Pervasive Developmental Disorder

[kreamkrackers]

Just came across this.

Pervasive Developmental Disorder - Not Otherwise Specified, or PDD-NOS, for short, is a condition on the spectrum that has those with it exhibiting some, but not all, of the symptoms associated with classic autism. That can include difficulty socializing with others, repetitive behaviors, and heightened sensitivities to certain stimuli.Those with PDD-NOS behave like those with classic autism in many ways.

How would we know the difference between what our daughter's displaying and this? She has special needs anyways and say they can't check her yet for autism. I'm getting more confused with everything. She displays all autistic signs and some professionals think she might be yet others don't including her special needs nursery teacher. If you read the thread on her about DiGeorge you'll see why I think she is autistic.

This is only dx'd when they've ruled out an ASD, because it's for when they don't think they tick all the boxes.

What do they mean when they say they can't check her for autism?

The ADOS test, which is the international gold standard for assessing for autism, can be used from very young - there is a pre-linguistic version.

I would ask for that to be done.

They've told me as DD1 has special needs already it's much harder to tell. DiGeorge children can come across autistic but it isn't always autism. As she gives eye contact and mimiks well it makes it much harder to tell apparently. Both me and her Dad feel she is autistic and anyone who spends more than a couple of hours with her feels this apart from her nursery teacher and as she's at a sn school then what they say kind of goes as they know autism more than we do. I feel so confussed. It might be American. I was searching autism and came across this and thought this might be her. It's hard waiting. I'll try to talk to nursery again about how I feel.

I think the dx is only used in the US but I'm not sure.I think there is debate on whether it is a useful term or whether it is 'best' to say it is all autism although with widely differing presentations and outcomes. Some US parents have said that they felt pleased when told their DC was not autistic but PDD NOS - but then realised that the outcome and the future is often just as uncertain.

DD has just been dx,d as PDD-NOS by a private asessment we had done a few weeks ago.

We go to CAMHS on tuesday for her to be asessed (needed the private one as at tribunal in 2 weeks and CAMHS waiting list was too long at the time)

DS, official dx from CAMHS is PDD, although they and a private psych both said he is AS, some clinicians use ASD some use PDD, i wish they,d all use the same flippin one as its very confusing, at the end of the day both my 2 are on the spectrum albeit with different dx,s.

I've heard that sometimes in this country the specialists use the term 'atypial autism' instead of PDD NOS.

We had a great deal of difficulty getting J's dx. His first assessment was inconclusive even though he'd scored very highly on ADOS and his paediatrician said she was 99% certain he was autistic. But in the end when they weighed up all the tests he didn't fully meet the criteria for ASD although he certainly ticked most of the boxes. Instead of giving a working dx of PDD NOS (or atypical autism, or whatever) J was treated as normal until proven otherwise, which took us another year and a specialist assessment.

Getting a dx can be a minefield, and it seems that labelling often depends on the individual consultant.

ditto karen, been there and done that with ds, took us 2 years to get the nhs dx for ds during which he wasnt in school and they were all arguing amongst themselves about what he had.

on dd,s report from the private psych it says significant indicators of an ASD in her profile which would meet the criteria for a typical autism or PDD/NOS.

be interesting to see what camhs say tomorrow.

It seems it's going to be very hard to get her diagnosed. I know that in our local area there are a lot of mum's who say their child was diagnosed much later than he/she should've been. I keep hearing about early intervention helping so why do they take so long?

This is all so draining, we have so many problems with DD1 and we have to battle to get everything for her. I had to do get her portage, get her in our local CDC, take her for all the assesments to get her in the sn school when it's clearly obvious she couldn't go to mainstream, I still have to push and her specialists into seeing her. I'm fed up. She has a diagnoses od DiGeorge and lots of health problems and learning disabilities that have come from that so why has everything been so hard to get? Having a sn child is hard enough but to have all the pressures of chasing everything up makes it so much harder. Things need to change.