argh!! at diagnosis meeting

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iVillage Member
Registered: 02-12-2005
argh!! at diagnosis meeting
3
Thu, 10-12-2006 - 12:35am

We had 2 days of meeting with the various dr, ot's pt's, speech path's etc and I am more confused now than when we started!! ARGH!!!

Our dr dx'ed Joey(3) with ASD. Basically he said if Joey could talk, he would say he had Asperger's. Joey doesn't talk, we have been teaching him sign language and that is working for the most part in that we are both less frustrated than when we started. The first thing the dr says as we sit down is that she doesn't feel that he has Autism, but that being said, she isn't ruling it out though either?!? She said that he falls under the ASD umbrella and that if he talked more, she could give a better diagnosis. That was the main reason we went to get a diagnosis in the first place...he can't talk!! She then tells us what we have known for a few months, that he has problems in his fine and gross motor skills and is severe speech problems! no Duh!!! That's why we are here! So she goes on to say that they are sending him to a sleep dr because of his sleep issues(He very rarely sleeps more than 2 hours at a time and usually wakes up screaming) they are sending him for an EEG and MRI and that they will follow up in 6 months. So after going through a meeting with her that was as clear as mud, I have to figure out what we are doing from here. We don't have a diagnosis from her, which we need for funding purposes and we are no further ahead than when we started. It feels like I put my son through all this testing for nothing except that they don't know what to do with him and as I was told countless times over the last 2 days...he doesn't do things normally and doesn't fit the mold. ARGH!!! I could have told them that! We have to take him for more testing which will include knocking him out so they can do the MRI and blood testing they want done. They are also testing him for Fragile X(I am still investigating that one as I dont' know anything about it) think he may have had a stroke at one time, they agree that he may be having seizures.

So here I am and I don't have the faintest idea where to go from here. My dr said that he still believes he is autistic, and very high functioning and will continue to treat him as if he is until he is told differently. I am sooooo confused.

iVillage Member
Registered: 10-03-2004
Thu, 10-12-2006 - 6:49am

Hi, that is frustrating. Won't either of these doctors write a dx of autistic spectrum disorder for you so you can get funding? Your ds is so young, and I'm guessing the one doctor is seeing both ASD and non-ASD traits and is working towards an exact diagnonsis. It is not uncommon to not yet get an exact dx, but here for funding purposes, you need a working one! We didn't get dx of ASD until ds was over 6, but we had all the services he needed without it starting at 3. Had we pushed for dx at 3, we might have gotten that dx ... instead he was listed as speech and language delay with anxiety disorder, later adding receptive and expressive language disorder.

At this point in time, you need the services, such as speech, OT, behavioral counseling, play therapy. It sounds like you already have people working with him, and that is great! Can you ask for a provisional dx of ASD? I would. Doctors understand about the need for these dx'es for government and school purposes, etc. in order to get the help you need. This could be treated as separate issues, the real need for an exact dx, and the dx needed for funding.

(((((hugs)))) It just isn't that uncommon for doctors to be in process on a dx with a young child for a long time, these dx'es are fluid, also and can change as a child ages. Working with the symptoms is key now, having a complete picture will take time as your son grows and learns and he continues to get help in that process.

iVillage Member
Registered: 03-26-2003
Thu, 10-12-2006 - 2:53pm

WOW - how terribly frustrating and confusing for you.....(((HUGS))). I feel so bad for you.....your son's sleep problem sounds awful (for him and you).....poor guy. I agree if ASD is the doctor's best guess at a diagnosis, then get it in writing so you can get some funding/supports for your son.

Hang in there,
Christie

iVillage Member
Registered: 06-30-2003
Thu, 10-12-2006 - 4:17pm

The school just recently labelled my son as autistic. I would have said Asperger's and I still say Asperger's. They say autism only because he had a speech delay in very early childhood. He didn't have single words by age 2, but he had started uses some phrases by age 3. He was about a year behind in communcation until about age 6.

I've read about Asperger's. There can be a language delay in early childhood, but not a profound one.