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Old 04-08-2009, 08:41 PM   #1
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Pervasive developmental disorder? *long*

A bit of background. When DS was about 7-8 months old he started to crawl, and almost immediately started to rock back and forth on his hands and knees. I didn't think anything of it.

Then when he was about 16-18 months old I started to get concerned about his lack of verbal skills. At 18 months I could count on one had the amount of words he had. He would learn a new word, repeat it constantly and then we wouldn't hear it again for months.

He was always ahead of himself in regards to his motor skills. Walking by 11 months. CLIMBING all over everything soon thereafter.

When he got a bit older he had terrible tantrums where he would totally lose it and slam his forehead onto the ground. I was terrified to go out in public with him in case he lost it in a parking lot and seriously hurt himself on the pavement.

He didn't gesture at all.

He wouldn't look in the direction you were pointing in.

He lined his toys up and then moved them all one by one to a new place, all lined up in rows.

He didn't answer when you called his name.

He was not snuggly, did not come to me to sooth him when he was hurt. He was never, from birth, comforted by me picking him up and cuddling him.

If he was hurt/upset he would go find a chair and bounce and chant ( I can't think of a better word) rather than come to us for comfort.

My biggest concern was Autism, and that concern was backed up by both my mother and sister.

Fast forward, now he's three.

He has improved A LOT. He's been speaking in sentences for about the last 1.5 months. It was like he didn't GET that he could communicate with us and then one day it just clicked. He can say all his colors, shapes, ABC's and recognizes quite a few letters by sight.

He's started to come to me when he gets hurt and started to snuggle and be affectionate.

He still bounces, still likes to line his toys up.

He's social with kids when we have playdates.

When we went to the pediatrician last week he said once again, he's not Autistic, he's very active. Which I already know.

He did say, however to that Pervasive developmental disorder is something that we could be looking at?

Is anyone else dealing with this non-diagnosis? When I did a bit of reading I just felt like somebody turned a light on in my head.


Sorry this is all jumbled up, I just needed to get this all out. Thank you for reading if you got this far.

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Last edited by daisy0306; 04-08-2009 at 08:43 PM.
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Old 04-09-2009, 10:10 AM   #2
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Re: Pervasive developmental disorder? *long*

nobody??
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Old 04-09-2009, 09:09 PM   #3
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Re: Pervasive developmental disorder? *long*

Are you talking PDD-NOS? That is definitely a diagnosis. It is on the Autism spectrum. A lot of younger children are initially given that diagnosis. Sometimes the dx changes to Autism or Aspergers when the child gets older.

He does sound like he is on the spectrum. My child has been dx with PDD-NOS. He was initially dx with Autism (age 2) but it recently changed this year. In a few years, his dx may change to Aspergers.

Sometimes it depends on who is giving the diagnosis. Kids who have Aspergers are typically not diagnosed until later (at least around age 6 - 9). I have found children who are dx earlier, initially have the dx PDD-NOS. Aspergers, PDD-NOS, Autism - they are all on the spectrum but each looks a little different. Regardless, all children on the spectrum look different - not one presents in exactly the same way. My son went from no babbling, no desire to communicate (wouldn't even hand me items), hardly any eye contact and didn't really even want to snuggle to being sociable, very talkative and extremely high academically. The way he interacts with peers is just a bit different. The activities he enjoys doing is "sometimes" different. He talks a bit different compared to his peers. He is a bit quirky but I love him and couldn't imagine him any other way!! I have learned personally that a change in the presentation doesn't make the disorder disappear, it just causes parents to become more confused about the diagnosis.

I am not saying your son is on the spectrum but from everything you described, he does sound like he has some of the characteristics. Definitely seek out a specialist.

You can consider what the pediatrician says but I have found that most pediatricians have a vague knowledge of the disorder. They are not specialists in the field. They are only seeing you and your child for a short period of time and then giving you their opinion. Then again, you are in Canada so perhaps it is different there than here.

I would strongly encourage you to seek out a developmental pediatrician, especially one who specializes in Autism Spectrum Disorders. In addition, look for a psychologist who also specializes in the field. The developmental pediatrician doesn't do any standardized assessments but they usually have more in depth knowledge concerning Autism and other disorders. They can provide the medical diagnosis of Autism and then they usually refer to a psychologist for further testing. A speech pathologist may also assist as they specialize in communication disorders. I encourage you to go with the team approach.

Last edited by ladylee; 04-09-2009 at 11:27 PM.
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Old 04-09-2009, 11:29 PM   #4
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Re: Pervasive developmental disorder? *long*

Confused - so the doctor said "He is not Autistic, he is very active?" That completely doesn't make sense as a lot of children on the spectrum are active. Many children on the spectrum are also initially dx with ADHD and then later they are dx with Aspergers. If your doctor actually said that, he really lacks knowledge in the field. I am sure he means well, though.
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Old 04-10-2009, 07:43 AM   #5
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Re: Pervasive developmental disorder? *long*

I just wanted to add, that one of the main components of autism is a significant delay in language. Since he has language (even though just recently), that is probably why the doctor said it was not classic autism, but may be on the spectrum. But like ladylee said, I would try to find a specialist. If you are not already working your county early childhood special education program, I would encourage you to contact them.
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Old 04-10-2009, 09:29 AM   #6
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Re: Pervasive developmental disorder? *long*

Thanks mamas. We have been working with early intervention and speech since he was 18 months old.

ITA about the language, he's been picking up language in leaps and bounds for the last 6 months or so. It's like it just clicked in his head one day that he can talk and get what he needs. You can *almost* have a real conversation with him

The amount of improvement in his language has made me really second guess my initial autism worries. Then I watch him bouncing and lining up his toys and I second guess myself again. LOL. I believe that he is on the spectrum, but we also have a family history of rocking, headbanging (his Daddy rocked, my mother banged her head) and delayed speech. All 3 of my nieces and nephews on DF's sides were very late talkers. Sometimes I just think that he just a quirky kid.

ladylee - thank you for the info and the PM, I'll write back to you asap
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Old 04-10-2009, 12:40 PM   #7
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Re: Pervasive developmental disorder? *long*

I am glad that you are working with early intervention. That is great, whether he is on the spectrum or not. You are doing great things for him. Sometimes it does come down to a wait and see kinda thing, which is the hard part. But it sounds like you are doing all the things you need to do, while you wait.
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Old 04-12-2009, 03:39 PM   #8
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Re: Pervasive developmental disorder? *long*

Wow, your DS sounds so much like my DS2, also 3. He had a big jump in vocabulary after we started Signing Time dvds last year, and then another big jump in speaking this January. I heard our first FULL sentence today: "No, no blue, Is a yellow egg." We had a speech eval in January, but the SP thought he was doing fine for being his age. He had a score of 20 with a cut off of 19.

For the last two years, we've called him the Hulk because of his anger outburts. He's also a headbanger, and then DH gets mad at him and says he's going to make himself "retarded." Also like your DS, he knows all of his letters, colors, numbers, has some sight words. DH told me today that I'm "holding him back" because DS will say his letters all day. He gets like a broken record. I gave him some food that was too hot this morning, so he HAD to spend the next five minutes signing 'hot' on me. Start his favorite movie (Finding Nemo) and he HAS to say Nemo over and over. Sometimes he'll move on if you repeat him, sometimes you have to respond ("Yes, we are watching Nemo. We love Nemo." etc.) - or he might keep repeating anyway. And he craves vestibular motion.

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Originally Posted by ladylee View Post
I would strongly encourage you to seek out a developmental pediatrician, especially one who specializes in Autism Spectrum Disorders. In addition, look for a psychologist who also specializes in the field. The developmental pediatrician doesn't do any standardized assessments but they usually have more in depth knowledge concerning Autism and other disorders. They can provide the medical diagnosis of Autism and then they usually refer to a psychologist for further testing. A speech pathologist may also assist as they specialize in communication disorders. I encourage you to go with the team approach.
What do you recommend as far as going about finding a dev. ped? Are these usually covered by insurance? I already know DH won't let me go after anything not covered by insurance I've never worried about autism, but I have wondered about PPD-NOS and SPD.
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Old 04-13-2009, 12:48 AM   #9
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Re: Pervasive developmental disorder? *long*

Do you live near a children's hospital? I see you l.ive in Oklahoma and have no idea how close you live to University of OK. Here is this link - http://devbehavpeds.ouhsc.edu/autism.asp

Even if you live far from there, I would still call up the office number and request info. for someone in your area. The Autism community stays fairly close together. Usually it is covered by insurance since it is covered via regular doctor's appt.
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Old 04-13-2009, 08:34 AM   #10
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Re: Pervasive developmental disorder? *long*

Developmental Pediatricians do use standardized tests. I think it's called CARR, but they also use the Bailey Developmental Scale.

Have you looked up the criteria for autism in the DSM-IV-R? That is THE diagnostic criteria for autism. My son was diagnosed with PDD-NOS at 20 months because he met 5 of the 6 criteria for autism. The 6th could not be tested because of his age. At just over 2 he was diagnosed with classic autism. You can see either a Developmental Pediatrician, a Neurologist, or a Child Psychologist to get a diagnosis. I prefer Devo Peds because I just think they have a more detailed knowledge base, and they can give you some good ideas. Your general Ped should be able to refer you, and should know who is covered by your insurance. They refer a lot, so it is part of their job to know who is who in the area.
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