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maiden
Whoa!
Member since 5/08 1814 total posts
Name:
T
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DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
DD was just diagnosed as being on the spectrum (PDD-NOS). I know nothing about autism, but I know I want to get her the best care (as, I know, everyone does for their DC).
Does anyone have any specific recommendations of places, organizations, or particular therapists to contact. I am not sure if I will be using the school district, so I may end up paying privately. She is 3.5 years. I don't know where to begin and it is all so overwhelming. 
Message edited 1/27/2013 11:11:44 PM.
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Posted 1/27/13 11:11 PM  |
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Domino
Always My Miracle
Member since 9/05 9922 total posts
Name:
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Re: DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
Overall ABA therapy is the best form of therapy in helping autisitic and ASD children learn. The earlier they start, the better the prognosis. Is there a reason you do not to go through the school district? With a diagnosis your DD would likely qualify for a special preschool and you could select one that is more ABA based. DS has been receiving services for PDD-NOS since 19 months and was receiving 19 hours a week of ABA Therapy. We went through EI so we did not pay out of pocket. The more hours of ABA a week the better the prognosis, so I would imagine paying out of pocket for ABA therapists 5x a week would be very costly. I know getting this diagnosis can be overwhelming. I certainly felt that way when DS received his diagnosis. I would research ABA therapy and start there. A lot also depends on what area your DD needs help. Is she high functioning? Is she verbal? Does she have other needs as well? I know there will be others on here that will be able to give more advice. I found this board to be a wealth of information.
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| Posted 1/28/13 8:01 AM |
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lvdolphins
My Loves!
Member since 5/05 46292 total posts
Name:
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Re: DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
Like the above post mentions, doing all the therapies privately can definitely add up.
My DS had PDD-NOS. He was diagnosed around the same age, but, was already attending a pre-k through EI (developmental prek).
When it was time to transition into pre-k, we went through the district and stayed at the school. He recieved all his services there (ABA, Speech, PT, OT). He also was in a 2.5 hours class.
If you want any info, please FM me. My DD also is in pre-k through the district (she has Down Syndrome) and recieves all her services at her school as well.
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| Posted 1/28/13 10:25 AM |
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BargainMama
LIF Adult
Member since 5/09 15657 total posts
Name:
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Re: DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
Insurance companies now have to provide services for children with autism (OT, PT, speech, ABA, etc.), so as long as the co-pays are reasonable, you have nothing to lose really. I believe this went into effect the 1st of the year. However, if your child is on the spectrum, he/she would likely benefit from a special education pre-school setting. Whether it be a self contained class, or an inclusion/integrated type one. That will be really expensive paying out of pocket, so it's to your benefit to go through the district.
Message edited 1/28/2013 1:37:49 PM.
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| Posted 1/28/13 1:34 PM |
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cloddy
Holiday 2011 photo
Member since 8/05 8088 total posts
Name:
Kristen
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Re: DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
We were told PDD-nos was not an autism diagnosis? DS has been labeled PDD-nos after his CPSE evals but at the meeting when I asked for an explanation of that they said it is NOT autism and it is not Asberger's. it is the catch all "other" category
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| Posted 1/31/13 10:53 AM |
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KarenK122
The Journey is the Destination
Member since 5/05 4430 total posts
Name:
Karen
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DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
PDD is on the spectrum. There are a ton of diagnoses that are considered part of the autism spectrum.
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| Posted 1/31/13 11:36 AM |
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dpli
Daylight savings :)
Member since 5/05 13973 total posts
Name:
D
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Re: DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
Posted by cloddy
We were told PDD-nos was not an autism diagnosis? DS has been labeled PDD-nos after his CPSE evals but at the meeting when I asked for an explanation of that they said it is NOT autism and it is not Asberger's. it is the catch all "other" category
Classic autism, Aspergers and PDD-NOS all fall under the umbrella of Pervasive Development Disorder (PDD), which is often also referred to as Autism Spectrum Disorder (ASD).
PDD-NOS is sometimes given as a diagnosis if it isn't 100% clear if the diagnosis is truly an ASD, especially when the child is very young. I know that was the case with my son. As he aged, it became more obvious that he is on the spectrum, but at 2 it wasn't so clear cut. The diagnosis allowed him to receive services, though, which helped him tremendously and made a huge difference for him.
They have recently changed the criteria for diagnosing ASDs, and I am not sure if Aspergers will even still be used as a classification.
When they told you it wasn't an autism diagnosis, they probably meant it is not classic autism, that your DS is higher functioning than a child with classic autism. I didn't start using ASD to describe my son until recently, when it became more obvious that he was delayed. People don't understand what PDD-NOS is, but they do understand autism, so using ASD to describe him makes it easier for people to understand what I am talking about.
Message edited 1/31/2013 12:32:31 PM.
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| Posted 1/31/13 12:30 PM |
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cloddy
Holiday 2011 photo
Member since 8/05 8088 total posts
Name:
Kristen
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Re: DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
Posted by dpli
Posted by cloddy
We were told PDD-nos was not an autism diagnosis? DS has been labeled PDD-nos after his CPSE evals but at the meeting when I asked for an explanation of that they said it is NOT autism and it is not Asberger's. it is the catch all "other" category
Classic autism, Aspergers and PDD-NOS all fall under the umbrella of Pervasive Development Disorder (PDD), which is often also referred to as Autism Spectrum Disorder (ASD).
PDD-NOS is sometimes given as a diagnosis if it isn't 100% clear if the diagnosis is truly an ASD, especially when the child is very young. I know that was the case with my son. As he aged, it became more obvious that he is on the spectrum, but at 2 it wasn't so clear cut. The diagnosis allowed him to receive services, though, which helped him tremendously and made a huge difference for him.
They have recently changed the criteria for diagnosing ASDs, and I am not sure if Aspergers will even still be used as a classification.
When they told you it wasn't an autism diagnosis, they probably meant it is not classic autism, that your DS is higher functioning than a child with classic autism. I didn't start using ASD to describe my son until recently, when it became more obvious that he was delayed. People don't understand what PDD-NOS is, but they do understand autism, so using ASD to describe him makes it easier for people to understand what I am talking about.
thank you! I really wish they had explained that differently. I took that to mean that he wasn't on the spectrum. That changes things considerably.
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| Posted 1/31/13 2:04 PM |
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BargainMama
LIF Adult
Member since 5/09 15657 total posts
Name:
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Re: DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
Message edited 1/31/2013 2:53:21 PM.
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| Posted 1/31/13 2:06 PM |
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BargainMama
LIF Adult
Member since 5/09 15657 total posts
Name:
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Re: DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
Posted by dpli
Posted by cloddy
We were told PDD-nos was not an autism diagnosis? DS has been labeled PDD-nos after his CPSE evals but at the meeting when I asked for an explanation of that they said it is NOT autism and it is not Asberger's. it is the catch all "other" category
Classic autism, Aspergers and PDD-NOS all fall under the umbrella of Pervasive Development Disorder (PDD), which is often also referred to as Autism Spectrum Disorder (ASD).
PDD-NOS is sometimes given as a diagnosis People don't understand what PDD-NOS is, but they do understand autism, so using ASD to describe him makes it easier for people to understand what I am talking about.
This exactly. If I say he has PDD-NOS, people have no clue what I'm talking about. If I say he's on the autism spectrum, they get it.
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| Posted 1/31/13 2:08 PM |
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NewLeaf2012
LIF Adult
Member since 1/11 2741 total posts
Name:
....
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Re: DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
What Is PDD-NOS?
My child has been diagnosed with something called PDD-NOS. What is PDD-NOS? Is it the same thing as autism?
Answer: PDD-NOS stands for pervasive developmental disorder not otherwise specified. In essence, it's a diagnosis that means "on the autism spectrum, but not falling within any of the existing specific categories of autism."
To explain more fully, there are five disorders that fall under the category of "pervasive developmental disorders" (PDDs). These include autism, Asperger syndrome, Rett syndrome, fragile X syndrome, and PDD-NOS. Autism, Asperger syndrome, Rett syndrome and fragile X are all specifically described in the DSM-IV -- the manual that practitioners use to diagnose neurological disorders.
Many children have some symptoms of one PDD and some symptoms of another, but not enough of any one of the four specific disorders to receive a diagnosis. Thus, they do have a PDD -- but they do not have Rett syndrome, fragile X, Asperger syndrome, or autism. As a result, they receive the catch-all diagnosis of PDD-NOS.
There is a common belief that the diagnosis PDD-NOS means that a child has, in essence, a touch of autism. In fact, this may be true or untrue. A child may, for example, have only a few mild symptoms of a PDD and still qualify for the PDD-NOS label. On the other hand, he may have very severe delays in language and communication skills, but still not qualify for a specific autism diagnosis.
At present, physicians are not in agreement as to exactly when a child should be diagnosed with PDD-NOS, autism, or Asperger syndrome. As a result, it is very possible for the same child to receive different diagnoses from different physicians while exhibiting exactly the same symptoms.
My son was diagnosed as PDD-NOS at 22 months old. He is now 3 years,3 months. He is not labeled as having Autism by any of his therapists or by his Dr's. It all depends on who you talk to. And what is going on with the child..
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| Posted 1/31/13 8:33 PM |
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cloddy
Holiday 2011 photo
Member since 8/05 8088 total posts
Name:
Kristen
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Re: DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
Thank you! That's a much better explanation. I should've just researched it myself, but I accepted their explanation.
Sorry I didn't intend to hijack the thread 
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| Posted 1/31/13 9:07 PM |
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maiden
Whoa!
Member since 5/08 1814 total posts
Name:
T
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Re: DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
Thanks everyone. We will be going through the school district. Hopefully things will work out. I am so overwhelmed with everything.
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| Posted 2/4/13 12:19 AM |
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cloddy
Holiday 2011 photo
Member since 8/05 8088 total posts
Name:
Kristen
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Re: DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
Just went through this so sending you hugs! Good luck!
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| Posted 2/4/13 6:04 PM |
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Ookpik
LIF Adolescent
Member since 3/06 726 total posts
Name:
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Re: DD diagnosed on the spectrum (PDD-NOS) - recommendations for the best services?
Posted by maiden
Thanks everyone. We will be going through the school district. Hopefully things will work out. I am so overwhelmed with everything.
DD was also 3.5 years when she was diagnosed with PDD-NOS. We had a private evaluation done by a neuropsychologist and then pursued an evaluation through our district.
She started out in a special needs pre-school with ABA therapy 5x per week, speech 5x, OT 3x and PT 3x. She also started in an intense self-contained environment but because she's PDD-NOS, she was quickly moved into an integrated program.
It's such a daunting and scary process in the beginning. Also emotionally draining. It'll get easier!!
**Wanted to add-I usually just refer to DD as autistic as well, given what one of the previous posters said. It's an ASD and it's easier to explain. Her IEP also indicates her disability as autism so it's just much simpler to refer to it as such.
Message edited 2/4/2013 6:28:30 PM.
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| Posted 2/4/13 6:25 PM |
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