Had anyone gotten a diagnosis that they disagree with?

Today we had our psych eval since we are transitioning to CPSE. DS gets speech, OT and he is in a center based program 1/2 days. He currently has no diagnosis.

He had a HORRIBLE day. He had a tantrum like I havent seen in MONTHS. He climbed on a chair while I was talking to the therapist and fell and banged his head. He cried. He was defiant. He was OBSESSED with a car he found on the floor and was saying, "Truck" the entire time he was there. He refused to sit. He didn't take part in some of the tasks.

He has MANY sensory issues and he has a MAJOR speech delay but I DON'T think it's PDD NOS. I know I'm not trained to diagnose but this is my feeling. He can't focus and has poor attention but he is very connected, affectionate, responsive. His social delays aren't significant. He uses language with purpose - although it is often unintelligible.

She gave me an Achenbach scale to complete and she said she is waivering for PDD NOS. She will talk to his teachers as well. She said he is not a cookie cutter case and she is having a hard time getting a feel for him.

I feel so defeated because I have insisted for so long that he isn't on the spectrum. I don't know why it's so important to me that he isn't diagnosed as PDD NOS - maybe because I think it's something else. If she had said ADHD I would have agreed wholeheartedly.

I'm sorry I'm babbling. He hasn't been diagnosed yet - but I think it's on the horizon. I'll know more next week. I'm just so sad.

Re: Had anyone gotten a diagnosis that they disagree with?

Oh man, I hear you on this!

I really can't get a "straight answer" on my son's diagnosis. One neurologist said no. The other says he is a hard case so to err on the side of caution she gave him "PDD". But she always follows that up with "in New Jersey if you have that label you get insurance benefits". OK, fine. But is that the only reason you're giving it to him?

Schol district said that they will not be diagnosing him but will do a neuro consult next year (since I already have my own neuro so they'd rather do it after more treatment).

And I don't know why it even matters to me so much anymore. Technically my son is on the spectrum . However, I very seldom tell people that. Mostly because they don't understand what a spectrum means. And I don't feel like explaning because I get upset. And I get more upset.

And the evaluations are the worst. It usually takes my sone 10 minutes to warm up. Explore the surroundings. And then he'll settle down and participate most times. If he'd have hit his head like your son it would have all been over for us too...and then they don't get a good picture of him. Plus my school district has the worst facility for some of the evalations. It is an old house with a conference table in a small room. And then other rooms were people's offices Really just not a good environment to conduct the evals because there is WAY too much for him to explore.

Anyway, I guess I'm just commiserating. I think deep down I don't think he is PDD. But I also don't want to be in denial about anything either. So i walk a fine line with it. And just take whatever therapy I can get my hands on. He has ABA, Classroom shadowing at regular daycare, speech, OT and PT.

Haven't our sons always been like two peas in a pod?

Re: Had anyone gotten a diagnosis that they disagree with?

Good luck.

Message edited 4/1/2010 12:17:08 AM.

Re: Had anyone gotten a diagnosis that they disagree with?

Re: Had anyone gotten a diagnosis that they disagree with?

with a spectrum diagnosis they have so many more windows for therapy...

it really does help a child out, and if its not being paid out of pocket i would take the services and then have him re-evaled in 6 months or a year.

DS is autistic, diagnosis classic autism, and he is very affectionate, lovable and communicates to the best of his ability (he says over 200 words, can count to 50, knows his ABCs forward and backwards (he is a little over 2.5y/o)

i know Hofstra does a study on children, and they usually just ask for a donation if you cant afford the study (we didnt pay at all) and they never asked for money from us.

i would get a second opinion... we did (with Hofstra) even though i knew at 5 months he was on the spectrum.

it's frustrating, but now is the time to get as much therapy and learning while their brains still absorb so much.

good luck and

Re: Had anyone gotten a diagnosis that they disagree with?

Thanks girls. It is so hard to accept. I've come to terms with it in the last 24 hours. I know that the right thing to do is go forward and accept all the help that we can. Hopefully a year or two will do wonders for him.

Lisa - we really do have two of a kind, don't we? I wish you lived closer - I'd love to do a play date! Maybe over the summer!

RMA9728 - That's what's scary. I feel like sometimes they give PDD NOS as a "default" diagnosis when they aren't really sure. I'd much rather them say, "We don't really know what's going on, but we are going to give him this diagnosis and loads of therapy and re-evaluate in a year."

dpli - I think we are going to have a similar experience. You really helped me accept this and put it in perspective!

AjandCjsmommy - Thank you for the advice. I guess I have a picture in my mind of what PDD NOS looks like and I'm trying to reconcile having the same diagnosis (my friend's son has PDD NOS and is non verbal)

Message edited 3/31/2010 7:07:32 PM.

Re: Had anyone gotten a diagnosis that they disagree with?

There is no specific criteria for PDD-NOS - all it should mean is that the child has enough to fall somewhere on the spectrum, but not all the criteria to warrant the classic "Autistic" diagnosis No matter where a child falls - he or she can be affectionate, still be social (just not at the age level they are at), and verbal....

Re: Had anyone gotten a diagnosis that they disagree with?

Posted by lipglossjunky73

There is no specific criteria for PDD-NOS - all it should mean is that the child has enough to fall somewhere on the spectrum, but not all the criteria to warrant the classic "Autistic" diagnosis No matter where a child falls - he or she can be affectionate, still be social (just not at the age level they are at), and verbal....

Re: Had anyone gotten a diagnosis that they disagree with?

Re: Had anyone gotten a diagnosis that they disagree with?

Posted by mom2aidan

Posted by lipglossjunky73

There is no specific criteria for PDD-NOS - all it should mean is that the child has enough to fall somewhere on the spectrum, but not all the criteria to warrant the classic "Autistic" diagnosis No matter where a child falls - he or she can be affectionate, still be social (just not at the age level they are at), and verbal....

Thanks Liza - I'm just having a very hard time with this and I guess I just don't want to believe it. The fact that they say he's not a "cookie cutter" kid and that they aren't 100% just gives more room for my denial to grow I guess.....

I'm just so worried about him

Re: Had anyone gotten a diagnosis that they disagree with?

Re: Had anyone gotten a diagnosis that they disagree with?

Another therapist here, and I too feel that PDD-NOS is thrown around quite often when doctors are unsure.

That being said, I agree with the others and say take the services, the diagnosis doesn't matter as long as there is a plan made to meet his specific needs that is all that matters. He will do great!

Re: Had anyone gotten a diagnosis that they disagree with?

I think a lot of children on the spectrum classified as PDD-NOS are really "borderline".

And that a lot of those same children might also be declassified when they enter Kindergarden.

There are so many variations. Some children will be able to speak, some won't, some are social, some are not, some have aggressive behaviors, some don't.

It's not uncommon to have a child that is typical not talk until they are 3. Add shyness, not really social and it would be nowadays almost fall under the Spectrum.

I think the line does get blurry between typical children falling a bit "behind" on what should be and those who are on the Spectrum and higher functioning.

But from what I understand, as they grow up, the definition gets clearer than at a younger age.

Re: Had anyone gotten a diagnosis that they disagree with?

Yes, my son was misdiagnosed with PDD twice. He was language delayed.

It was very upsetting at the time. Looking back though, it helped us get the services that he really needed. Therapy really does work, it's amazing. PDD-NOS is just a label. It doesn't change anything. It doesn't predict the future.

Re: Had anyone gotten a diagnosis that they disagree with?

Thank you all for your advice and support. I'm looking forward to seeing what happens Tuesday and with getting all the help he needs.