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How common is it? **small update**

Posted by on Feb. 28, 2013 at 12:48 PM
  • 10 Replies
How common is it to have others in the medical community disagree with the Dr that diagnosed your child about the diagnosis your child is given?





This has been a ridiculous ongoing fight! DS was born early, he's been in pt, ot & st since approx 9m old. His pediatrician referred us to an Autism specialist and Developmental specialist for a diagnosis. He was diagnosed PDD-NOS. And when I told his therapists they were actually angry. They think its ONLY sensory processing disorder. They don't listen to me when I have concerns like head banging, body chewing, obsessive/rigid behaviors like lining things up, following lines, opening and closing doors. Then there's his fears that could fill up pages worth. We live our lives around him and have changed so much to accommodate his fears and triggers but they don't listen, they don't care. They work on what they see and that's it. I've brought them videos, pictures, lists of frequencies but they still don't listen or help! Now that they disagree with the diagnosis they are bring completely rude to me! The Autism specialist wants DS, 2yrs old- in early intervention structured play group/preschool. They requested the records from Therapy and when we went in yesterday for the evaluation to get into play group/preschool the records that Therapy sent didn't say anything but that they didn't agree with his diagnosis and they think he doesn't need structured play group/preschool. So now they are trying to get in the way of me getting my son the help he needs because they disagree???? Why? I'm trying to do what's best for DS! Luckily the teacher that did his evaluation worked with the Autism specialist that diagnosed him and respects her diagnosis and said this is common to have therapists disagree, especially when the kids are high functioning. I'm just so tired of this! I am starting to get extremely angry. Its one thing to give me attitude queen they see us but to get in the way of That's my son help? that's not ok with me... So, is this common or am I a rare case?



**LITTLE UPDATE AND RESPONSE TO MOST QUESTIONS**

We have our follow up/feedback appointment with the Autism specialist on March 14th. I emailed her today and she's going to look into other private Therapy groups in my area so we can switch therapists. She said she didn't want us going through early intervention for therapies because in our area they are short staffed and she doesn't feel that he will the needed amount of Therapy with them because of that. So we will be looking for new therapists but it'll be a few more Weeks with these rude women!



I did call the EI playgroup/preschool teacher that did his evaluation yesterday to ask about me getting copies of the information sent to her by his therapists. She said she would make me copies of everything to show my sons Autism specialist on the 14th. She also said that it wasnt sent with the medical records, that they didn't agree with his diagnosis, but instead they each sent an email to her telling her they disagree and why. She read the emails to me and they all said pretty much the same thing, He can talk and make fleeting eye contact so they don't think he's on the spectrum and his issues stem from sensory processing disorder. He looks you in the eye for maybe a second and that's it, he also just started taking about 2 months ago, he's 2y 2m old he doesn't respond to his name at all and is delayed in every area. But they all think that every single issue he has is due to sensory processing disorder and nothing else. I'm so glad we have such a wonderful Autism specialist and EI group to help me and my son along because these ladies are making me crazy! Thank you ladies, for your support and opinions!!! This is a really rocky start to an already rough road! I how things smooth out soon.
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by on Feb. 28, 2013 at 12:48 PM
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Replies (1-10):
takeitall13
by on Feb. 28, 2013 at 12:56 PM

 BUMP, we've only yet worked with therapists from EI who have said they would be surprised if our son isn't high functioning... is there someone else you can take your son to instead?  someone who WILL respect the dx?  I would be livid.  HUGS

redheadstar
by Member on Feb. 28, 2013 at 1:04 PM

With my first 2 kids, not a Dr but a teacher said my autistic son was just delayed and my daughter was mildly retarted with autism,  how wrong.. my son has severe austism and my daughter had learning disabilities <14 years later she is an honor student>no autism no mildly retarted.

MomOfOneCoolKid
by Gold Member on Feb. 28, 2013 at 3:40 PM

I have no idea if its common, but its unacceptable.

Is there anyway you could get new therapists?

Jnc91
by Bronze Member on Feb. 28, 2013 at 4:09 PM
My sons teacher says he's NT
His therapist says my son has emotional issues from his verbally abusive dad
His OT says he has SPD
The developmental dr said either aspergers or genius

No one agrees. Ds will be 5 in June.
aidensmomma508
by Wendy on Feb. 28, 2013 at 4:12 PM

I think it's common 

JTMOM422
by Brenda on Feb. 28, 2013 at 4:16 PM

Unless they are a specialist in this field and have a degree to dx a child I would tell them they have no say in anything. Remind them it's not about what they think it is but what the doc says it is. They cannot over ride his dx and they know it. If I were you I would look into new therapists. It sounds like how you feel is not important. If the parents and the therapists cannot work as a team then it's time for a change in therapist. Our therapist follow our doctors lead. If he says one thing they do it. 

emarin77
by Silver Member on Feb. 28, 2013 at 5:42 PM

My son's pediatric neurologist would not diagnose him with Autism only his child psychologist did.  He stated that he has mild Autism.

Charizma77
by Carissa on Feb. 28, 2013 at 5:54 PM

We have never expirenced it but being on the CM and Facebook boards it appears to be common. How frustrating for you!

aimeegreen4ever
by on Mar. 1, 2013 at 1:11 AM
Bump with update
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darbyakeep45
by Darby on Mar. 1, 2013 at 6:38 AM

How dare those therapists tell an Autism Specialist that she's wrong about a diagnosis of an Autistic child!  They have some serious balls in my opinion!  I would give them a piece of my mind and NOT allow them to be rude to me!  Not an option!

Hugs mama!  Stay strong but DON'T put up with their crap!

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