PDD-NOS or SPD w/ Speech Delay

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PDD-NOS or SPD w/ Speech Delay

by Elise
(Cleveland, OH)

My son Ethan just turned 3, my husband and I first noticed something was wrong when Ethan was 18mos.and he wasn't speaking. When he was 2 and only had about 30 single words we talked to his pediatrician and were referred to an Occupational Therapists.

She diagnosed him with Sensory Processing Disorder with a speech delay, she was able to tell that most of his behavior was because of sensory issues, where as I just thought that his behavior problems were just terrible twos and what I thought was just a very difficult personality because he had been very difficult almost from birth.

I have an aunt who works at a school for children with developmental disabilities and after my son got the SPD diagnosis she started to insist that that he was autistic because he acted just like every kid in her class and that the OT just gave him a SPD diagnosis because it was easier. Also that she (the OT) wasn't qualified to make a diagnosis, only a neurologist could do that.

To make a long story short the neurologist gave him a diagnosis of PDD-NOS which puts him on the autism spectrum. He specifically said that my son does not have autism but that since he is exhibiting some symptoms (mainly two- delayed speech and delayed imaginative play which have both seriously improved over this last year), he implied that my son would have a better chance qualifying for service provided by the government and also the therapy he's gotten so far is covered by my insurance. He also said that he would always have PDD-NOS but that he would eventually grow out of the symptoms.

The thing is the therapists and teachers at his school (including my aunt) consider PDD-NOS to be autism and I honestly don't believe in my heart that my son is autistic but that without a diagnosis on the AS that he probably would not get the help he needs for his sensory and speech problems.

Is this something that seems to happen alot and should I just let it be?

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PDD-NOS or SPD w/ Speech Delay

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Oct 21, 2009
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We're In the Same Boat
by: Anonymous

Our 2 1/2 year old has been given diagnoses of Apraxia, SPD, and PDD-NOS by three different specialists. Two specialists at one of the countries best hospitals said there is no way she has autism because she is too socially connected. The one mental health professional who gave her the PDD-NOS diagnosis said that our daughter was very "gray" and "quirky" and if she could say that she was "at risk" for autism and still get services, she would have. But the system doesn't work like that so she gave her the diagnosis and now we get all of our services for free.

I look at it this way: I know she doesn't have autism and I don't need to tell anyone but those who can make a difference in her life. The ABA that we get now because of the diagnosis has helped tremendously with her speech and SPD (they do lots of SI during session). So, to get by every day knowing that someone thinks my daughter has autism, I remember what the neurologist told me: almost all children on the spectrum have sensory issues, but there are children with sensory issues that don't have autism.

SPD is often misread in children because they can appear unresponsive or uncooperative, some "signs" of spectrum disorders. The neurologist also said that if our daughter didn't have a speech delay, no one would be giving her a second look. Take the diagnosis, don't tell anyone unless they can make a difference and exploit it to get your child the help he/she needs to improve playskills, speech and SPD. SPD is not usually insurable, whereas PDD is. And, contrary to what you've been told...I've been told that you can grow out of the diagnosis because you grow out of the symptoms.

One last thought: PDD may be considered a disability in your state giving you secondary insurance to help cover additional ST and OT visits. Take advantage of that and have faith that with this extra help, the diagnosis will be long gone in no time.

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Oct 21, 2009
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Submitted by: Anonymous

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Our 2 1/2 year old has been given diagnoses of Apraxia, SPD, and PDD-NOS by three different specialists. Two specialists at one of the countries best hospitals said there is no way she has autism because she is too socially connected. The one mental health professional who gave her the PDD-NOS diagnosis said that our daughter was very "gray" and "quirky" and if she could say that she was "at risk" for autism and still get services, she would have. But the system doesn't work like that so she gave her the diagnosis and now we get all of our services for free. I look at it this way: I know she doesn't have autism and I don't need to tell anyone but those who can make a difference in her life. The ABA that we get now because of the diagnosis has helped tremendously with her speech and SPD (they do lots of SI during session). So, to get by every day knowing that someone thinks my daughter has autism, I remember what the neurologist told me: almost all children on the spectrum have sensory issues, but there are children with sensory issues that don't have autism. SPD is often misread in children because they can appear unresponsive or uncooperative, some "signs" of spectrum disorders. The neurologist also said that if our daughter didn't have a speech delay, no one would be giving her a second look. Take the diagnosis, don't tell anyone unless they can make a difference and exploit it to get your child the help he/she needs to improve playskills, speech and SPD. SPD is not usually insurable, whereas PDD is. And, contrary to what you've been told...I've been told that you can grow out of the diagnosis because you grow out of the symptoms. One last thought: PDD may be considered a disability in your state giving you secondary insurance to help cover additional ST and OT visits. Take advantage of that and have faith that with this extra help, the diagnosis will be long gone in no time.

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Sep 09, 2009
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You are not alone
by: Kim Sullivan

My son has sensory processing problems but has the same diagnosis. There is no way he is autistic. We did so much intervention with him, daily constant things to work on his issues. He needed the Autism diagnosis to get the help he needs with sensory issues at school. The only problem is the insurance did not pay for any of his treatments we paid out of pocket and he is now uninsurable if we need private insurance, so I can't open my own business.

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PDD-NOS or SPD w/ Speech Delay

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