How important is the diagnosis?

[DaisyFace]

Hello All--

As you may know, my daughter, difficult child, was diagnosed with ADD (despite having no symptoms of ADD), ODD, and more recently Depression and Anxiety.

When she was little--I suspected Aspergers...but my theory was dismissed almost immediately because doctors said difficult child's eye-contact "seems fine". She was instead tested for auditory problems (which they found) and then termed ODD/ADD (plus ineffective parenting) for lack of a more specific classification. I always felt that it was kind of a bogus diagnosis because it really tells us nothing. Anyone could she that she was being difficult--'ODD" doesn't begin to tell us why.

At any rate--since trying the techiniques in "The Explosive Child"...we have made a remarkable discovery. difficult child's entire day is run according to a pattern in her head. That's why she won't do dishes or other chores when asked...she has to go through a whole pattern of activity first. It's why she fights about what to wear...or what to eat...or what game to play--anything that doesn't go according to her "pattern" leads to a total meltdown.

Who knew?

Her patterns are not as obvious as simple rituals (like you might see with Obsessive Compulsive Disorder (OCD)) or lining up toys. Instead, it is as though she moves through her day according to a complex choreography designed to help her handle different situations. AND she has terrible social skills. AND she has no empathy. AND she does not know how to interact appropriately--always too rough, too aggressive, etc. AND if you disturb her pattern--[Kaboom!] !!

So, in my opinion, this is indeed, Aspergers.

My question is, how badly do I need that formal diagnosis of Aspergers? The ADD/ODD and Depression/Anxiety is incorrect...but at least it is on record that difficult child has issues. I had difficult child take an online Aspergers/High-Functioning Autism (HFA) screening test...and she scored well-within range for a diagnosis of Aspergers (but of course, those sorts of tests are 'unofficial').

Should I be trying to find a psychiatrist who would be willing to test for Aspergers? The current psychiatrist is happy with the Depression diagnosis and just wants us to work on a better discipline/rewards program with difficult child to control her behaviors.

Thanks for any input--

DaisyF

 

[allhaileris]

I'm kind of in the same place you are now (but at a younger age, E is 6), thinking my daughter has Autism Spectrum Disorders (ASD)-Pervasive Developmental Disorder (PDD) and we've just started a new round of evaluations. A lot of people have brushed me off saying that no, she can't have it, but I think she's just at the top range. Her teacher this year has a child herself that is high functioning Autism Spectrum Disorders (ASD) and agrees with us. Just Wed husband took her into the therapist at our local regional center and she showed husband a chart with different behaviors, husband said everything except a few and the therapist said she indeed may be high functiong Autism Spectrum Disorders (ASD). Now we just have to wait a couple more months for the full evaluation to take place.

For us I think it's important for her school to have the correct diagnosis for services. We are lucky that we didn't have to fight for continued therapy & aides with her recent IEP, they really know she needs to stay in that system. But, to have the correct diagnosis will help them more. Right now she phased out of needing it for a speech delay, but they kept her in for an undefined learning disability.

She was originally diagnosed with ODD, and I think they just slapped that label on her because "they" weren't around her enough to see the strange behaviors at home. Like yesterday morning when we were getting ready to leave, husband got upset at E for something, and while she waited by the door for us she sat and lined up and matched all the shoes.

I think once you have the correct diagnosis, it's better because you can move foward and hopefully stop fighting the system.

 

[gcvmom]

So has she ever had a neuropsychologist evaluation? Maybe that's where you should start rather than trying to convince the psychiatrist otherwise. Depending on the outcome, it could open the door to services like a social skills class or some other kind of therapy to help her cope better.

I think you can have a type of Obsessive Compulsive Disorder (OCD) without it being the "classic" kind. It still a form of anxiety. My husband definitely has issues in this area that get really bad off medications.

 

[DaisyFace]

So has she ever had a neuropsychologist evaluation? Maybe that's where you should start rather than trying to convince the psychiatrist otherwise. Depending on the outcome, it could open the door to services like a social skills class or some other kind of therapy to help her cope better.

I think you can have a type of Obsessive Compulsive Disorder (OCD) without it being the "classic" kind. It still a form of anxiety. My husband definitely has issues in this area that get really bad off medications.

No, she has not had a neuropsychologist evaluation...

Right now, difficult child is in weekly therapy sessins to deal with her 'Depression', but the therapist is not seeing any sorts of changes. I asked the therapist about a neuropsychologist evaluation to make sure that difficult child was being treated for the correct problem--but the therapist said she was unable to give us any information about neuropsychologist testing and said that any recommendation for that sort of thing had to come from a pediatrician. (And naturally, the pediatrician was the one who had referred difficult child to this particular therapy group for help in the first place!)



--DaisyF

 

[Wonderful Family]

[quoteHer patterns are not as obvious as simple rituals (like you might see with Obsessive Compulsive Disorder (OCD)) or lining up toys. Instead, it is as though she moves through her day according to a complex choreography designed to help her handle different situations. AND she has terrible social skills. AND she has no empathy. AND she does not know how to interact appropriately--always too rough, too aggressive, etc. AND if you disturb her pattern--[Kaboom!] !!

Could you describe the "complex choreography" that you mentioned? I've seen this with my son. Do you perhaps means the ability to completely mask emotions so that they look normal unless you know what to look for? difficult child gets better with this by the year.

medications did definitely stabilize him; but I often wonder if there isn't some autism in there. He is in therapy to help with what I describe as "autistic-like" traits since I couldn't figure out another way to help with all the other stuff and traditional counseling was like throwing money in the trash.

 

[Janna]

I can tell you from recent experience that you have to answer so many questions out of so many questions from this specific test to receive a formal diagnosis of Aspergers (I can't even recall the name of the test without looking, I apologize, but it wasn't online). D would have had to meet 15 out of 25 or 30 questions we took to get a formal diagnosis, and got 14 of the 15 LOL! Ridiculous.

I have heard Asperger diagnosis'es are very, very hard to get. Even moreso than Pervasive Developmental Disorder (PDD)-not otherwise specified. We are still working on getting D's "official" diagnosis. He's sitting now with what's in my signature - so yeah, he's Aspie, sort of LOL!

I need the Autism diagnosis'es for school supports. So, for us, it's pretty important. But, if he was 17 and almost on his own, you know - I wouldn't worry SO much.

I used to worry and worry myself sick over diagnosis'es until I realized that every single doctor is different. Seriously. I have had my kid at 2 very highly qualified doctors at the same time (one a psychiatrist, one a neuro) - one said Autism, one said no way, he's Bipolar. LOL! Same time. Whatever....

It's now that I have FOUR doctors saying Autism and one that said Bipolar that I say, ok, it's Autism. As he gets older, too, it's clearer. When he was 6, he looked like he was crazy. I dunno what we would have called it.

I think it's a constant work in progress, you know? Things can change so much over time. What looks like one thing on a 5 year old may not look that way at 10.

Side note: D is the same way with routine and such. He has NonVerbal Learning Disorder (NVLD) (Non Verbal Learning Disorder). Everything here is on a chart, in a picture, written down, from his daily routine, to his chores, to his diet. Everything is on a Dry Erase board LOL! If we take it down or change it, he goes down. His world ends.

 

[jal]

I think the diagnosis is important to get the right services for your child. Our difficult child has been diagnosis'd BiPolar (BP) and ADHD medications do not work. Just diagnosis'd yesterday as Pervasive Developmental Disorder (PDD)-Asperger's which we agree with. He is going through one more evaluation currently and if that psychiatrist agrees with yesterdays then I am calling an IEP to have some things changes. I also think difficult child has Sensory Integration Disorder (SID) and right now the school is doing an Occupational Therapist (OT) evaluation for that.

I would go the neuropsychologist route too instead of trying to get your dr to change his/her mind. difficult child's original psychiatrist said he was 99.9% sure difficult child was BiPolar (BP) & ADHD- even though we weren't feeling it.

 

[DaisyFace]

Could you describe the "complex choreography" that you mentioned? I've seen this with my son. Do you perhaps means the ability to completely mask emotions so that they look normal unless you know what to look for? difficult child gets better with this by the year.

Whenever doctors asked us about patterns...does your child line up their toys, or arrange things a certain way, or move in a particular way--our answer was always "NO".

However, when we began using the techniques from "The Explosive Child"...we began to notice patterns. For example: Every evening, husband will say to difficult child 'Please do the dishes'. At that command, difficult child will spend a few moments staring into space, then she will use the bathroom, then she will disappear into her room for a few minutes, then she will play with the dog...and then, and only then, will she find her way into the kitchen, where after another few minutes of staring into space she will finally actually wash the dishes. However, if the dishes are out of order in some way (like someone finds an extra glass in the living room after she has already finished the glasses) she will get very angry, sometimes even having a bit of a meltdown.

Obviously, we had interpreted this behavior as "avoidance" or "defiance"...since it looked like she found a million other things to do instead of what she was asked--but once we decided to watch her behavior without judgment, we noticed that the routine never varied. She did the same things in the same order every single night before doing dishes.

And once we recognized the 'wash the dishes' routine...we began to notice other rituals as well. She has a ritual for getting dressed in the morning...a ritual for after school...and each ritual just looks like a kid wasting time, or doing the opposite of what you request--which is why we never recognized any of it as a ritual.

And before the Celexa...difficult child used to be in a constant state of irritation or mild anger. So she would walk (or stomp) around the house grumbling to herself as she went through these routines. Which, of course, would aggravate us to no end and leave us repeating our request in louder and louder voices. "Please do the dishes. Please do the dishes!! PLEASE DO THE DISHES!"...meanwhile...difficult child would be muttering to herself and playing with the dog.

So now that we have a better idea of what we are dealing with...it is SO much easier to understand that what she is doing is not being ODD--she just doesn't have a better way of moving from one task to the next.

Are there really services that help teach these kids better ways of dealing with life situations?

 

[Wonderful Family]

The therapy we are using for difficult child is a variation of Floortime developed by Greenspan, I believe. Most of what you can see if you Google it is focused on young kids; but the concept is pretty much the same. Teaching difficult child how to handle himself in different scenarios and recognize his emotions. The thought process in general appears to be that they never learned the levels between nothing to extreme. We've only been doing this for a few months; so we'll see how it works. I'm giving it 6 months before I think we will see much or be able to decide if it's valuable.

The therapist says he's never seen a kid as wary as difficult child; very little trust with anyone. At least he "gets" difficult child. Therapy is supposed to benefit both BiPolar (BP) and austism. I haven't said much about it on the board just yet because I still not real sure where it will lead. difficult child doesn't mind seeing the therapist.

 

[BusynMember]

Oh, I think it's important. When son had BiPolar (BP) diagnosis, they loaded him up with medications. That didn't help him because he's Autism Spectrum Disorders (ASD). Now he's gotten tons of Autism Spectrum Disorders (ASD) interventions and has improved 90%. In spite of that, he sitll may need an assisted living apartment as an adult so the diagnosis. is important even into adulthood. Certain diagnoses don't get you much help so I do think it matters. A lot. If son needs assisted living, he also gets job counseling and coaching and somebody to check in on him a little bit. This is the degree of services I feel he will need. But he won't get them if his diagnosis. is "depression' or "ODD."