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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Aug 22, 2011
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I have the same thing with my 4 year old
by: Heather

I was told the same thing by the psychiatrist that evaluated my son when he was 3 for the Child Find Program thru the county I live in. She did the C.A.R.S test on him and said he had markers for autism and was diagnosing him with autism so he would get the funding and help he needs. He is speech delayed to the point where at 4, he still only has a couple of words and the speech he does have is very hard to understand what he is saying. She also diagnosed him with multiple learning disabilities because he has problems with receptive language. He went to ECI for the 2010-2011 school year and we have seen a lot of progress with his receptive skills and he is trying harder to communicate with us now also. I don't really agree with the autism diagnosis. He doesn't stim, he makes eye contact, he has no issues with color grouping or any traits like that. He doesn't have to have any special routines, although he does miss school and does better when he has that routine on a daily basis. And he is a very lovable and social child. He doesn't understand about others personal space and gets right in your face when he is trying to be social with other kids, however I have read that kids don't understand about others personal space until the age of 5 so I don't think that is an issue at this time. I accept the diagnosis on paper if it will help him get the help he needs with his learning disabilities, but in my heart and mind, I don't really buy it that he is autistic. Sometimes it is easier for me to buy into it just so I have an explanation for his speech delay, but I just don't see the signs that th psychiatrist sees.

May 20, 2011
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keep fighting
by: kcf333

Don't stop believing in the SPD diagnosis. If you don't think you have a child on the spectrum but they have behaviors that overlap autism, then you are most likely right! Many psychologists will not take the time to educate themselves on what has been evolving in the world of sensory integration dysfunction. They will have no choice when it becomes a diagnosis. Many of the kids on the spectrum will come off of the spectrum. My child has sensory issues, speech delay, dispraxia, hypotonia, and more but is very socially connected. She has no trouble getting services for Speech, PT and OT due to delays so I will not sign off on ASD. If I had to take a PDD diagnosis to get her services I would but I wouldn't go down without a fight! Labeling a child because they can't figure them out is NOT an answer! Keep teaching your school districts and therapist and giving them therapy at home for sensory issues! Them more they hear it the more they have to listen!

Mar 05, 2011
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Thank You
by: Anonymous

Dear Anonymous "We're In The Same Boat,"
I want to thank you for your posting. My 4 yr old son was just diagnosed with PDD-NOS in Dec. He has language delays and sensory issues.... that's it. While we qualified for early intervention, he did not qualify for the 3-5 intermediate unit's support. As time passed without therapy, his quirks became more noticeable.

I took him to a Dev. Ped. and she said he is "very borderline" but that if she doesn't give him this diagnosis he will continue to get passed over for support. I have been so ripped up inside that I allowed a diagnosis that carries such a heavy stigma to be placed on my child. He is quirky, but he is in no way on the spectrum. I turned to the internet to find some insights about similar situations to mine and I found your post. Your perspective is so wonderful and appropriate. It made me remember what my end goal has always been (to help my child) and not to get hung up on labels.

I want you to know that I have actually printed out your response and keep it in my wallet for times when I lose my focus. All in all, whatever it takes for my child to have his best life, that is what I will do. Thank you for your calming words of wisdom.

Nov 24, 2010
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help for initiating diagnosis
by: Anonymous

I have been telling my pediatricians since my daughter was 9 months old that she just seems different--never wanting contact with other children, an unusual tolerance for pain, extreme tantrums, extreme shyness and anxiety around others, inconsistent reactions to loud noises and textures, language delay, and unusual need for rough play. However, the doctors never seemed concerned, probably seeing me as an over reactive first time mom. We even had her tested by our state's early intervention program who found her "shy" and ineligible for services based on the testing. My husband and I were happy at the time, but we took her out of her large daycare center, as it caused her so much anxiety, and placed her in an in-home daycare setting (with two other children her age). Our daughter is now three years, two months, and it seems that the gaps between her and her peers are growing. Her daycare provider and many of my coworkers (I am a teacher) suggest autism, but I believe her issues are more sensory-related. We have a meeting scheduled with our school district's child study team to see whether she would qualify for an evaluation. I'm afraid she won't qualify again. Seeing that SPD is not in the current DSM, should I focus on those behaviors that align with PDD in order to at least hope for an evaluation for my daughter?

Sep 29, 2010
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Suffering the same issues
by: Anonymous

For all of you have responded, you've been a big help! My son is 3 1/2 with SPD and ASD; we have been told most likely Aspergers,but the public school system and his OT do not see ASD. Only SPD. With his ASD diagnosis he can get services through the state but we are battling for services with the school. So just like you, we are getting mixed diagnosis. Anyone have any ideas on how to get public school services?

Beth

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.

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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PDD-NOS or SPD w/ Speech Delay