Scratching my head over hear.......

iVillage Member
Registered: 11-28-2006
Scratching my head over hear.......
7
Fri, 04-06-2007 - 3:22am

Hi guys,
I took my son for a second opinion the other day to Stanford. Just to
let everyone know in case they forgot or are a lurker, my son first went to see a
physcologist and was dx'd with

Dysgraphia,
Visual Processing Disorder
Thought Disorder
Mood disorder (first wanted to say bi-polar but I disagree)
And "traits" of Asperger Syndrome

Anyway, last tues I got up at 3:30 in the morning, got my boys up a
4 and took off for Stanford. I dropped my younger one off at a
friends on the way and my son and I took off for Stanford.

The doc (Physcologist I believe) met with us for about an hour, asking
us both questions. Then he met with Christopher alone for 20 min,
then me alone for 20 min.

When he met with me alone I got another "Traits of Aspergers" but not
a full Dx.

Well this is wear I scratch my head....

This doc at least gave me specific reasons to why.

His obsessions aren't ODD enough lol. He said if my son had obsessed
over telephone polls constantly for years, then yes he would have
Aspergers. (My son obsesses over money, business and numbers. I mean
for crying out loud he can't stop picking out the numbers off busses
when he sees them lol)

He said obsessions usually don't change, but my sons do. He will
really be into the money thing (will go thru my wallet every chance he
gets, counts my money, talks about my money, begs to just hold my
money and will organize my wallet), but will also obsess over yu-gi-oh
stats. He will talk about stats all day long non stop. And then
maybe a new video game or lego comes out and that will all he will be
able to talk about non-stop.

He said things like yu-gi-oh and such are very age appropriate for him
(he's 11) so thats normal. Well yes its normal, but his range of
obsession is completely different from your average NT kid.

He said obsessions usually get better not worse the older you get. I
told him I thought his obsessions were getting stronger (but that may
be because were going thru major rage issues's and major OCD issue's
lately and sometimes I really do think I get these things mixed up as
I have only been learning about all of this since last Oct)

He asked my son what the definition of friendship was and he couldn't
tell him, (which he said was a bad thing ie.... leaning towards
Aspergers) But then he asked him what the difference between alone
and lonely was and my son could answer, which was a good thing.

I mentioned that my son really needed help with his pragmatic speech
and he agreed (in fact he totally agreed that my son needed help, but
just doesn't have the dx)

If he doesn't have a DX, then what the hell is it????? I need to know, I need a final dx for this. I need to understand. Is it NLVD, is it soemthing else? Just tell me for god sakes....

Anyway sorry, going thru my own confusion and frustration here lol.... ANYWAY...

There were a few other things he said, but you know I have researched
and joined groups and talked with parents on the phone until my mind
can't think anymore. I have this mommy gut, and I can't let it go.

I said you know some of the things you say arn't what other people
tell me when they have aspergers or a child with aspergers and he said
"Well there's alot of over - dx's out there.

I guess, if you child isn't perservering on shower heads or telephone polls, you, or your child were mis-dx'd according to this doc right???

Anyway, tell me your thoughts. I know that there's adult aspie's I have talked to on other boards, I also obviously talk to parents of our kids.... You guys.... And our kids perservere on normal stuff, just imo its completely obsessive.

Sheesh, I really had high hopes with Stanford.......

Lainie

iVillage Member
Registered: 06-25-2003
Fri, 04-06-2007 - 8:55am

(((((((Lainie))))))),


I am so sorry that you went through all this trouble to be frustrated again!


It sounds liek thsi Drs definition of "obsession(s)" is very different than mine.

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 04-11-2003
Fri, 04-06-2007 - 9:40am

Lainie,

I am so sorry! HUGS If that doctor is right (he's not) then Kyle wouldn't have AS either. His obsessions change frequently. They are usually about whatever video game he's currently into. Yes, video games are age appropriate. That's why I don't restrict them even though we get sick of the fact that's all he wants to do or talk about. In fact Kyle recently told me he hates his computer because it makes him do nothing else. But it also gives him a connection to his peers. Anyway, I'm so sorry you didn't get what you need.

I've been thinking of you guys a lot. Has your ds gotten any more help at school?

Samantha

Samantha
iVillage Member
Registered: 05-26-2000
Fri, 04-06-2007 - 10:29am

Lainie,

I'm sorry that you are having such a rough time with trying to get a diagnosis.
Here is my 2 cents. First, let's look at the DSM-IV criteria (and I will honestly say I have trouble with this because it is not in laymans terms):

1. Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least of one of the following:

a. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus

b.apparently inflexible adherence to specific, nonfunctional routines or rituals
stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole body movements)

c.persistent preoccupation with parts of objects

Here is what I get out of that.... It does say "stereotyped" and restricted patterns of interest, but there is no definition of "stereotyped". If that means something unconventional to NT's (shower heads, etc.) then fine, but good gravy, wouldn't bus numbers fit into that category??????? How many NT's do you know that even NOTICE a bus number, muchless have an extreme liking/obsession with it???? (Of course I'm using bus numbers because our kiddos have that in common, which is really the only obsession my Josh has that would then not be considered "age appropriate" by this Stanford Psych's opinion).
I viewed the following website:

http://www.theaspergersconnection.org/courses/esimplications/behavior_patterns.html

This area quotes Tony Attwood explaining this portion of the DSM-IV criteria stating "The most popular special interests of boys with Asperger's Syndrome are types of transport, specialist areas of science and electronics, particularly computers...Girls with Asperger's Syndrome can be interested in the same topics but clinical experience suggests their special interest can be animals and classic literature."

No where in these quotes do I see anything that even "hints" to the criteria meaning that the obsession must be a "strange thing" to an NT such as shower heads etc., in fact, the "most popular" seem pretty commonplace, age-appropriate likes for many kids, and Tony Attwood is a leading expert in the field! I once read (and I can't remember where, that it isn't what the child is preoccupied with, it is the level in which they are preoccupied).

That being said I'll make my third argument for your case and then I'll leave it alone.

NO where does the criteria state that one MUST have an unusual interest/preoccupation to be considered AS. In fact, the diagnostic criteria states that in the area of Behavior/Interests/Activities the child must have ONE of the listed behaviors, so if the Psych won't qualify him on the obsession there are THREE other items left!!!!

I say get a second opinion! Once again, I'm not a professional, but IMHO the info your are being given is just plain wrong.

Okay, as you can see I'm a bit riled up about this. If the tone comes across bad I apologize to all. When I feel strongly about something I can get on a tangent.

Hugs,
Heather

iVillage Member
Registered: 04-07-2003
Fri, 04-06-2007 - 12:20pm

the doctor made this very important decision in basically 2 hours? Did he have you fill out any special paper work like the Autisitc observation forms and His teachers? The othe rladies can gove you those names( I am in a bad mood at the moment look under off topic) So i can't remember sh**. But I remember Josh gooing through 8 hours of testing over the course of a few days. I remember the doctor spending lots of time with Josh during the testing and talking to him
Josh have obessions/ gfears/ and anxieties that change as he gets older.He has never totally gone over board with any one of them where he can recite the different types of clouds in the sky or sit there collecting weather data all the time. He never got into Yugioho or Pokemon because I never allowed him to watch the shows so they never became issues. But he liked his matchbox cars, lined them up. He now likes to read the newspaper everynight and seems to be quite the newsman at school. But give him real school work to do, may as well ask him to do oral surgery on himself. But based on your idiot's opinion Josh may not fit the criteria either. Obession can change as the child gets older and their skills grow. But Josh liked to play with his electronic kits, which is normal for boys and cars.. again normal for boys. Also can go overboard on the game boy etc..

UGh idiots.
Rina

Avatar for toryanna
iVillage Member
Registered: 03-27-2003
Fri, 04-06-2007 - 1:09pm

Oh no hon. I've been thinking about you working on getting this dx. All I can say is :P------------------- to your doc there. I guess Vic qualifies even according to this guy. Victor has a few obsessions that switch depending on time of year, which kid at school is talking to him, etc.. but he has had an obsession with dinosaurs since he was 4. He still relates a lot of his life to dinosaurs however can recite all of the Yu-Gi-Oh monsters and Pokemon characters by heart also. He's also very interested in learning about animals.

I know it took us 10 years to get the correct diagnosis for Victor. I hope that you find a doctor that will give you the peace of mind you deserve.

Alexis

iVillage Member
Registered: 01-25-2007
Fri, 04-06-2007 - 5:56pm
When my son was first diagnosed the Doctor said he had PDD-NOS. He had Asperger's traits but she didn't believe that he had them to the degree that would warrant a full blown Asperger's diagnosis. After see him in therapy for about a year she decided he really did meet all the criteria for Asperger's. Was PDD-NOS not a possibility in your son's case? I understood it to be a subthreshold (milder?) form of the more severe spectrum disorders. By the way, my son's obsessions change too. It is more the intensity on which he focuses on a particular interest to the exclusion of all else and how his mind stays stuck there that is not normal.
iVillage Member
Registered: 04-05-2007
Fri, 04-06-2007 - 7:07pm

I'm not sure how the psychologist thought he could make a determination about your son based upon a single, one hour meeting. A person can present differently on different days and answers ton his questions can only describe what's going on with your son. Seeing firsthand and living with his behaviors is something different altogether.

Personally, I think his comment that Asperger's is over diagnosed is very revealing of his mindset. Asperger's is a spectrum disorder and it sounds like he simply won’t diagnose it unless a child falls at the most severe end of the range.