Difference Between PDD-NOS and Autism?

Updated on March 17, 2009
D.C. asks from Carver, MA
14 answers

I just went for a developmental pediatrician visit last week, and walked out feeling great. The doctor said that she felt my sons issues were language delay and that he didn't have enough characteristics to diagnos him with autism. I thought wonderful, now we work on his speech even more. Then I got the letter from the pediatrician saying that she might be leaning towards PDD-NOS. All information I have found says that pdd-nos is a form of autism. I just feel like everytime I think I am catching a break someone is pushing me back down. Some days we all just need to be on our pitty pot guess today is mine. Just a little more info, on top of my sons developmental issues my almost ten year old has moderate to severe Crohns disease and was just in the ER at childrens all day Friday. Any info would be very much appreciated.

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P.H.

answers from Boston on

I do not know the difference between PDD, but I wanted to speak to you as a parent of a preemie who has had many delays..you may feel that you wanted that RX and that speech is his only issue..but you need to bone up on everything they are giving you and start making all progress towards all of it..it is so hard having a child who is not on any of the charts, not speaking and having issues, but once you know what the issues are ..run with it and do what you need to.

I hope I am not making you defensive, I do not mean too, but you have 2 normal girls and a boy who needs all the extras to get him up to speed..my son did not walk until 19 mos, talk until near 3 and has had PT, OT & ST..he is 5 1/2 now and still gets OT & PT and he was only 6 weeks early!

Try not to look for the lesser RX, but see what fits him and his needs..speech will be wonderful as when he can fully talk to you and share his world..it makes so much difference.

Good Luck,

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L.D.

answers from Boston on

Please look into food intolerances/sensitivites in both your children. Specifically wheat/gluten and sugar. I am a health counselor and specialize in food intolerances and it sounds like this may be true for you, especially since crohns disease may be in the picture. Consider taking your children to a Naturopathic doctor. Omitting wheat/gluten and/or sugar and incorporating supplements like fish oils and probiotics may be the key for you. Good Luck!

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S.Q.

answers from Boston on

D.,
Autism Spectrum Disorder, Asperger's and PDD are all stand alone diagnoses in the Pervasive Developmental Disorder category and all are significant labels. A language delay alone should not land you in one of these categories. All of these disorders have social communication difficulties associated with them, such as impairments in establishing peer relationships and/or development of pretend play, along with other defining behavioral characteristics. Presentation in any of these categories can be subtle, especially in someone as young as your son, and diagnosis is best accomplished by a round of evaluations with multiple disciplines. My recommendation would be to pursue a second opinion evaluation with a team that includes a speech language pathologist, neuropsychologist, and developmental pediatrician, in addition to pursuing services through your local school system. Such teams are available through local pediatric hospitals and private practices. Regardless of the label a thorough evaluation would provide you with detailed information regarding your son's strengths and needs, as well as recommendations for medical (gut issues?), developmental and educational purposes. There are many good support organizations available in MA, including the Autism Center/SNARC in Westwood MA and the online listserve Common Bonds (through yahoo I think).

This is what I do professionally; I would be happy to chat more if you like. Take care of yourself now too, and continue to keep your son's positive progress as the bottom line. S.

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D.C.

answers from Boston on

Hi D.,

PDD-NOS is Pervasive Developmental Disorder. It is the category/diagnosis that kids fall into when they are exhibiting social deficits, but the doctor is not sure of the extent of the disability. It is in the autism spectrum along with low-functioning autism/mental retardation, high-functioning autism, Aspergers syndrom and non-verbal LD. Contact your local school district with the letter saying your son is PDD-NOS and get him into an intervention program ASAP. The sooner the lessons start, the better for the long term prognosis. The lingo you will hear is he needs a FBA Functional Behavioral Assessment and based on that, an ABA Applied Behavioral Analysis. Check out some of these web sites for more info. www.autismspeaks.org www.firstsigns.org

My son is 14, Aspergers/Non-verbal LD and I am in grad school taking a special needs class (last week's topic was Autism).

Good luck, write is you want more info.

D. C

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D.M.

answers from Barnstable on

Dear D. C,
I understand your frustrations and concerns. Many parents are dealing with similar issues. I work with medical practices to help them integrate nutritional interventions into their practices. My company has recently launched a line of natural highly bioavailable drinkable vitamins for children who fall anywhere within the autistic spectrum. Scientific studies have revealed profound results. In addition, we have nutritional interventions that also address Chrons disease with positive results. If you'd like more information I would be happy to provide it.

D. M (Yes, we share the same name)

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S.F.

answers from Boston on

PDD-NOS is one of the five disorders on the autism spectrum. I just read a really terrific book called Demystifying Autism Spectrum Disorders. I don't know the author's name but it's part of a series called Topics in Autism, available at the library, copyright 2004. It really helps to understand the spectrum and what a PDD-NOS diagnosis means for your son. Good luck with everything!

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S.P.

answers from Portland on

Another name for PDD is Aspherger's Syndrome. Basically what this boils down to is "high functioning" autism. It means that your son does not have enough characterisitics to qualify him as autistic but that he does have enough characteristics to wualify him for something. This is good news since there is a wide spectrum of disorders that fall under PDD and there is a lot of help. High functioning autistic children face obtacles but that doesn't mean that they cannot function in society. It'll be hard but if he gets the help he needs, he can go to college and lead a normal life. Ask your doc to refer you to a neurologist and psychologist to confirm. The more second opinions the better.

Good luck!!!!

C.

answers from Hartford on

PDD-NOS is at one extreme of the autism spectrum. It is the mildest form of Autism and can be outgrown. If there is only a language delay, it is odd that the pediatrician would use the PDD-NOS diagnosis. I think you should ask your doctor why she went with that diagnosis. I think there are two possible reasons. First, with such a diagnosis, you will be able to get more and better services from the state. Second, there may be some other behaviors that concerned the doctor of which you are not aware. Please don't feel pushed down. The label is not what matters but the treatment. Having a language delay or PDD diagnosis should not change how you feel - it is just another problem to tackle either way you look at it. Besides, there are so many children that go undiagnosed and when the problem does get noticed, the ability to help those children has greatly diminished. You should be happy that your doctor wants to make the right diagnosis. Good luck.

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T.S.

answers from Portland on

I suffer from Ulcerative colitis and found a book "Breaking the Vicious cycle." It's all about diet and the way foods can affect your body. The diet is a little tough to follow but it really has done wonders for me. It also talks about the autism connection. It may be a way for you to help both your daughter and son at the same time.

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S.A.

answers from Boston on

Don't get caught up in the labels because PDD-NOS just means that something is going on and it's not yet fully understood. I always describe it like when the Dr. tells you you have a virus. They really don't know EXACTLY what's wrong, but they have to say something to describe it.

The label will in fact help you get the services you need for your son. At three he should be getting speech services from the public school and you can certainly request evaluations. You should also contact your local Special Ed Parent Advisory Council. It's like a PTO for parents of special needs kids. Every town should have one, but many do not. Framingham has one and you can find them at www.f-sepac.org. The web site has lists of support groups, events, and lots of resources. Good luck.

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A.W.

answers from Boston on

Hi there,

My son also has the diagnosis of PDD-NOS, Autism Spectrum Disorder. Under the Autism "umbrella," there are several disorders, including PDD and asperger's. Your best bet is to see a neurologist. We saw two neurologists when my son was 2 years old. One said that he just had a speech delay, the other diagnosed him with PDD. We went with this diagnosis and are so glad we did. The quicker that you get your diagnosis the quicker you can start receiving services, which should include speech, occupational therapy, and ABA (Applied Behavioral Analysis) therapy. There are many resources out there for autism now, including the Autism Alliance of Metrowest, if you need more info.

It is very hard to deal with receiving this news, I know - one of the toughest things in my life, but the sooner your son gets services the better he will do. My son is now 8 years old and is doing very well. Good luck!

A. W.

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J.C.

answers from Providence on

I'm not a doctor, but I some schooling in psychology and PDD (Pervasive Developmental Disorder) was considered as a possible diagnosis for my son. My understanding of PDD is that it is a catch all diagnosis for kids who have "something" going on - such as a language delay or some peculiar behavior - but they are not severe enough to be clearly autistic. It is a logical diagnosis for what you describe with your child. PDD is the mildest label for the spectrum autism disorders that you can have. As suggested by your pediatrician, it is less severe than the autism label (I believe that Autism, Aspergers and others disorders are pervasive developmental disorders - PDD is the umbrella category) It is also a diagnosis that can be grown out of - so your kid may be labeled with it right now, but in a few years when those verbal skills kick in, the child may not have it anymore (or, if the child is still struggling, there may be a clearer, more specific diagnosis that will be utilized). This is my take on it, once again, being a fellow mom who is not specifically trained in this. Good luck and keep on working on that speech! :-)

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C.G.

answers from Burlington on

Hi D.,
My son Nathan who is 5.. has lots of issues.. sensory issues are huge, as well as communication, etc.
We are having him evaluated by Easter Seals on April 1st for an official diagnosis.. which we are pretty confident will be on the Autism or PDD spectrums or a Sensory disorder.
Since april 08.. he has had sleep issues.
And in the last 5 wks.. has hit a wall.. digressing in so many areas.
I would love to talk to you more.
Email is: [email protected]____.com

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M.H.

answers from Springfield on

you should check out the book Gut and Psychology Syndrome by Natasha Campbell McBride. It is pretty illuminating about the connection between the gut and psychological disorders. She says that she practically cured her son from autism by radically changing his diet adn restoring his gut health. With a child with Crohn's and this younger child, you may find value in this wonderful resource.

Good luck,
Mara Hahn

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