Anyone ever have doctors disagree with one another over your child's diagnosis?

[DisKim]

Hi! I thought this would be a good place to ask this. To make a long story short, my DD14 was diagnosed with ADD in 1st grade. She managed it well until this year when she had some trouble with her school work (she was a straight A student from 2nd to 7th grade). I started taking her back to a slew2 of doctors. They all agree that she has ADD and they medicated her for the first time. Now, where they differ is in the other diagnosis. The developmental pediatrician vehemently stands by her diagnosis of Asperger's. Her psychiatrist and therapist agree that she does not have the disorder. Her younger brother has ASD, so I'm pretty familiar with autism at this point. Other than a lack of empathy, I just don't see the possibility of Asperger's in her. My question is has this happened to anyone else and how do I move on from here? I handed the new diagnosis to her school. That didn't really do anything.

 

[bookwormde]

Psychiatrists are not trained in and typically have almost no competency in ASD and Aspergers, since they are trained in the "disease model". about 50% of developmental pediatricians have reasonable competency. Aspergers and ADD are not metal illnesses so the Developmental pediatrician has the higher level of training (psychiatrists typically just do damage to our kids).
bookwormde

 

[Maggie'sMom]

I haven't dealt with a disagreement over a diagnosis, but if I were in your shoes, I would seek out another opinion.

Since your DD did well managing herself in 2nd through 7th grade with an ADD diagnosis, and is now at age 14 experiencing new problems, I can't help but wonder if it's more related to physical body changes or regular emotional changes that come with adolescence. You didn't mention specifically what things she is struggling with. I guess I'm a little wary of a new Asperger's diagnosis at age 14. I'm not saying the Asperger's diagnosis couldn't be correct, but another opinion might be in your DD's best interest.

 

[deerhart]

BTDT

With my oldest, his SLP stated clearly in her report that he was classical autism. We took him to a developmental ped who said he was probably PDD-NOS but couldn't explain why. We had a psychiatrist who ruled out autism and said he was ADHD and mixed expressive receptive speech delay. We ended up with a behavioral neuropsych who ruled out autism, ruled in both the MERLD and the ADHD-HI and said there is something else going on that we can't diagnosis. We added an additional dx of CAPD 8 months later.

I force each and every doctor to give me a thorough explanation of the dx, INCLUDING how my child's exhibited behaviors meet the dx criteria of the DSM IV. I can do this because I know how to work with the DSM IV and what the criteria are etc through my job. If the doc cannot explain to me how they got their dx in a rational manner that doesn't include the terms well he acts like toher kids dx with it, well other kids I have seen dx also have this, or even more off the wall, like well that part of the dx isn't important or well we could just squeeze his hyperactivity in as a self stimulating behavior (sigh), then we take the new information we have gathered, digest it, and basically keep going and downplay that doc's dx.

When you talk about lack of empathy what exactly are you meaning? Is it that she shows no emotion or understanding of someone else (no theory of mind) or that she doesn't seem to react to other people's emotions? The difference between the two can really be hard to differentiate especially if your an extrovert type personality. Many introvert's seem to lack a lot of empathy because introverts do not gain energy from people, they gain energy from being alone. Also, many introverts social skills are below average because again, people make us (I am an introvert as is my eldest son) wore out, cranky, and at wits end. I often find myself trying to deal with people and not knowing what to say because they are extroverts, over emotional, and looking to me to feed that need and I (being the logical untactful self am biting my tongue to NOT say something to make it worse).

As for a new dx at age 14, its actually very common for the aspie label to come then. This is because this because between the ages of 10/11-15/16 is the time when social situations really start to get complex and those aspies who were able to muddle along and compensate enough with the less complex social situations will really start to fail now (hormones, romance, cliches, peer pressure, adulthood all spring up now). In fact, our neuropsych warned us that our oldest wouldn't be 100% clear of a possible ASD dx until he reached roughly 15 to 16 years old (at the time his social skill delay was considered moderate not severe, thankfully the CAPD dx and treatment did wonders for him and we aren't anywhere close to an ASD dx anymore).

 

[bookwormde]

I agree it is very common for an Aspergers diagnosis does not to occur unil the teens, especially for females.
I would suggest if you have not already to get a copy of Toney Attwood's "The complete guide to Aspergers" which is available on Amazon for $17. It is the primary work on the subject.
Once you have read it you will be much more able to have informed conversations with the clinicians. If you find out that the Psychiatrist or Therapist have never read it or do not grasp the concepts it includes then this is usually a 100% indicator that they are not competent and have no real training and understanding of the area.
It is also important to remember that Aspergers and more classic ASD present very differently so making comparisons is risky, also males and females present significantly differently also.
Bookwormde

 

[DisKim]

Great information! Thanks everyone!

I guess I should give more information. I have also thought that my DD could be exhibiting behaviors as a result of body changes. I have an appointment with a neurologist for her in August to get yet another opinion. As far as a lack of empathy, she doesn't have the ability to see things from the point of view of others. This could be just her being a teenager. She is not flat. She is actually quite animated and funny. I think the main thing the developmental pediatrician noted was the fact that I reported that she has been isolaing herself in her room and she talks constantly about anime and manga even if the listener is not interested. However, her friends are just as obsessed with these things as she is; perhaps even more so. I think I bought into the diagnosis at first, but now I am doubting it.

 

[bookwormde]

Reduced social skills and not being socially driven are definite indicators, as are areas of special interest. Typical aspies want to absorb everything they can about their special areas of interst and share with others whether the recepient is interested or not. TOM (Theory of mind) is a central deficit for Aspergers, although many of our kids develop an itellectual ability to "read" other people, but in complex or unfarmiliar situation it often becomes overwhelmed.

There is a really good computer program form Cambridge university call mind reading which if you want to improve her skills in this area you might want to purchase ($120)

bookwormde

 

[DisKim]

I will definitely look for that program! I have gotten into "conversations" with Aspie children plenty of times between taking my ASD son to therapy and going to different functions in the autism community. There is a level of absorption that she doesn't seem to have. I have even tried to speak with her about it. I have nicely said that anime is not really an interest of mine and asked her if she can tell when I am not part of the conversation. She said she realizes it, but thinks that if she keeps telling me about it, I'll learn to like it. She only seems to do this to me. I don't see her getting into these one-sided conversations with anybody else.

I guess the thing that is really freaking me out is to get a diagnosis like this at the age of 14. What the heck am I supposed to do with it? My DS5 was diagnosed with ASD at the age of 2. Right away, I went to work. He had every therapy you could think of. I put him on the GFCF diet. The list goes on. Apparently, it did him good because he is really doing well. No one has told me what I am supposed to do for my daughter. She is going off to high school next year and I am worried about repercussions for her future plans.

 

[bookwormde]

Giving her the opportunity to learn about herself and why she has amazing gifts and frustrating challenges is the best thing about being aware that you are an aspie, whether you formally cross the line to a diagnosis on not, at her age and since she has self adapted to a great extent the formal diagnosis really does not amount to much beyond that.

bookwormde

 

[DisKim]

bookwormde - That is exactly what I have been trying to do with her. I am trying to teach her to accept herself and embrace the gifts and the challenges. It is just difficult after having such a "warrior mom" approach with my ASD son. Sometimes, I feel like I'm not doing enough.

 

[bookwormde]

It is a big battle to change society to stop discriminating against our chldren, each of us just takes a small piece that helps our own kids. and go from there.

bookwormde

 

[deerhart]

teenage girls isolating in the bedroom really isn't that uncommon. Heck that was the principal way I dealt with my house from about 12 to 16!

Again it cane come from a variety of different things, not just an ASD.

I think part of your issue is that things are changing with her and she doesn't feel connected to YOU. She's trying to strengthen your connection by trying to get you interested in something she really loves. It's not an ASD trait if she only does it with one person, especially since she realizes she's doing it and she continues not because she can't see when to stop but for other reasons.

I think the question to ask her is why is it so important to her that YOU like anime?