Re: Aspergers ??, help please! (off topic, but I trust you guys!)

[Guest guest]

Wow, Judy. sounds like my son! GFCF since end of July, okay we

have just been in regular ed this year, second grade. AJ would fit a very

mild PDD-NOS, and improving daily.

Labels are something I've got a big issue with. My son holds his initial

PDD-NOS label, he alternately goes by autism and adhd. Sometimes we throw

CAPD (Central auditory processing disorder) in there. But no one has given

him the label he needs and deserves and is totally accurate for him.

Intestinal disorder of unrecognized etiology causing hyperpermeability and

poor digestive process resulting in a developmental disorder mimicing

autism. Whatever else experts want to call him, this is the root of the

problem for him, with perhaps other involvement (vitamin A pathway screwed

up at an early age due to poor response to pertusis vaccine)

Until we get good labels for what is going on with our kids, we aren't going

to get their treatments recognized (much less covered by insurance).

But I digress. Whatever fits the inaccurate and archaic system that we

currently work in is the label to go with.

Okay, let me lighten up. I really respect and like my son's psychiatrist.

I am just expecting that what my son was labeled at age three and where he

will be at age 13 will not coincide. And he will be labeled as one of those

mislabeled children, with very little attention or respect given to what

went into his change of diagnosis.

Don't know if this helps or not....

Alice

> Date: Sat, 30 Dec 2000 23:43:54 -0000

>

> Subject: Aspergers ??, help please! (off topic, but I trust you guys!)

>

> Hello all,

> I'm hoping that someone out there has some words of advice. My 6.5 year

old

> son lost his autism dx 3 years ago (after 8 months DTT). We were told

then,

> and have been told every 6-8 months since then @ developmental evals, that

> he no longer fits the criteria for autism/PDD. He has continued to have

> 'issues' which we have treated as residual behaviors and addressed

> accordingly both in and out of therapy. He has been GFCF (w/slip ups)

since

> July of this year. He has not had DTT in over a year, and has been in

> regular ed (with some difficulties) since he was 4. He's in 1st grade now.

> At his eval on Thurs, the doc (who has seen him before) mentioned

Aspergers

> as a possibility @ this point. His former DTT lead therapist, now a

behavior

> analyst, feels the same way, and after carefully reviewing the DSM IV

> criteria, I can see that he does fit the Aspergers dx, albit mildly. So

what

> now? Is he Aspergers? Is he recovered working thru residua, as we have

> believed for the past 3 years? I know in a lot of ways the label doesn't

> matter, he's the same kid who had THE BEST Christmas ever last week

(grin!).

> I want whatever's going to help him the most. So if any of you have been

> down this path, or one similar, or if you're a professional who has some

> insight, I would be most grateful for any help in wading through this.

> Thanks again,

> Judy ('s very proud mom and #1 fan!)

[Guest guest]

Same boat here. With improvements, the aspergers label slipped away,

then it was nonverbal learning disorder - and a hassle getting the

level of services I wanted. Until we clarified that NLD is an

autistic spectrum disorder. Back came the services. There wasn't a

tidy box to check off unless we went with autism. Which doesn't

quite fit any more. But we check it to get the higher level of

services. Just because he acts more NT doesn't mean he magically

overcomes years of confusion and suddenly behaves like he had a

normal childhood. (We also check off " other health impaired " because

of a " serious digestive order " .)

" What's in a name? " to quote a certain playwright. For us, social

skills training, OT, speech pragmatics, and classroom accommodations!

.....I am glad we still have the

> autism dx, it has helped us receive some services. I don't plan on

having

> him re-evaluated any time soon, and as a matter of fact turned down

> additional testing at his three year iep. I don't see what good

that

> would do other than risking the loss of services that we have

fought so

> hard to get in the first place.

>