Well it's not Asperger's - I guess it's ODD afterall!

[TiredSoul]

Arrrrghhh! So we went back today for our 2nd appointment with dev pediatrician at a nearby Children's Hospital. I brought the completed GARS-2 questionnaires. He scored them. All 4 ranged between 65-70. An autism index of 69 or less means UNLIKELY. On one he was 70 which is just barely LIKELY.

He said it looks like he really just has ODD which is underlying for his ADHD. He said the gold standard for treating ODD/CD is PCIT (Parent-Child Interaction Therapy). He said he didn't know of anywhere in our county where they offer it. He also said he gave his notice yesterday and will not be there much longer. Who cares - I was never impressed. What a waste. He also does not buy into sensory processing disorder (SPD). He says it does not exist.

So there you have it! I have been reading up on PCIT which coincidently has a lot to do with attachment which I am also looking into. Anyone have any experience with this? Tia!

 

[TiredSoul]

This was my post from the first appointment: (posted 5/2/12)

So we waited 6 months for this appointment. We actually requested a referral for a neuropsychologist evaluation from our pediatrician but this is what we ended up with. We were told we would be meeting with a team of docs and to expect the appointment to last 2 hours. We met with just the one dev pediatrician for one hour. He asked us to talk about our concerns and I did (with difficult child in the room which was very uncomfortable for him).

He stated it sounds to him more like Asperger's than ADHD/ODD and asked us to have the GARS-2 filled out by us as well as his teacher(s) and follow up with him once completed. I have had his 2 teachers and Special Education teacher fill them out. I would like some idea what they indicate before I decide if we are going back. Does anyone know how to read the raw scores?

Here is what he indicated in his report after our initial meeting:
difficult child does exhibit many features of an autism spectrum disorder including inconsistent eye contact, somewhat limited peer relationships, poor conversational reciprocity, limited imaginary play, a narrow focus of interests, behavioral rigidity, and a number of atypical sensory behaviors. I discussed with difficult child's parents that this constellation of symptoms is most consistent with Asperger's Disorder. The one bit of history that doesn't quite fit is that difficult child may intentionally annoy others at times, which would be more consistent with ODD. Still, the preponderance of evidence seems to suggest an Autism Spectrum Disorders (ASD).

I have a feeling that if we do go back there, he will be diagnosis'd with Asperger's and I just don't know if I am ready for that. I am having a hard time with this. I don't know if it's because I don't want to believe it, or if I really think it doesn't truly fit. Am I in denial? I have considered this for years. He shows little pieces of Autism Spectrum Disorders (ASD), but I always thought not enough for it to be the case. I feel like if he is given this diagnosis, it happened too quickly. There hasn't been a thorough evaluation. He gathered all of this by just listening to me talk. He didn't talk with difficult child. I have a hard time with subjective questionnaires too. I just don't know.

Does anyone have copies of their GARS-2 so I can get an idea with his raw scores might indicate?

 

[whatamess]

You know, I really believe, it is our verbal children on the spectrum, usually Asperger's or Pervasive Developmental Disorder (PDD)-not otherwise specified, that are seen as being intentional in their annoying of others, when from their perspective they are not doing it to purposely harass or annoy, it's because they are lacking insight and skills. Please don't let this doctor convince you it's ODD, that would be a huge disservice if your child truly is on spectrum.

 

[InsaneCdn]

Ummm... one developmental pediatrician, who isn't even going to be around, has nothing to offer in addressing the problem, and doesn't even believe sensory processing disorder (SPD) exists???

I'd say you got a dud. They do exist. Lots of us have had them.

ODD - toss it out the window. It doesn't tell you any more than the dud of a doctor did.

Trouble is... where now?
We had to fight for years to get our dxes (not on the spectrum, basically everything else but that...)
And all the trash from doctors who didn't have a clue...

The point where we started making progress? I bought a stack of books about all of the disorders that might even be remotely related... and did my own digging, and came up with my own dxes. And THEN went hunting for the doctors who could diagnosis any one specific item. Once we started getting a string of reports and dxes following us around, we started to have a hope of getting a true comprehensive evaluation.

Have you started a parent report? If not, look for a recent post by Susiestar... she keeps the link in her signature.

 

[lovelyboy]

Aghh.....I know exactly how you feel!
My son were diagnosed by a SI trained Occupational Therapist (OT) as having sensory processing disorder (SPD)....and by a very good quilified ST as having Auditory Processing Disorders (APD)....Both said his profile fit Autism Spectrum Disorders (ASD) kids.
He were assessed by a psychiatrist who spes in kids....She first diagnosed possible ODD.....Then after 3 more sessions said Autism Spectrum Disorders (ASD) not otherwise specified.....
So we took him to a child neurologist....appaerantly one of the best known in our country! His 2 nd sentance he said to my son was" and you can drop your bad attitude"!!!! From there all went downhill! He said nothing is wrong with my son, dismissed ALL reports....and gave us a lecture on parenting! He never explained my sons abnormal EEG...headaches, vomiting or what CAUSES his bad behaviour! The psychiatrist was very upset and told him to keep his psychiatric judgement to himself because its not his field of speciality!
So we are seing a new neurologist next week...he also start seing a clinical psychologist who works with kids....After only one assessment session the psychologist said she could see plenty of issues that needs work, that we have a great little boy.....She dropped bits and pieces of possible bipolar...or impulse control issues, we are having our feedback session the day after we see the neuro, because she wants to clarify neuro stuff first!
I wonder if your pead have ever heard of a child having more than one diagnosis!!!! Wonder why he is leaving...? Anyway, hang in there and dont stop until you find the answers you need....not want, but need....so you can know best how to help your child!

 

[TiredSoul]

Thanks whatamess and Insane!

Yes I did a parent report when I first found this site when difficult child was 5. I have kept it up to date. I have done so much research on my own I feel like I should have a PhD by now. Lol. It's exhausting.

Right now I am just worried about him becoming a psychopath. Just kidding - kind of. I read an article that freaked me out. I may start a separate thread for that.

I guess I don't want to admit it's just ODD. He does purposely annoy and bother people. He is manipulative and calculated and terrorizes his little brother constantly. He thinks people are out to get him and he will retaliate if someone wrongs him. He does have a lot of Aspie-like traits but not enough for a diagnosis. It's just something I always go back to. He will turn on the charm to get what ge wants. When he doesn't get what he wants he thinks we are being mean to him. He has low frustration tolerance. Everything irritates him. His affect is typically negative. But he can be super funny but not even know it. He is super smart.

I read about sooooo many kids just like this. I just wish we knew what it is. Maybe it's something that hasn't even been discovered. I mean is this really just ADHD and ODD?

 

[TiredSoul]

I forgot to mention... the doctor wrote a script for Strattera. This is the only ADHD medication we haven't tried. He said to go off the Intuniv and take both the Concerta and Strattera. He said he may just need two medications. If the Strattera works amazingly well then we could drop the Concerta. Any thoughts on this? medications freak me out. We have been on his current regimine for over a year.

 

[TeDo]

inconsistent eye contact, somewhat limited peer relationships, poor conversational reciprocity, limited imaginary play, a narrow focus of interests, behavioral rigidity, and a number of atypical sensory behaviors. I discussed with difficult child's parents that this constellation of symptoms is most consistent with Asperger's Disorder. The one bit of history that doesn't quite fit is that difficult child may intentionally annoy others at times, which would be more consistent with ODD. Still, the preponderance of evidence seems to suggest an Autism Spectrum Disorders (ASD).

Jules, I have been where you are. I can't find any test scores but difficult child 1 has ALL these things including the annoying others. BUT, until I changed MY way of looking at things, it became obvious that what most people call intentional weren't. That is the biggest disagreement I had with the school. Once we got the Asperger's diagnosis, sooooooo many things began to make sense and, being neurotypical for the most part, I can now usually figure out some of his "logic". difficult child 1 carried the ODD diagnosis for over 4 years before the Autism Spectrum Disorders (ASD) diagnosis came about. With the ODD diagnosis, we (the school AND I) did a LOT more damage. difficult child 1 was CONSTANTLY being punished for everything he did wrong when it was actually that he didn't understand or know how to do it right. I feel a lot of guilt now that I accepted the ODD diagnosis instead of digging for the WHY. Once we figured out why, life got sooooo much easier because most things can be headed off before they happen, Know what I mean??

I agree that only 1 hour with a dev pediatrician that didn't interact with difficult child was bad. The fact that he gave you the forms for the teachers to fill out as well is a good thing and maybe they will all verify what you've seen. If they do, that's better than what you had. Personally, I'll take Autism Spectrum Disorders (ASD) over pretty much anything because needed medications are minimal if needed at all, he can be taught the "correct" skills and you can even learn how he thinks to help him more productively.

Hang in there.

Addition: You posted while I was typing this. difficult child 1 has been on Strattera since he was 5 and it has worked wonders for us with no side effects after the initial couple weeks and even then it was lack of appetite but that went away. Stimulants sent him on what I call a "drug high" and that was painful for me to watch.

 

[InsaneCdn]

medications... well, given that medications alter brain chemistry, I understand why they freak you out. However... if I didn't have my medications to alter my brain chemistry, there's no way I can survive. difficult child kids have it even worse. medications are not a magic bullet. Sometimes they are worse than nothing - the side-effects can be beyond belief. But when they work well, they are worth every penny and every week of figuring out the right medications and right doses and right timing and right combo.

We're back in medications-adjust mode. Huge pain. But... no medications? for us, was 100x worse than the pain of working with medications and psychiatrists. That's just our story - others have seen the other side of medications. And... getting a bad psychiatrist means you won't get the right medications. The right doctor makes all the diff.

It is not unusual to be rxed both Strattera and Concerta/Ritalin or even Strattera and Dexedrine. For many people, Strattera doesn't provide enough, but does at least provide a 24/7 baseline that is better than the on-vs-off effect of the stims. The stims become the boost for daytime effectiveness. For other people, Strattera does provide enough.

 

[whatamess]

His negative affect may be depression or anxiety based because he is not understood and therefore going overtime to figure out the 'rules'. Because my son is verbal, people very easily mistake his behavior as intentional, but when he gets a negative response over and over and over and still isn't able to 'see' or change his behavior to be more socially appropriate, it becomes a bit more obvious that if he were not on the spectrum his behavior would be foolish/irrational/and not self-serving. When you say he is manipulative- does he get what he wants? Is he able to manipulate you? If the answer is 'no, he doesn't get away with it'. Then he isn't manipulating, he is very awkwardly (very Aspily) trying to figure out how to get his needs met (to him wants probably don't feel different than needs).

 

[TeDo]

Strattera ........ does at least provide a 24/7 baseline that is better than the on-vs-off effect of the stims. The stims become the boost for daytime effectiveness. For other people, Strattera does provide enough.

For us, the Strattera works for a maximum of 6 hours then it becomes OBVIOUS it's wearing off so he gets a smaller Strattera "booster" in the afternoon to help with evening activities. difficult child 1 is hyper again in the morning before he gets his morning dose. I wish it was a "take once a day and work until the next dose" kind of medication.

 

[BusynMember]

You know, I really believe, it is our verbal children on the spectrum, usually Asperger's or Pervasive Developmental Disorder (PDD)-not otherwise specified, that are seen as being intentional in their annoying of others, when from their perspective they are not doing it to purposely harass or annoy, it's because they are lacking insight and skills. Please don't let this doctor convince you it's ODD, that would be a huge disservice if your child truly is on spectrum.

I agree with this post 1000%. You can't just go by just the GARS for a diagnosis anyway. You need to see somebody schooled in Autism Spectrum Disorders (ASD) who will observe as well as administer many tests to Parents and Child. Often Autism Spectrum Disorders (ASD) kids are misdiagnosed in their early years as ADHD or ODD, but as they grow older and the problems don't get better (in fact they get worse but in different ways), it becomes obvious.

I prefer NeuroPsychs. They do 6-10 hours of intensive testing in all areas of function. That's a lot more more than just the GARS, although they administer that too (to parents). I wouldn't put much stock in teachers. They are educators and don't really know our kids very well. They have 20-30 kids to deal with and often are clueless about childhood disorders. Teachers either tend to think the home life must be awful or else that everything is ADHD. Experience talking here.

 

[TerryJ2]

Jules, this is the key point that stands out to me: I was never impressed. What a waste. He also does not buy into sensory processing disorder (SPD). He says it does not exist.


Wait until that person leaves. Find another doctor. Start over.
So sorry you are stuck with-morons!!!!

 

[TiredSoul]

For us, the Strattera works for a maximum of 6 hours then it becomes OBVIOUS it's wearing off so he gets a smaller Strattera "booster" in the afternoon to help with evening activities. difficult child 1 is hyper again in the morning before he gets his morning dose. I wish it was a "take once a day and work until the next dose" kind of medication.

I thought that is how Strattera is supposed to work - 24 hour coverage???

 

[TiredSoul]

His negative affect may be depression or anxiety based because he is not understood and therefore going overtime to figure out the 'rules'. Because my son is verbal, people very easily mistake his behavior as intentional, but when he gets a negative response over and over and over and still isn't able to 'see' or change his behavior to be more socially appropriate, it becomes a bit more obvious that if he were not on the spectrum his behavior would be foolish/irrational/and not self-serving. When you say he is manipulative- does he get what he wants? Is he able to manipulate you? If the answer is 'no, he doesn't get away with it'. Then he isn't manipulating, he is very awkwardly (very Aspily) trying to figure out how to get his needs met (to him wants probably don't feel different than needs).

The bolded part above is a good point. But his ODD behaviors seem very intentional and even planned out at times but his behavior doesn't change after getting in trouble. He doesn't learn from it. Or he enjoys it too much. Then he says everyone hates him.

For example when he is on the computer, everytime his little brother walks by difficult child will scare him. Little brother will scream and cry and difficult child will laugh. He does it over and over and over until little brother is so scared to even go near him. He will then go so far as to be sweet and nice and gain brother's trust again by having him sit next to him (which is all little brother wants anyway) and then he will scare him again or call him names or hit him. I just don't get it. It goes way beyond typical sibling rivalry. From the time easy child was a baby, difficult child would walk by and pinch him or slap him.

As far as being manipulative - yes he usually gets what he wants from brother but not usually me or Dad.

 

[TiredSoul]

difficult child had really good teachers last year. His homeroom teacher and sped teacher both suggested he could be on the spectrum but their ratings didn't indicate it according to the GARS-2.

Does anyone have experience with PCIT? Or thoughts about it?

I also wonder if since Strattera is a SNRI if it will help with depression/anxiety.

 

[whatamess]

If I were to look from a Autism Spectrum Disorders (ASD) point of view at the behavior and reaction of your son treating his little brother in such a manner, I would say he is either 'stimming' on the reaction he gets from little brother (it's predictable, he controls it= very empowering) and/or he doesn't want to be bothered by little bro and has figured out a successful (from his point of view) way to get little bro away from him. I am not condoning being mean to little brother, but it might be simply that he wants him away for any number of reasons and has found the most success in that immediate moment by scaring him.

 

[TiredSoul]

If I were to look from a Autism Spectrum Disorders (ASD) point of view at the behavior and reaction of your son treating his little brother in such a manner, I would say he is either 'stimming' on the reaction he gets from little brother (it's predictable, he controls it= very empowering) and/or he doesn't want to be bothered by little bro and has figured out a successful (from his point of view) way to get little bro away from him. I am not condoning being mean to little brother, but it might be simply that he wants him away for any number of reasons and has found the most success in that immediate moment by scaring him.

Good point. Yes he does want little bro away from him because he asks too many questions and talks too much and it annoys difficult child.

Another thing is it is nearly impossible to get him out the door even if its somewhere he wants to go (transitioning?).

Also he is an extremely picky eater. Will eat close to nothing but the same kind of cereal for months.

He doesn't want to shower because he says he hates being wet. He always tries to put his clothes on without drying off completely. He says it hurts to have his hair combed and hates having his face washed. But clothing does not bother him. He has never noticed tags or seams. He will put his clothes on backwards or not notice when his shorts are twisted etc.

 

[whatamess]

Oh My Word! Any professional versed in autism should be running to diagnose this child with an Autism Spectrum Disorder based on what you are saying in this thread.

 

[TiredSoul]

Oh My Word! Any professional versed in autism should be running to diagnose this child with an Autism Spectrum Disorder based on what you are saying in this thread.

Everything I am stating here I told to the doctor. Maybe the GARS-2 just isn't the right tool for us. The first appointment he really did feel it was Asperger's. Yesterday's appointment after scoring the GARS and talking about difficult child bothering his brother he was convinced it's just the ADHD/ODD --even though I discussed the food/shower/hygiene issues. I specifically asked about other disorders ADP, sensory processing disorder (SPD), and Pervasive Developmental Disorder (PDD) not otherwise specified. He said nope. He said after the medication change and trying PCIT if he still were thinking Asperger's then to come back and see someone to administer the ADOS. I am so confused.