does pdd-nos always become autism? help!

iVillage Member
Registered: 04-06-2003
does pdd-nos always become autism? help!
2
Tue, 07-08-2003 - 11:48pm
Hi all,

I'm new to this board-- my DS (age 2.5) was just diagnosed with PDD-NOS two weeks ago. Someone mentioned to me that her DS was originally dx with PDD-NOS, but then it changed to autism (in the regular sense, I guess) when he was 3. She said everyone is dx with PDD-NOS at first because tests for autism before age 3 aren't really accurate yet. Is this true?

From what I understand so far, PDD-NOS is high functioning, atypical autism. I fully expect that my DS will be able to care for himself and live a great life. And yet, after hearing that diagnoses can shift and reading some articles, I am worried-- almost panicked-- that things will get much worse for him. I am worried that he'll have to start some medication or that he'll somehow morph out of his sweet temperament and into an out-of-control kid.

Being new to all this stuff, I am still at the stage where I am trying to take things one day at a time. I am so sad some days when normal things like getting dressed take so long because my DS has some little hang-up, or when we go out to a playgroup and he just stands in the corner. But still I'm optimistic that it won't always be this way for him. I know he will be okay, my gut tells me so. It doesn't matter what anyone calls it, I would take 10 more kids exactly like my little guy-- diagnosis and all.

Could someone please offer me some hope that things can get better for kids with PDD-NOS? I have decided that God must have a special purpose in mind for my son, and I have agreed that I would trust in my faith to get me through this difficult period. But I really need some encouragement right at the moment-- a winning success story, something to aspire to and pray for.

Thanks for listening...

Cathy


iVillage Member
Registered: 03-26-2003
Wed, 07-09-2003 - 1:36am
Hello,

While it is true that it can be tough to diagnose children who are very young, it is a miss understanding that doctors will always diagnose PDD-NOS under 3 because there is no accurate test. All children with PDD-NOS do not become autistic, although that is not saying that it can't happen. The thing is, we don't often know how children will develop and while some may develop more significant symptoms, others do remarkably better with age and may loose many symptoms. Doctors were reluctant for years to diagnose children that young because they may not have as many symptoms older and the diagnosis of an autism spectrum disorder may be incorrect. Doctors are more willing to diagnose children younger now becuase they realize that earlier diagnosis leads to earlier intervention which is very beneficial. Diagnosis can sometimes change with age because some symtoms may change, that is why it is a spectrum of disorders.

So short answer, no one knows where your son will be in a few years or as an adult just yet. However, you are doing the right things and there is still a lot of hope that he will make tremendous progress. I think you are taking a wonderful attitude about it.

Just wanted to share my experience. When my Cait was little (oh 3-5 years or so). I was so worried that she would never participate in regular things with regular kids, be able to live independently, learn to care for herself, or have a real conversation with her. Boy was I wrong! She is mainstreamed going into 4th grade. She tested highest in the district for GATE (gifted and talented program) Of course it was a visual test, her area of strength. She just finished her first show in a childrens THeatre production with all typical peers. Now she still has lots of skills she needs to work on and much room for improvement, but everytime I see her do something new I think back to those times when I never thought it would happen. Boy does it feel good to be wrong! And as far as conversations, the girl talks my ear off and goes everywhere with me. My little side kick. Her diagnosis did change from PDD-NOS to Asperger's. Though I think they both fit and go with autism spectrum disorder.

HTH

Renee

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iVillage Member
Registered: 03-26-2003
Wed, 07-09-2003 - 7:56am
Welcome to the board Cathy!

It sounds like your still going through the initial emotional turmoil of the dx. And not knowing the ins and outs of the Autism Spectrum can be pretty confusing and frieghtening too. When we're still new to this it's like facing the monster we don't know....not sure if it's gonna be a funny fluffy sort of thing or a big razor toothed beast.

When I was reading your post I started to put my 'dr' cap on.....but Renee beat me to it...again, LOL. She does a great job of explaining things. If you have any other questions feel free to ask.

Don't let all the articles and stuff scare you. Life with an ASD isn't as bad as it sounds. At least, not on the higher end of the spectrum. My husband has AS and I have 3 dds who are also ASDs. My 8yo, Jade (boarderline between AS and HFA) is my lowest functoning kiddo and she's quite happy. We did have a few hard years with her, but I think that was mostly due to the fact that we didn't really know what was going on with her. She had been born 9 weeks early and the drs said she had recieved brain damage from the tramatic birth and that she would never be more than a 'half-vegitable'. When she was 3 it became apperant that they were wrong. She was starting to talk and communicate. At 5 she was dx'd MFA. She made so much progress that year that her dx was adjusted to HFA. And last year she was adjusted again to AS. She keeps climbing higher on the functionality scale. She keeps displaying cognative abilities she didn't seem to have before and a few months ago she was dx'd by an Ed Psychol as being an Autistic Savant in the fields of Earth Science and Cosmology. If it has to do with the building of a planet she has probably studied it.

Is there hope for the normal set of higher functioning ASDs? You bet there is! My DH is a great guy and he leads a relatively normal life. I personally believe Aspies (an endearing term used to describe people with PDD, AS, and HFA) make great mates. Dh is the most patient man I've ever met... well, most of the time, he IS a man after all. LOL. And he is very accepting of my character defects. He will put his foot down if I start acting too 'out there' though, he's no fool. But he has this wonderful niavity about him that makes everyday life incredably refreshing. He doesn't play head games, I don't think he really knows how. Which is just fine in my book. People are usually shocked at the fact that with him what you see really is what you get andhe can't be manipulated into doing something that he knows is wrong. He's honest through and through and is a good God fearing man. The kind you deffinately wanna take home to Mama, LOL. He has a normal job in the blue collar field (HVAC) and is the proud papa of 6 dds. He has fishing buddies and people he likes to play cards with. He doesn't get into 'hangin out with the guys after work' like some men do. But that just means he's home with me and the kids instead of out gallavanting around town or hanging out at some bar. Again, just fine by me.

Chin up, life is too precious to obsess on 'what might be'. It' good to worry about your ds's future and plan for it now, but there's only so much you can do. Like you said, God created him this way for a reason, even if that reason isn't clear yet.

Peace, and keep coming back,

Candes

Peace,
Candes