Verbal feedback from neuropsych...???

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Registered: 05-28-2004
Verbal feedback from neuropsych...???
9
Wed, 03-14-2007 - 5:46pm

Now I am angry, and I need to put that aside to focus on what matters to my son.

(Deep breath...)

I do not have the written report yet, but a neuropsychologist and some associates have seen a lot of my 5 1/2 year old kindergartener. I introduced him as Asperger's, which I think is the easiest one-word way to describe his ways of interacting with the world, but he is, of course, an individual.

DH and I sat down. One of the first things the NP starts with is, "Let's first discuss what he does not have. He does not have anything as scary or horrible as Aspergers or any ASD. I do not agree with Dr. X who diagnosed that." Now, I do consider both of my children ASD, but I really don't care what the NP calls "it." I had the presence of mind to say simply, "I'm not scared of ASD's." The NP continued to say that he didn't have one, and I did manage to drop the "scary" conversation and askd what he did find.

The NP said my son is a smart guy, and I didn't ask for the actual cognitive scores because it hadn't occured to me at the time. I did know that historically, he tests a flat average on educational evals, but my Mommy intuition is that his skills are far more mixed than that. Many people assume he is very bright. Yet some things seem strangely difficult for him. The NP feels that he has a serious language processing problem. He scored in the 2%ile on a test where he listened to a story and had to give back details, but in the 84%ile on a test to remember visual details. That part of the interview pleased me, because it confirmed my suspicion that his cognitive functioning was not a simple kind of average.

Then the NP went on to say that he definitely had attentional issues. He said that his ability to pay attention was significantly lower than his peers, and that he would recommend following that at least yearly. If he drops off farther, that would be a problem to treat, but if he just stays steadily behind and keeps making progress, that would be okay. Also, my son is a little ahead academically, so he is learning around his attentional differences.

He said that he has serious social issues. He gave me numbers for social skills group leaders that he thought would benefit my son, and basically said that it would be better than bothering with the school because there is no way to ensure quality in the school program. He also said that doing such a thing privately would mean that the therapist or whomever is running the group could also work with us (parents) and give us strategies for teaching social skills.

He said that he has definite motor issues. He said that he does not have orthepedic issues, so really both/either OT and PT benefit him, it matters more who the therapist is than what the area.

He thought that the level of services on the IEP is appropriate. This is a great relief for me, because I really feel a lot of Mommy guilt about his program. He felt that the S&L goals do not address my son in particular, and that he would recommend changing them. But the level of service is fine, to the NP.

So in the end, he thinks my son is a boy with attentional issues, processing issues, social issues, and motor issues. Then he added it was not a "horrible, life-long" thing like an ASD. I asked if he thought that he was going to grow out of the processing problems or the motor issues, and, getting the question, he said that my son does not meet the criteria for Aspergers because he does not have sterotypical behavior like hand flapping, and you must have such a behavior for the DX. (When I looked it up, I saw that that is not true, one must have a steroypical behavior or any of a number of other things, but...) I said that I felt he has a very stimmy need to touch skin, touch our belly-buttons, etc. And he said, "Well you just need to be more firm with him." Yeah. That will change everything.

I said that I also thought that Aspergers was a good fit because he gets stuck in certain solutions and he can't change. The NP agreed that he is not a flexible probem-solver, and he did not try new ways to solve problems, even when the old ways were not working. However, he said that he can't be ASD because he cares about the other kids, he is not socially indifferent like ASD kids. I said that I don't believe all ASD kids are indifferent to their peers, but some are clueless as to how to deal with them. The NP told me that my son has clear social issues, but that children have to be indifferent to other children to get the DX. (I didn't need to double check the DSM on that one! That's just wrong!)

Then, somewhere in the conversation, while I was reeling with anger about the socially indifferent characterization, he blurted out "Dr.s don't do that." He meant that Professionals "know" that ASD kids are indifferent socially, and that "Doctors" who are apparently different from us "humans" would not break the DSM rules and make such a wild DX. As if he were right about that being in the DSM. As if the DSM were a completely objective manual, and there were no disagreements. And as if and there were only one correct answer for each set of symptoms. Well, he was being a complete snob about being a Doctor, when in fact, if his job involved no opinion or judgement call at all, you could train a monkey to do it! Why doesn't he just take credit for his opinion, for example, by saying, "I would call a child like this a boy with social issues, processing disorders, motor disorders, and attentional disorders," instead of disrespecting the word autism?

Now I'm furious. My feelings are hurt because I think that the NP is making sweeping, rude and inaccurate generalizations about ASD kids, a group I believe both my children belong to.

BUT...if he were respectful to ASD's, I would have no trouble accepting his way of describing/diagnosing my child, at least as I've heard about him verbally. It's not like I need him to call "it" Aspergers or anything else. I just want another set of eyes on "it" and another opinion about what to do about "it." So I am trying to wait for the report, and use it on its merits, and not get blinded by that snotty NP who needs to dust off his DSM, check on what it does and doesn't say, and take credit for his own opinions and judgement calls.

Thanks for listening...

Sidney

APOV on Autism
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Registered: 06-25-2003
Wed, 03-14-2007 - 8:15pm

(((Sidney))),


I'm sorry the experience was so negative for you.


Was the neuropsych young or old?

-Paula

visit my blog at www.onesickmother.com
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Registered: 05-28-2004
Wed, 03-14-2007 - 8:24pm

Thanks for the hugs.I

have a wild 2 year old in =my lap, so forgive the typos...

The NP looks young, maybe late 30's early 40's.

Si===========

Sidney

APOV on Autism
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Registered: 09-09-2005
Wed, 03-14-2007 - 10:06pm

((((HUGS))))
I had a similar very negative experience the first time I had Liam evaluated by an NP. The NP was older (in his 60s'), and was a legend at Kennedy Krieger. At the time I was in mild awe as I had no clue what I was doing really. He still said ADHD and poo pooed an ASD, all because Liam didn't hand flap or have other more obvious stereotypical behaviors (even though he echoed, hand specific movements etc- of course Liam didn't do them there!) What is scary is the Dev Ped backed up the adhd dx; obviously also in awe of this decrepit legend.

Now I know better, just as you do; this guy wasn'y God and 4 hours of testing wasn't enough to change 40 years of stale experience.

We ended up getting a correct dx from of all places the school district here. Trust yor instincts; use the scores at least to get a better understandingof your ds's strengths and weaknesses. That's what I use the NP report for now; although since Liam turned 6 his new scores from the school are more accurate.

Dee

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Registered: 05-28-2004
Wed, 03-14-2007 - 11:20pm

Dee,

I just restarted a bit of google research on my NP to try to guess an age, but I really can't except to say that he does not get "hits" that I have found before 2000.

Of course, personal information about NP is not important. I should just wait for the report and see what it says. It might be what I need to know to understand my son better. It is just that he was so rude!

What makes these High-on-themselves NP's so in love with hand-flapping?

What also eats at me is I bet he thinks that I am trying to dictate what he says. I am just wishing for a little empathy. In his field and with his level of education, he should have some clue that calling something I consider to be part of my son "horrible" might hurt my feelings. I also don't get why he has to invent his own version of the DSM-IV instead of admitting to having his own professional policy as to what he calls Asperger's.

And a few things made me trust him less, such as the way he asserted that something that is not in the DSM is in there, and telling me I could "check" if I want to. It made him seem 16. (No offence to the real adolescents out there.) I really need to trust him because he said that my son's level of service was fine, and if I don't trust the report, it leaves me without the luxury of being reassured by it. I hope the report feels credible to me when I read it.

I am trying so hard to focus on the fact that the report will probobly have good information. I certainly do agree that my son has social, attentional and motor issues, and I am interested to learn more about possible processing disorders, which I had never heard of or thought about until this evaluation, and I think that they may really help explain some difficulties in verbal situations. The assessments from my son's school are really very superficial.

Nobody has ever said or DXed ADD for my son, but I do think it fits as part of the picture. (Not ADHD; his little brother has all of the H in the family.) But I am not certain that ADD dx will help because IF he becomes a problem at school, they may begin to wish I persue a perscription. I would not want a stimulant for my son in part because he already does not eat. I don't think I have to worry about that yet, because the NP did not think it needed treatment, and my son is no problem at school.

How old was Liam when you got his NP?

Roan is so beautiful! I have to admit I felt a bit of an urge for 3 when my 2 year old became the age my five year old was when I had him. But no way for me. How do you do it? I am sooo in over my head with two!

APOV on Autism
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Registered: 03-26-2003
Wed, 03-14-2007 - 11:57pm

Well it is nice to know he knows more than the DSM now isn't is. I just LOVE (note sarcasm) when docs figure they know so much about autism that they can make generalizations based on one or 2 of the symptoms. "he can't be autistic, he makes eye contact", "She can't be autistic, she is too connected to her family".

Autism (and aspergers) are a set of criteria that are observed. There is no one criteria that HAS to be met but they must meet a certain number within each section. No where does it say that an autistic HAS to stim or do stereotopies, no where does it say they have to be totally aloof and disconnected. Many of the exact issues this doctor pointed out are very much within the norm for kids on teh spectrum.

I was having a conversation with DH and a freind about this very thing. Autism isn't so much the outward signs, it is more how a person processes the world. Yes, very often there will be stimming or something similar but it is not a neccessity.

In fact, I think it is easier when the person or child has outward signs like stims. The public in general are more understanding of these kind of behavior (oh, that child has special needs) rather than the child who mainly exhibits perhaps behavioral and social challenges. Then the disability is more invisible and that is often harder on parents and the individual.

My son turns heads. He has alot of stims (somehow he managed to stick mainly the vocal ones for Debbie but he has many others). Tonight in Karate he was doing the full body flap and even his sensei made a comment to him. But when he does that people go, oh he is special needs, and are more understanding. However, my dd can pass as more typical usually. If for some strange reason she has a problem or doesn't listen it isn't as easily understood. It can make it quite hard on her.

Ya know, if your doc would be diagnosing Cait and she was having a good day it is likely he may not DX asd either. But she definitely is. She has learned many coping strategies, but rarely stims anymore. She finally in 6th grade started to get some friends and her and I are bestest buds. She is so much more outgoing in the past 2 years and loves to meet and talk to people. Not aloof (though she used to be) but she is still autistic. She still processes the world like an autistic and needs supports.

If I were you, I would look into a second oppinion.

Renee

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Registered: 11-28-2006
Thu, 03-15-2007 - 1:46am

Don't give up, don't give up, don't give up. Go with your gut, as your gut is most always right. Especially if your a mother.

Lots of us have to get 2nd opinions, or 3rds, 4ths etc.... Keep on fighting with your child and put aside what this NP said.

Let it go, and find another to get an eval.

I was pizzed at my first doc, and now I'm going to another for a second. This time its at a University that has a Autism Clinic and Research Dept.

Good luck :)

Lainie

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Registered: 05-28-2004
Thu, 03-15-2007 - 1:30pm

Dear all,

Thanks for the support. I am not sure why this has me so frazzled, but it does. It means a lot to me to have a place to "talk" about it.

Renee and Laine, I do feel in my gut that my son has an ASD. I also think that I had never completely captured or was able to verbalize his differences, and I think that the NP may have found a good chunk of the rest of "it" in the auditory language processing problem. I still think that only ASD explains his quality of the difference in his social skills and interactions. (For example, he backs-in for hugs, wants to touch skin, doesn't look at faces, can't read them if he does, can't read gestures, talks at people.) I don't think that those are the kinds of social errors made due to attentional differences (but I don't argue that he has attentional differences.)I also think that his inflexibility is better explained as an ASD. What else could it be? The NP called his throat-clearing (which is not that frequent but a stim in my opinion, and present under stress) a possible tic. And he also certainly has senory integration issues, which I suppose could be a separate thing, but...

Oh, I also did the CARS on him )without a licence), and he comes up a few points to the left of the moderate/severe border.

I am not sure that I really need a second opinion unless my school wants to change his program in a way I disagree with based on this.

I haven't seen the report yet, so that may help me feel better, or may be my next crisis.

It is beginning to sink into me how low 2%ile is. Yikes! That's disabling! How is my son learning anything? I need to see the report.

Thank you all. It helps me a lot to me to have this board.

Sidney

APOV on Autism
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Registered: 09-09-2005
Thu, 03-15-2007 - 9:46pm

Liam was 4.11 so he was right on the bubble of the preschool evals and the early elementary evals (probably why his IQ was off the charts then, lol). I do belive so many of the these NPs, dev peds etc can get stale/stuck, as with any doctor. If they get one mentor who is an old stick in the mud it's hard for them to get beyond that ancient attitude.

I think the fact that you are questioning his behavioris a credit to you as a Mom; so many others would accept everything that spouted fom his mouth, sight unseen. Stiil, I do hope the raw infor (scores etc) will help add to his IEP/services.

Dee

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Thu, 03-15-2007 - 10:05pm

That is interesting. I remember my son's OT telling me NOT to get any OT evaluations until he turned 5, because she said that he'd test nearly normal for an under 5 year old, but show more of a deficit after his birthday. So timing does matter. However, I have a feeling Liam is, among other things, very smart!

I have a family trainer who also has autistic kids. She was at my house today, and I found out that she had had a very similar experience with the same NP, except it was flipped around. Since the child she brought did hand-flap, he pronounced her son "autistic" with all of the horrible connotations the NP brings, and made her feel like she should be planning on putting him in an institution, when she really came to help plan her son's early elementary years. She said she had never felt hopeless before that, and has managed to not feel hopeless since then, but that NP made her feel hopeless.

What a dolt.

I'm going to attempt to chat.

-Sidney

APOV on Autism