to think outside of the box. For example... my kiddo likes to know what is in every building he sees. Especially if it has a sign nearby. His Integrated Listening Systems (ILS) workers take him to different places, banks, hair salons, cell phone stores, warehouses, etc. sometimes he just walks in and walks out, but he just likes to know. If people are there, he practices saying hello and just asking what their business is and then saying thanks. (he gets lots of free stuff that way, it is kind of cute to them...I think a little strange, but people are nice to him--tee hee) It is really hard when you have a kid who does not like to do much. But as the book says... you will dream new dreams. We as parents need to give up the original dream for our children and dream new dreams. Dreams that match their desires for happiness.

    my opinion, for what it is worth...tee not get too hung up on IQ. That testing can be useful to say the strengths and weaknesses for processing and are the subtest scores for visual learning higher than auditory learning? IQ does not say much about what a person can accomplish in life. Especially since the norms are not made on people with autism. it is only a tool, a small piece of the puzzle. in my humble opinion anyway, both in my personal life with difficult child and in my professional life.
  20. Buddy -- your opinion is worth a lot! Thank you so much.
    I am trying to figure out how to dream new dreams. I was researching how to run a group home. It's not out of the question at some point. I am going to get started on Fast ForWord for the Auditory Processing Disorders (APD).

    I want him to find meaning in life, and stay on the right side of the law, have a job to do that makes him happy. I will do whatever I can to help that happen for him. The lack of empathy scares me, but we'll deal with it because it's what we've got.

    I don't want to be hung up on IQ at all. I am not an IQ snob, I just want to understand it. I have never thought about IQ before. Once I can process it, I will let it go. I am just trying to figure out -- after 13 years -- how to give the kid something to do besides sit and stare into space or follow me around the house. That is really hard.

    His visual processing was in the 2nd percentile. Visual scanning and tracking are very hard for him.
    His non-verbal reasoning are bordeline 8th percentile-- with a high degree of variability.
    His verbal abilities are in the 19th percetile, however, so that is a little stronger. Maybe this is why he talks constantly. : )

    So, visual tracking is hard, but I can't give him books on tape or old time radio programs for fun, because his AP is bad.
    I guess this is why he turns to television. It is something he can do. I am not a fan of TV -- I lived without it for many years. I would like to find something he can do besides that. Some TV is fine -- we watch programs as a family too, and this is fun for us. find something he enjoys and does well, and maybe turn into a vocation ( Temple Grandin advocates parents helping their Autism Spectrum Disorders (ASD) kids find something they are good at and turn it into a career)....that is the challenge.