Need a bit of advice

[cogero]

in September/October 09 we received a diagnosis of PDD-NOS for our ds age 23 months at that time. He is now 28 months.

He has been receiving ABA (10 hours per week) ST (4x/week) OT (3x/week) and PT (1x/week)

When he was evaluated he was in the 8-10 month range according to the evaluations. He is now according to his 3month and some of his 6 month evals 12-14 month range according to the specific criteria required on the eval.

My ABA is seeing more of an 18 month range and sees a lot of his delay is more of a speech issue. Though he is beginning to talk and he now looks at people and engages them.

We have an appointment with a pediatric neurologist in 2 weeks FINALLY. My service coordinator recommended not telling the pediatric neurologist of the PDD-NOS diagnosis and to see what they come up with on their own.

What do you think of this advice?

My son was born with congenital defect which has been repaired. My pediatrician recommended seeing the neurologist to make sure nothing else is happening. My ped also said that if he is on the spectrum we really will not have a definative answer of where he is on the spectrum until he is 4-6 years old.

This has been a confusing few months and I am happy that he is progressing. There is so much information out there that it is hard to decipher what works for us and is right.

Also is there anything I should be asking the neurologist when we visit.

 

[KristenHoneymooner]

I really don't see the sense in not telling the neurologist about the diagnosis up front. If you are questioning the autism (PDD-NOS) diagnosis, then I would take him to a psychologist specializing in autism spectrum disorders and explain your concerns and your desire for a new evaluation.

If you don't mention autism to the neurologist, I think it is likely that the neurologist will not mention it because autism is such a scary term for so many parents. You thus may leave the appointment never having discussed autism and have a false belief that that's not what the neurologist thought was going on, when in fact, he just did not want to be responsible for even touching on that issue, since psychologists generally diagnose autism rather than neurologists and he probably wouldn't feel qualified to suggest it.


ETA: Also, the autism spectrum label (PDD-NOS) is a positive thing if it is getting your child the early intervention services he needs. It would be a shame to lose the services your son receives based on that diagnosis if you lose the diagnosis by giving medical pracititioners incomplete information about your child.

 

[cogero]

thanks for the response.

it seemed like an odd thing to me. especially since my ped wanted us to go for that exact reason.

He was diagnosed by a psychologist and will be evaluated again for preschool since he ages out of EI in November and we want him to go to preschool in September because he is in desperate need of socialization too.

Me personally I have had enough time to adjust to the PDD-NOS and him having an ASD. It is nowhere near as scary as being told that if you don't transfer your son and have surgery he won't be here. Just one more thing that is proving I am a strong person.

 

[HappyDznyCamper]

I think not being open and honest with your child's Drs does your child a disservice. It was wrong of another professional to recommend "hiding" the diagnosis.

 

[jodifla]

in September/October 09 we received a diagnosis of PDD-NOS for our ds age 23 months at that time. He is now 28 months.

He has been receiving ABA (10 hours per week) ST (4x/week) OT (3x/week) and PT (1x/week)

When he was evaluated he was in the 8-10 month range according to the evaluations. He is now according to his 3month and some of his 6 month evals 12-14 month range according to the specific criteria required on the eval.

My ABA is seeing more of an 18 month range and sees a lot of his delay is more of a speech issue. Though he is beginning to talk and he now looks at people and engages them.

We have an appointment with a pediatric neurologist in 2 weeks FINALLY. My service coordinator recommended not telling the pediatric neurologist of the PDD-NOS diagnosis and to see what they come up with on their own.

What do you think of this advice?

My son was born with congenital defect which has been repaired. My pediatrician recommended seeing the neurologist to make sure nothing else is happening. My ped also said that if he is on the spectrum we really will not have a definative answer of where he is on the spectrum until he is 4-6 years old.

This has been a confusing few months and I am happy that he is progressing. There is so much information out there that it is hard to decipher what works for us and is right.

Also is there anything I should be asking the neurologist when we visit.

Here's the thing: Studies show that an ASD diagnosis at a very early age is often wrong. One study showed up to 60 percent of being inaccurate!

Language disorders are often misdiagnosed as autism. I'm on a message board with hundreds of other parents, many of whom have children who were originally misdiagnosed.

Since there are no actual medical tests for autism, the Dx rests solely on the accuracy and knowledge of the clinician doing the testing. So you really want to do your homework on these people, to make sure they are doing a DIFFERENTIAL diagnosis, which means they have EVERY Dx on the table, not just autism.

It makes sense that a child with a language problem would avoid eye contact. I mean, what's the first thing you expect when you make eye contact! You expect a conversation. For a child who can't make or understand conversation, these encounters are uncomfortable.

Take a look at this essay by Dr. Stanley Greenspan, the autism psychiatrist who developed the Floortime therapy for autism. It's titled
"The Misdiagnosis of Autism Spectrum Disorders."

http://www.icdl.com/distance/webRadio/documents/10-8-08b.pdf

As you travel with your child on this journey, it's important to have all the information you can so you are making the best possible decisions. Labels are very helpful, IF they are accurate.

If they are not, they can take you down a lot of wrong paths.

 

[kampfirekim]

Here's the thing: Studies show that an ASD diagnosis at a very early age is often wrong. One study showed up to 60 percent of being inaccurate!

Language disorders are often misdiagnosed as autism. I'm on a message board with hundreds of other parents, many of whom have children who were originally misdiagnosed.

Since there are no actual medical tests for autism, the Dx rests solely on the accuracy and knowledge of the clinician doing the testing. So you really want to do your homework on these people, to make sure they are doing a DIFFERENTIAL diagnosis, which means they have EVERY Dx on the table, not just autism.

It makes sense that a child with a language problem would avoid eye contact. I mean, what's the first thing you expect when you make eye contact! You expect a conversation. For a child who can't make or understand conversation, these encounters are uncomfortable.

Take a look at this essay by Dr. Stanley Greenspan, the autism psychiatrist who developed the Floortime therapy for autism. It's titled
"The Misdiagnosis of Autism Spectrum Disorders."

http://www.icdl.com/distance/webRadio/documents/10-8-08b.pdf

As you travel with your child on this journey, it's important to have all the information you can so you are making the best possible decisions. Labels are very helpful, IF they are accurate.

If they are not, they can take you down a lot of wrong paths.

Absolutely right! Autism should never be diagnosed just based on speech delay. Several other deficits must be present. Our Developmental Specialist was very specific about the criteria. PDD-NOS, however, doesn't necessarily have to include as many deficits as Autism. That was DS's 1st clinical diagnosis by a psychologist before the official autism dx by the Dev. Spec. (which I HIGHLY recommend). They are soooo familiar with every variety of disorder in children, as well as the treatment plans and meds necessary.

OP: Your child very likely qualified for each therapy service individually, so the deficits are there. Sometimes well meaning professionals/therapists (not all, so you therapists out there, please don't get mad at me) can overreach beyond their expertise with their statements (the voice of experience speaking) as in saying its mostly a speech prob. She/he could be right, Dr's don't have all the answers, but I'd still leave the dx to the docs. It is not uncommon for spectrum disorders to be diagnosed around 2 yrs. If I had known more about autism I would have seen it in mine at that age. Instead I thought it was speech only because my view of autism was based on 1 other child and the movie Rain Man and so we waited until age 3 before we pursued further eval. I believe I saw on another thread that the PDD-NOS was confirmed by another doc. Looks like you're doing everything right. Luckily we were able to get all the necessary services at 3 yrs. In SC that's when he could begin spec ed preK. Just looked up and saw the length of this post. Sorry, I didn't mean to go on so long. Keep up the good work. You're doing great!

 

[cogero]

Thanks so much for your reply to this thread.

Yes the diagnosis was confirmed for now with the ped neurologist. We are going to continue all his therapies and go through our next set of evaluations for CPSE for school and I have given the district an extra week after spring break to send the paperwork so now I am going to call the service coordinator to find out the hold up.