Could my son have Pervasive Development Disorder and NOT autism...? Please come here if you know about PDD

[FullTimeChoreDodger]

18 months ago my son (then nearly 3) was diagnosed as being on the spectrum. I was shocked at the time. He had failed to meet the milestones at the 18 month check up and we were called back at 20 months. He still didn't meet them, so that kicked off a year-long process of assessment. Asos (?) and Disco I think . Hard to remember exactly. He was late to do everything, and was a left-handed bum-shuffler. I think they found him quite 'text book'. He always seemed to me to have social needs though, so to me anyway, a dx of autism was a puzzling shock. I was told that my perception of autism was incorrect though. They told me that he had areas of impairment in all three of sections of the triad of impairment (trying to remember the lingo is hard now!)

Anyway, roll on 18 months and although I know that this is late, he can now count to about ten and identify most of the letters. His speech is quite babyish but is inclination to communicate is strong. He doesn't just talk repetitively though. He is at an excellent school and nearly every week they tell me how well he's doing and how he's met criteria so it could be that it's a temporary effect which he might lose if he didn't have the right kind of teaching.

I have been in to his school and he doesn't stim or do any of the things the other boys do. I can sense the other mothers looking at him and looking at me and thinking what is that normal boy doing taking up a valuable place!?

he is a bit shier than average and he does like routines, loves his home, and to GET home after we've been out, he likes the clothes he has and doesn't love new clothes, but I can eventually coax him into the new stuff now. He had a hair cut for the first time two months ago. It just all seems to be 'going away'. All the worry and anxiety I had two years ago... It's all turning out to be fine.. oh yes, just be really honest here, he does tantrum quite badly at least once at day and he's four and a bit. But as he's delayed that is no shock to me anyway. I guess it's bad for an average four year old though.

was the dx wrong do you think? what is PDD? I have googled it and i think it might be what he has, but i'd like to hear about somebody's child. not just read internet blurb.

tia, if anybody can comment.

Do you mean PDD NOS? As i think PDD is simply another term for the autism spectrum.
Pdd- nos is autism but when a child doesn't present/display all the symptoms to meet criteria for another dx but the child is still on the spectrum.
That's how i understand it. Although i think it is more commonly given in the states than in europe.
Your son may have move on further up along the spectrum, many children do, they still develop at their own pace.
My son has made some progress since he turned 4, and his language is improving, he also isn't stuchk at that echolalia repetitive stage.
I guess your son is in a SN school? I'm sure if he gets to a point where his developement has progressed so much that MS with support would be good for him, the teachers will say so.
Try not to worry wether the actual dx is wrong, an autism dx has obviously helped to get provision and intervention that is working for him.
All the best, i hope he continues to make you happy with more progress soon.

meant to say stuck at that echolalia...

Yes that's what I meant PDD NOS. That makes sense about it being something diagnosed in the states, as I keep reading about it on the internet, but I don't know anybdoy whose child has received this dx. Thanks for your comments btw. he will start school (mainstream) when he is five and a half (my choice here in Ireland). he used to do that echolalia thing. he would go around the house looking at everything, toothpaste, loo roll, milk and say 'neelee aw gone, haffa buy maw'. quite repetitively. BUT again, that is something he used to do and doesn't do now.

I guess i am just hoping that they were wrong because he will only have another 18 months at the SN school and then they expect to be able to let him go. he will be entitled to four hours of 'resource' a week when he starts mainstream. Extra English and maths basically.

Thanks a lot for your reply. I look at him and I can't match up what i see to 'autism' even now. I should just put the label out of my head.

I think that trying to distinguish the two is a wild goose chase. Figuring out the difference between measles and chicken pox is worth while because (a) doctors know exactly what measles is and what chicken pox is and (b) doctors can directly examine the different viruses and see the differences between them.

but with autism, we don't really know quite what it is - we know it's real but not exactly what it is - and the differences between the different terms used change from year to year.

I know you're right. I think I am slightly worried because for the last two years I've just told everybody that he's on the spectrum, and now he's going to go to mainstream school in september 2011. he'll be a year older than the average age. SO I feel hopeful that with the resource hours he will cope. But I am thinking, hmmmm, will he be known as the autistic boy? How can I rein in that label now? Without lying or being ashamed of the label. I'm not! he is who he is and he's adorable. But I don't want the other children to be aware that there is a boy in the class who is autistic... I've told his sister that he is just as clever but that he learns in a different way. And that the whole world is geared up for people who learn the way she does, not the way her brother does.. she accepts that. But other children's mothers won't have any motivation to put it in a way that will make sure their children are accepting and welcoming of a boy in the class who is slightly different.

genieinabottle, is your son going to go to mainstream in september 2010? how do you feel about it?

yeah, I guess he's borderline now, and, whilst you'd have been thrilled to think of that at the time of DX, now you're realising it brings its own set of problems to adjust to.

I think that what happens is going to depend on whether he is able to follow the rules of engagement in the playground. If he can, and it's just that he has a different learning style, then he might be quite popular. If he reaches out to other kids without understanding the rules (like my friend's sweet son who asked a girl if they could hold hands but didn't realise he had to let go at some point....) and they mistake it for aggression or find it "strange", then you'll know he needs extra help even at the expense of "advertising" the label a bit more IYSWIM

TBH I woudln't be worrying about this: the whole diagnostic criteria is changing in a year or two anyway (new DSM criteria due out in 2012)

TBH all PDD_NOS means is autism with something that doesn't quite fit: I only know one child with the dx and she was dx'd in America, ds3 was considered for it but as I have met mroe and more children and understood the wider variability of ASD I ahve realised that he really is not that different to otehr kids on here, just to the sterotypes. I would expect a PDD child to be palced in an ASD unit as it falls under spectrum disorder.

DS3 stims but in ways you have to know him to pick out: he's gregarios, sociable, chatty if delayed in language, far from what people expect an ASD child to be.... unless they really know their stuff. He is however fairly significantly affected and in an SNU after failing in MS.

DS1 is autistic and in a mainstream primary school and even though the other kids know he is is different, they think nothing of it. He's not the only obviously "different" child. There's a girl in his class with major food allergies so can't share food with the class. Another who needs very strong glasses. There's a few kids in the school with scars or birthmarks on their faces, a couple who are much shorter than their peers, DS2 who is also autistic and another child on the spectrum, plus another child with quite severe ADHD who exhibits a lot of challenging behaviour. Add in kids with weight issues, kids of assorted races and quite a few with language delays and for such a tiny mainstream school, it's really quite diverse.

Neither of my boys have turned up at school with a big t-shirt on with a label on it, but the other kids have been allowed to get to know them as they are. Some of the kids ask why DS2, still in nursery babbles, or rides in a big pushchair and we explain it very simply. He hasn't learnt to talk yet. He gets very tired if he has to walk too far. If a child gets in his face and he starts whimpering, we explain that he finds it hard to cope with people crowding him, but he'll be very happy if you play next to him. He actually has quite the little gaggle of female friends, now!

DS1 is prone to some quite dramatic outbursts and tantrums and the other kids in his class mostly just quietly skirt around him and let him get on with it. They know he finds it hard to sit still and sometimes very hard to join in and can be so positive and encouraging when he stays with them through carpet time. Many of the kids are in awe of him because he is so clever. Yes, we have had a parent complain about him, but that parent's child is such a snot to DS1 and others that they were given pretty short shrift.

Hi,
I'm in Ireland too so hope my comments may be of use.
PDD-NOS is often used here for atypical autism/ASD. Be very careful of having this written down in any reports.Make sure you ALWAYS have ASD down. Sometimes the HSE or the Dept of Education will not provide services to the same level as for ASD. In particular July provision has had problems in this regard.

With regards to school starting I would not worry about the 5.5 years.You may find many older children in the class.

You should be getting 5 hours a week resource not 4. It is not just english or Maths. You should have an IEP and a focus on what areas need to be worked on for your DC. It may be work on fine motor skills or friendship groups, etc. Resource hours must tailored to the child and to be honest the sucess of mainstream depends on the school and how proactive and inclusive they are.

Have you had an SNA confirmed? If your son is improving brace yourself for having your SNA hours reduced

Regarding how other children view your child it is amazing how open they can be - it is their parents who can be the problem. If your child has an SNA people will know he has a special need but there is a huge range in classrooms today and there is no need to tell people if you do not want to.

If you check on rollercoaster.ie - special need section there is a very good thred on starting school. You may find it helpful. The very best of luck!

My ds is in mainstream with full time support and so far nothing negative from children or their parents. Must admit though that I now see ds as just a different kind of normal and don't make any apologies for him. If any of the parents are bothered it has sailed over my head .

I guess its hard, as the spectrum is so wide. If you were to see my DD1 in mainstream school, she'd be hard to spot somedays. She has HFA, was a late physical developer and bum shaffled everywhere but walked in the end at 2 years old. She speech has always been amazing and she is very bright in math and english. However at 7 she still asks me why she has to wait in conversations, why does it matter if we are late to a friends for dinner and why cant a little lad get changed on his own in the mens changing room at swimming rather than being in girls.
I would say that she has weeks where we do better then something will throw her off. We have tantrums daily still at 7 years old, and some days social skills are hard manage but with ones she knows well she finds it easier.
Hope this helps.

I wouldn't worry about the difference neither.

My ds has been informally dx with autism by the paed. His issues on paper fit with autism, but if he doesn't meet the criteria with the diagnostic test (if we ever get it!) he will be formally diagnosed with pdd-nos.

The plan of action was to be the same regardless of what final dx he ends up with. I don't think the formal dx really seems to make much difference at all. ds1's list gets longer every year, but the help stays about the same!

Sorry have only just seen your question.
Yes DS is set to enter reception in a MS school. He will be on early years action+ (unless we manage to put get a statement in place before which is unlikely).

I have mixed feelings about it. ATM DS does struggles a bit in MS nursery, however he is doing very well in the small language unit he attends part-time. I hope he will get the understanding and support he deserves.

I can see why you worry about how the other children and mums will look at your DS.
It would break my heart if DS was cast aside because of his differences, he is a lovely happy boy and with appropriate help he can do well. I hope others can see this and give him a chance.

Good luck

Isn't PDD just autism but with only one or two of the three impairments?

ds has a dx of PD-NOS but paed put (HFA afterwards), he did an American assessment. Not really bothered by which dx he has but I know his on the spectrum and needs understanding (as well as a bit of support well at the moment). Sometimes I think with HFA it is always there, but as they get older you cannot tell how it will go as some develop techniques to cope. He made a lot of progress from 3 (talking for one).

When out and about its hard to tell most times (easier at home) and my friends did not think there was anything their, so I guess just take my word for it, but I see his stims are revealing themselves more as he gets older and it seems more constant, so they are now asking.

but his had got support at the nursery that have helped him developmentally. He has understanding, likes all his peers toys (still lines them up), slightly odd language and is a bit behind, his getting more vocal, a few outbursts! a range of sensitivities but not to bad.

I thought you could get full support in Ireland. Ds starts school in sept and I am nervous, but not as nervous as a year ago. He will be on action plus, but it all depend son the school. going from a fab nursery its will be tough. but we have transition meeting and will meet the teacher, visit the school and hope they 'get him'.