Isn't PDD-NOS Autism?

Avatar for budgies_mama
iVillage Member
Registered: 03-25-2003
Isn't PDD-NOS Autism?
8
Tue, 02-12-2008 - 11:56am

I went to an intake appt. with someone who was going to re-evaluate my son. He was diagnosed with PDD-NOS when he was 3. He's 6 1/2 now. Anyway, she said he doesn' have an autism diagnosis he

Pyzam Family Sticker Toy
 

iVillage Member
Registered: 03-27-2003
Tue, 02-12-2008 - 12:12pm

Well, our dx is PDD-NOS and we definitely consider ourselves to be on the autism spectrum. Now PDD-NOS isn't classic autism--not so severe.

                                

iVillage Member
Registered: 06-02-2004
Tue, 02-12-2008 - 1:53pm

Yes, PDD-NOS is on the autism spectrum. It drives me crazy that there are people in the medical and school fields who still don't get that. My youngest dd was dx'd with pdd-nos when she was three.

Amy~mom to Natalie (11 yrs) and Lily (5 yrs)

iVillage Member
Registered: 01-30-2008
Tue, 02-12-2008 - 2:53pm

I'm new to this board and wasn't planning on posting before I introduced myself, but here I am doing just that.

iVillage Member
Registered: 03-26-2003
Tue, 02-12-2008 - 7:49pm

Yellow Puppy is totally right, however, I have one caveat.

The lines between the more verbal end of autism, aspergers and PDD-NOs are so darned blurred that it is really impossible to draw a distinct line between them. Add to that the fact that no 2 children with autism are the same and a child that one doctor diagnosis as PDD-NOS another doctor will dx as autistic or Aspergers. I know, both my kids have all 3 diagnosis. They are old enough and have been through enough evals through school, insurance, etc to pick them all up at one point or another.

As my dh says "Autism is autism is autism" and it is, particularly on the more verbal end of the spectrum but even throughout.

Now there are definite differences between a child who has severe autism, is non-verbal etc, and a child on the aspergers end but there are many similarities as well.

BTW, My oldest dd's first dx was PDD-NOS when she was 4 because they thought when she gained enough language her social skills would catch up and they didn't want to cement ehr into one diagnosis or another. When she was 7 her language was just about age appropriate so another doc dx'ed her as Aspergers even though she had the early language delay. At her last set of big testing the neuropsyche the school hired diagnosed HFA (I HATE HATE HATE the words "high functioning and wish they would figure out another) but dx'ed HFA because Cait still met the criteria for an ASD AND she had an early language delay.

PDD-NOS is more of a blur however. I have seen a range of kids with that dx from non-verbal up to just sensory issues. Honest, I think it is a pretty useless dx that they use as the left over one.

Look at the criteria for autism yourself and see what you think. If you think he meets the criteria for autism start a list highlighting evidence as to why you think he fits the criteria and bring that with you to the diagnostician. Honest, if he is on the spectrum it is unfortunate but true, the actual word "autism" will help access more services more easily.

Renee

Photo Sharing and Video Hosting at Photobucket

APOV on Autism
Photobucket
iVillage Member
Registered: 12-29-2006
Tue, 02-12-2008 - 9:44pm

My dd hasn't yet been dx'd with anything but both the school psychologist and a privately paid psychologist mentioned that they see HFA signs as well (BTW, why do you hate the HFA label? I'm trying to educate myself as quickly as possible here!) and yet no one is really moving on this and they seem very hesitant to acknowledge anything because "she's so cute" or "so precious" and I'm sitting around wondering what that has to do with what my dd may be facing. Anyway, I digress.

I just wanted to mention that after all the hemming and hawing from the professionals, I showed the psychologist the DSM criteria for autism with an example or two for almost every single criteria in every category and asked him to please help me understand how this wasn't autism. He stopped rocking in his chair and sat up straight and took me seriously. He said if the school psychologist doesn't give a dx (because that one would be "free"), to come back and he would go through the process officially.

Laura
Isabella 1-4-06
Bryan 12-9-06

Laura Isabella 1-4-05 Bryan 12-9-06
iVillage Member
Registered: 03-26-2003
Wed, 02-13-2008 - 12:33am

wow, where to start.

Why I don't like the term HFA is a loaded question, but what the heck

1) HFA is NO WHERE in the DSM or any diagnostic handbook. It is just made up by lay people and totally subjective. It does not really exist. Maybe it is supposed to make some of us feel better (at least he is high functioning) but it doesn't really exist and there is no definite diagnostic criteria for what is HF.

2) I know lots of people and parents of people who would be considered the "opposite" of "high functioning" and I can't imagine anything more demeaning than to be called "low functioning". They are people, not appliances, which brings me to 3.

3) they are people, not cars, appliances or other machines. To rate a person by some innocuous scale as either high or low functioning kind of takes the human out of it, doesn't it? "Hey, look. I got a better deal, at least i got the high functioning model"

4) High Functioning is a lie. What does it mean? To many it means that there is an arbitrary IQ number over 70 or some fool thing. Thing is I know loads and loads of people with autism with IQ's significantly about 70 who cannot function independently in every day life. How does that make them high functioning? My son with a fairly high IQ (don't know the actual number cause he has scatter all over the board) can't function in a regular school and goes to a school for kids with special needs. My "lower functioning" nephew has been included for years and continues to do well. Because he does not have Mike's academic abilities does that make him lower functioning? Because he can sure function in more day to day activities than Mike.

5)(this is the personal part, lol) I am SOOOOOO damned tired of people meeting my son once and telling me "wow he is so high functioning" without even knowing him or his struggles. To put of his challenges as no big deal because he is highly verbal. I am sick of people reacting that he is being a brat or should control himself when he is melting down because they don't realize the significance of his impairment. This is a kid who is very significantly impaired in many many ways. Unfortunately this misunderstanding can be a curse because he doesn't fit with typical kids and these cracks make me feel like he doesn't fit with children with disabilities either (ya know like special olympics, etc. He definitely fits in special ed. He is considered moderate/severe handicapped)

Photo Sharing and Video Hosting at Photobucket

APOV on Autism
Photobucket
iVillage Member
Registered: 12-29-2006
Wed, 02-13-2008 - 7:23am

Wow! :) That was great - thanks!

I think in the past, I've used the idea or suggestion of HFA as more of a defense to friends and family that have given us serious garbage about how she's totally fine and we're just a couple of freak parents that have nothing better to do than find petty things that are just unique to my child's personality, so we can change who/what our child's personality is. **EYE ROLLING SO HARD I LOSE MY EYEBALLS SOMEWHERE IN THE BACK OF MY HEAD** When we say "possibly autistic" they scoff and we try to explain that not all people with autism are like what they saw in the movie Rainman. I guess I use it to try to explain the spectrum to people that don't understand, but your reasons for not liking it are all the reasons I'm regularly frustrated that no one sees how difficult life can be for my child who seems to do rather well if you just saw her for a brief period of time.

I completely see what you're saying about the flip side of the coin with the term "low functioning" as well - and I remember reading on Amanda Baggs' blog (an adult woman who also has autism - her blog is fascinating and eye opening to read her thoughts and opinions on the autism subject and I learn so much more about my three year old daughter's possible thoughts and opinions and reasons behind her behavior through reading her blog!) - anyway, she's explained several times how she isn't "low" or "high" functioning but she just does what she can each day - sometimes it's more, sometimes it's less than before.

When we first started really suspecting autism in my daughter almost a year ago, I was this raging parent against vaccines (my dd reacts BIG time to the hep B vaccine being hospitalized after each but that's a whole 'nother Oprah), read everything I could about DAN! doctors, did the GFCF diet for seven months and wanted a cure and was racing against time for it. SLOWLY, I've been rearranging how I see autism in general, for adults, other children, other families and for my child. It's not that I'm for or against vaccines anymore, or DAN! doctors or diets, but I'm learning a lot about how to truly see autism, how adults with autism feel about all this "awareness" being made the past few years and the panicked terminology about cures and how terminology and words really can hurt. Thank you for sharing your thoughts with me too!!

Laura
Isabella 1-4-05
Bryan 12-9-06

Laura Isabella 1-4-05 Bryan 12-9-06
iVillage Member
Registered: 03-26-2003
Wed, 02-13-2008 - 10:25pm

Totally agree. I have used that with people not in the know as well. I have also gotten the "They don't look autistic to me" which is very frustrating. Even from a special ed teacher I work with recently. She met Mike for less than 3 minutes. Mike was able to use skills he has learned to do the initial social interaction thing. Didn't make great eye contact but was pretty appropriate. But that was 3 friggen minutes. I hate people that make assumptions like that.

Today I observed a little boy who is "mildly autistic" and he was doing a dress rehearsal for a show. If he wasn't pointed out to me I wouldn't have picked him out as autistic but I saw him for less than 5 minutes and he was on his best behavior holding it all in. I could tell by his mannerisms after he was pointed out to me but I would never assume to say this boy "didn't look autistic to me" because autism doesn't "look" like something specific.

UGH. Rant done. lol.

Photo Sharing and Video Hosting at Photobucket

APOV on Autism
Photobucket