just curious...? for moms of kids w/PDD-NOS

[MomOf2DisneyKids]

Hi! Just curious....if you have a child with PDD-NOS, do you tell people that your child is autistic, on the autism spectrum, or try to explain what PDD-NOS is?
Just wonderin'... thanks!

 

[minkydog]

My child is not officially diagnosed with anything but a chromasome disorder, one that nobody's every heard of(Pallister-Killian syndrome). He is severely mentally retarded , non-verbal, walks off-balance, and has low vision & hearing. Rather than try to explain it to people I just say he's autistic(he's that too ) because that's his most obvious "difference." He doesn't have a "look" like Down syndrome kids, although if you knew what you were looking for you'd see he does look like PK. Autism they think they know. Most people may not understand it exactly but they know how to catagorize him and sorta what to expect.

 

[winniethepoohsmom]

My DS is 15 and autistic, when he was younger they said PDD-NOS, then it was PDD with autistic tendencies, then PDD with autistic features, then autistic. After getting used to saying it, it was easier to say he was autistic, less explanations needed.

 

[Tree]

I just say autistic for people not really in the loop about the autism spectrum. In support groups etc, I say pdd-nos.

 

[scojos]

pdd nos, what exactly is this? josh had a diagnosis of asperger about 12 months ago and i have read alot about this form of autism but dont know about pdd nos. sorry. i am nosy i admit it, but as knowledge is power and the more educated everyone is, the better it is for all our kids, so i hold my hands up to my ignorance, let the small steps start with myself
thanks
tracy

 

[jojosmom]

I usually tell people he has PPD-NOS, along with his other issues. then, I have to explain that PPD is in the austic spectrum range and he is high functioning like RainMain.

 

[Tinker*Shell*Bell]

My 11yo son is Aspergers Syndrome but to most people I would say that he is High Functioning Autistic.

As minkydog said -people think they know autism. Aspergers Syndrome is such a new diagnosis that many people have never heard of it. It takes less work for me to say HFA than to try to explain what AS is and the features of AS compated to true HFA...blah, blah, blah.....know what I mean?

 

[samkj]

pdd nos, what exactly is this?

Pervasive Developmental Disorder - Not Otherwise Specified is a 'subthreshold' condition in which some - but not all - features of autism or another explicitly identified Pervasive Developmental Disorder are identified. PDD-NOS is often incorrectly referred to as simply "PDD." The term PDD refers to the class of conditions to which autism belongs. PDD is NOT itself a diagnosis, while PDD-NOS IS a diagnosis. The term Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS; also referred to as "atypical personality development," "atypical PDD," or "atypical autism") is included in DSM-IV to encompass cases where there is marked impairment of social interaction, communication, and/or stereotyped behavior patterns or interest, but when full features for autism or another explicitly defined PDD are not met.

copied from http://www.med.yale.edu/chldstdy/autism/pddnos.html

 

[MomOf2DisneyKids]

thanks for the replies, everyone! I'd love to get more input, if anyone else is reading this thread!

 

[wiggles02]

We don't have an official diagnosis, but our 5 year old son is probably hyperlexic, which is on the spectrum. I don't tell people he is hyperlexic, that would be too much explaning, but usually say that he is high functioning autistic or on the spectrum.

 

[wide awake]

My DS was diagnosed w/ PDD-NOS and ASD on the same day...team diagnoses. I always say he is autistic. It always amazes me when people say "my child isn't autistic, he is PDD". It is the SAME thing, different name, and depends on the person making the diagnoses. I've seen kids much lower functioning than my DS, and the parents are staying safe w/ the PDD label. Look at the deficits, and work on fixing them...don't worry about the label. This isn't a Diabetes type I or II, where you can do a blood test....this is subjective, and some of the professionals don't know what they are talking about, or they're afraid to be honest, or don't think the parent can cope w/ the autism label. I really wish they would get rid of the PDD label...just say the kid is ASD...and I wish there were definitive markers for high vs. low functioning...age of potty-training, receptive and expressive vocab, etc...

 

[sleepingbeautymama]

My dd was diagnosed with Sensory Integration Disorder but we also know she is somewhere on the Autism spectrum, just not officially diagnosed. We've been told by her therapists that most likely she has Asperger's Syndrome. As of right now I usually tell people she has sensory issues. With family, we've told them about the Asperger's Syndrome and being on the Autism spectrum. There have been times in public where my dd has had encounters with strangers where I thought of telling them she has Autism but I've yet to do that. I notice most people who haven't been affected by Autism really have no idea what it is. They only think of the severe form. I know when I first started talking with my family about Autism, they thought I was crazy. Now they do understand that there is a spectrum.

 

[playwright]

People think of the "Rain Man" stereotype and DS was diagnosed as autistic (also LD and ADD w/o hyperactivity) but only he is only like that character in some social respects. And most of those behaviors have discontinued. I don't know how to explain it. Some people assume he has Down's Syndrome although I don't think he looks like a Down's Syndrome child. I am pretty upfront about his diagnosis because I have found some people think autism (and other conditions) are things that would just "go away" if parents did things differently. A parent of an NT child asked me if autism was "inborn". What I don't know how to deal with is the questions and comments that follow after I've given people the diagnosis. "Did you smoke or drink?" "It's hereditary, you know" "Oh, he's just quiet like you. He just needs to have more playdates, etc." "It's all that sugar you give him" (He's not hyper, he's withdrawn and he doesn't have a lot of sugar.) "He just needs to study harder. My kid is on the honor roll, etc." (I love that one. They flip out if Junior gets one "B" to pull down his perfect average, and we are proud of DS just for his struggle to do his best and go ahead to the next grade. I have nightmares about this.) FIL told me DS was autistic because I gave all my attention to my new (NT) baby, which wasn't true. Now that he is a teenager and has become more outgoing and isn't attached to my hip anymore, it's gotten better. Why do people want to know anyway? Are they geniunely concerned about your child or are they just being nosy? I think it's helpful certainly to share info with your child's teacher and give the diagnosis to other parents who are in a similar boat, because they can say "oh my DS was diagnosed with that also, we found Dr. so and so or this therapy helpful..." and then you can help each other - and they can relate whereas many "NT" parents (even those with PHds) just don't get it. Good luck.