PDD-NOS - Asperger's

[mlr]

I asked a question about PDD-NOS over in Education, but thought I might be able to get more insight into it by asking here, more about ASD than education.

My son's school thinks he has PDD-NOS. They have another child in the school who has Asperger's and say that my son 'is nothing like that', which seems rather irrelevant to me, as two ASD children could be very differnt from each other.

My son certainly has difficulties in school, and although I can see hints of autism in what they are saying, a lot of it could just be shyness and boredom. Both my parents (special needs teachers), my partner's aunt (teacher in an asperger's unit), my son's childminder (an Early Years Playgroup leader) cannot see anything unusual in my son's behaviour.

Given that none of these people see my son in school, where the presence of large numbers of children may make autistic symptoms appear more, their opinions may be wrong.

So what do I do? What do I say to the Educational Psychologist who is coming next academic year to do an assessment?

Has the school called in the Ed.Psych because they think your ds might need extra help in school? Sorry, I'm just trying to understand why they have taken this step if you think he's fine. I'm so used to hearing how parents have had to fight for a referral because they themselves think/know there is a problem!

Have the school said specifically why they think he has PDD-NOS? Have they mentioned which 'traits' they think he has?

I'll explain their concerns. I just didn't initially because it would have made my first post so long!

They say that although my son is not more agressive than other children, when he hurts someone he cannot explain why he has done it.

He cannot write a story, either from his own imagination or by retelling a well known tale.

He cannot follow informal instructions.

He often drifts off and stops paying attention on the carpet. 'He only concentrates if he is interested.'

He is six, in a class of 22. This covers year one and year two. He is the only summer term born child and some of the children are nearly two years older than him.

He is hugely improved this year from previous years, as he could not cope at all with the informality of learning through play in nursery and reception.

He has just been moved to the table where the low ability children sit (sorry if that is offensive- please suggest a more appropriate term), so that he can have instructions explained to him by the NTA. He is above the educational targets for his age and so is set different work from the others on the table. The teacher thinks it is not helping for him to be placed there as his needs are different, and believes that he temporarily needs one to one support.

He can't write a story: I didn't think 6 year-olds were supposed to be able to write stories yet, though of course I could be wrong! If he's a summer baby then it's quite likely that he could be a little behind the others in some aspects. I'm just wondering if they're concerned that he might be lacking in imagination or whether they think it could be a sequencing problem. My ds1 is 4yrs old, has a dx of HFA/AS and has just recently reached the stage of being able to tell a story if he can see the pictures. If he can't remember the original story he sometimes adds his own version. He probably couldn't make up a whole new story of his own though. I'm not sure how well he would do with sequencing though, eg mixing up the order of the pictures and telling him to put them in the right order.

He can't follow informal instructions: I suppose it could depend on how well those instructions are worded. Again, at 6yrs old I'm not sure what they expect.

He only concentrates if he's interested: Again I think that could apply to a lot of 6yr-olds.
My ds1 tends to flit from one activity to another but if it's something he's really interested in he will stay at it for hours.

I've been having meetings with my ds1's future school (he starts in September at a mainstream school) and the teacher and Head have both said that many children thrive on the routine and structure that school provides. Not all children are suited to free play and prefer a more structured day.

It sounds as though the school wants extra funding for 1-1 support. From what you've written it doesn't seem all that likely that they would get it. It must be tough being in a class with 2 different year groups. I could be wrong but pretty much all of these problems could be attributed to his age. What is he like at home?

Where's MrsForgetful when you need her??

It is difficult to assess what he like at home, because so much of it comes down to personal attitudes to what is okay behaviour.

He is not the world's best behaved child, but then I am not the world's best mother when it comes to managing behaviour.

In terms of ASD, he only cuddles with his back to me, and doesn't make eye contact during a cuddle, although he does at other times.

He tends to notice patterns and numbers in things, such as, in a cafe, 'there are six groups of six lights, which is thirty six lights. 35 work. one doesn't.'

He defines actions by the extent to which they make logical sense. 'The nativity play makes no sense. Why didn't they just set off on the donkey earlier?' 'Why does the dial on the car go to 120 miles when you're not allowed to drive that fast?'

He is prone to immature tantrums when other people's behaviour does not fit into logical rules.

He is not very good at entertaining himself, compared to his sister who is three years younger.

He draws a lot of maps and maths diagrams.

Not any help, but I have to say he sounds incredibly bright. The questions about the nativity play and the speedometer are terribly impressive- the sort that make you think "yes, why is that??" Good on him.

ALthough it is nice to hear you say that, the school will never say it! They say he is a deep thinker, when he wants to be, but most of the time he doesn't tell them anything.

It seems to be the wrong sort of intelligence, because there are no tick boxes in the National Curriculum for that sort of thinking.

It is of no use being intelligent if you are lacking in the social skills to talk to the teacher. A lot of what goes on in schools is about style over substance.

I shouldn't rant though. It won't help my son.

Just to respond to what Coopertop was saying about the school not getting one to one support, there does seem a higher likelihood of them getting it because of the LEA's attitude to Asperger's. The other local school has a class just for children with Asperger's, the Asperger's child in my son's school has one to one support, and I know other local parents who have had to fight and pay independent autism experts to prove that their children didn't have autism, which all seems entirely contrary to the experience of the rest of the country.

Even though it can be upsetting, I think it's right for a school to raise concerns if it has them - certainly my ds's has done that. And even to suggest an ed psych (ditto with ds), so long as the referral is for the right reasons - ie, help with learning strategies.

But a school's job is not to offer a diagnosis - that's a proper professional's job and only after the right kind of assessment. I don't believe the training of an ed psych necessarily gives them the right expertise, so I'm not sure that referral to the ed psych will either address the school's presumptions, or answer your own questions (if you have any).

In case you do, and since the term has been raised, there's a PDD-NOS checklist on childbrain.com which you might want to have a look at. My ds (who's 5) scores under the threshold - used to be "just" under, now increasingly lower - and that, together with the ed psych who (after a very happy interview with ds) basically said "very bright children just are atypical developmentally", and the developmental paed who also didn't see problems, has helped me see that although ds definitely has some issues they really aren't in the ASD scheme of things. (What they are, is of course another story!)

I replied on the other thread- but just to say again I would be wary about a dx such as PDD-NOS- it's an excuse for not giving any help. Your child needs proper assessment from a paediatrician if a diagnosis is needed (and it may not be). Like Binkie I said on the other thread that an Ed Psych isn't the right person to be diagnosising. If it is needed then its better to get a "proper" diagnosis from a proper professional so you have better chance of accessing the help that may be needed.

I'm very thankful that I have posted here, as people have been so non judgemental in their responses, and have not pushed me into saying that he either does or doesn't have PDD-NOS.

I've done the PDD-NOS checklist and he scored 31, which isn't high enough to suggest he does. I've also done the Sally-Anne test and he could do that. I am going to get in contact with my health visitor and get a referral to a paediatrician.

We have been through the process the other way around, where we thought when my son was three that his co-ordination wasn't developing, and yet the nursery thought it was. He was diagnosed as having a developmental co-ordination disorder and when he started school the teacher did a special programme with him in PE, which greatly improved his abilities. I am quite confident in my paediatrician's helpfulness.

I just want a professional to give a fair unbiased assessment, and if they don't know why he is the way he is, or if there is no box for the way he is, I would just like them to say so!

ahhh have you thought of dyspraxia? Lots of dyspraxic features overlap with the autistic spectrum- problems with sequencing are a classic dyspraxic thing. Can I recommened Madelaine Portwood's book "developmental dyspraxia" it's the best one out there.....

I may be way off course- as you haven't mentioned any manipulation type problems but it may be worth looking into.

Also may be worth looking into sensory integration problems- as these lie at the root of autism and dyspraxia and even dyslexia. But it is possible for a child just to have sensory integration dysfunction without meeting the criteria for a diagnosis of anything else.

mlr I couldnt say whether your son does or doesnt have this, however, most if not all of the traits that you have suggested your son has are similar to my nephews behaviour, and he does have suspected aspergers, however, not bad enough they feel to statement him for it.

My nephew is well above average and has recently been put on a maths programme for this very reason, he came top of his year in his tests.

Like I say I wouldnt like to suggest that your son has this but just wanted you to know my experience of a child with similar behaviour patterns.

Hi mlr i've just read through what you have wrote my brother has asperger syndrome,It took the proffessionals a long time before they would diagnose this.I think that he was 8 years old he is now 17,if i can answer any questions for you about this i would be happy to.

We did think of dyspraxia when he was younger. It was however dismissed by the paediatrician as the problem was with gross motor skills but not fine ones. The gross motor skills have improved due to the exercises and also due to removing social aspects from sports. Swimming, running, and riding rather than football etc, so that he only has to focus on his own actions and not have to try and predict what other people are intending to do or how close he can get without bumping into them. I am now starting to read up on dyspraxia again though.

We have btw started on eye Q, as it seems to help some people with a range of differences. The thing keeping me sane in all of this is that in some ways I prefer the different children to the ordinary ones.

What are sensory integration problems? What has your experience of them been?

Can I ask the people who are willing to share their experiences, have your ASD relations/children improved with age, and if so, did it happen naturally or did particular interventions help?

MrsForgetful is the ideal person to ask about AS at this age. Hopefully she'll notice this thread and post a reply.

I agree with the poster further down the thread who said that it's not the school's place to make an actual dx. I also agree that a full multi-disciplinary assessment would be far more useful than just the opinion of one Ed.Psych. It sounds as though he may have some traits but it doesn't necessarily follow that he has AS IYSWIM.

Well my son is pretty severely autistic- he's only 5 though. He's very sensitve to diet- and is gluten free and various other things free. Oils make a big difference to him- but Eye-Q is not good for him- too much omega 6. He's currently on plain (but flitered expensive grr) cod liver oil. We've tried AIT- didn't do much- but may be worht trying again. We've also just started ABA (a teaching programme) and he has a sensory programme.

My son is hypersensitive to touch, getting worse with sound, and has something weird visually going on (although we think the vitamin A in the cod liver oil is helping). His sensory programme aims to train his senses into behaving normally. A lot of people believe that autism is caused when a young child cannot make sense of the world because their senses are all over the place. They see people's lips move, but can't hear them until later, the world appears bleached or in shadow, some adult high functioning autistics talk of being able to hear toilets flushing 5 flats away etc etc. Sensory problems vary from individual to individual but are pretty universal in autism.

My nephews (he's 12) behaviour has improved in some ways (not so many tantrums now and certainly now to the degree that he had them when he was younger) but other aspects have become more apparent. For many years we put his behavioural problems down to Cerebral Palsy as we didnt know any different, and it was only a year ago that it was suggested that it was something other than that causing him to behave the way he does.

He finds it particularly hard to form a relationship with other children, although since starting school has made great friends with another child that also has aspergers.

Unfortunately my sister hasnt really been offered a lot of help, nothing has been suggested and no help offered as to what she can do to help him. He has been assessed (I think by SENCO although not positive of name sorry) and they dont deem that he needs statementing.

To be honest I think the assessments they carry out at school are pretty poor as they see the children for such a small period of time that I dont know how they can make a fair assessment of their behaviour! HTH.

Ds1 has made huge amounts of progress over the past 18 months or so. At 2.5yrs he was non-verbal, couldn't bear to be around people, and didn't even use his hands if he could possibly avoid it (sensory problem). As a baby we thought it was cute that he used his feet as hands - now of course we know the real reason why! He is now 4yrs old and will usually tolerate playing alongside other children. He still has SALT but he chatters away quite happily. He's starting to use his hands more too which has made a big difference to his independence.

A lot of his progress has been natural IMO. He suffered a lot with sensory integration problems and he finally seems to be able to 'filter out' the worst of the effects of this. SALT has been good for him too. Although he can physically speak he didn't pick up things like verbs, nouns, prepositions etc naturally. Social Stories and visual timetables have been the best intervention over the last couple of months. These have proved to be the best way of teaching ds1 how things should/will happen.

Understanding why ds1 does certain things has been the biggest breakthrough for us. We had absolutely no idea about many of his sensory problems until they were pointed out to us.

How long does it take the oil to work? I've read it takes 12 weeks but did you see improvements earlier?

Did you remove hydrogenated vegetable oil from his diet? I have a pharamcist friend who is so convinced of the dangers of it in terms of brain function that he never lets his children eat it, despite them having no special needs. I haven't even started looking into diet yet.

I saw improvements earlier. The reason some people avoid hydrogenated fats is becasue its high in omega 6's (which can be the problem with Eye Q- especially for children on the autistic spectrum who are usually deperately low on omega 3's).

The improvements were more noticeable when his oils were stopped for 6 weeks. He then needed 2 people at school to get him to concentrate for 20 seconds. He spent the whole time flitting. Couldn't really access the classroom at all. As soon as we put him back on- well about 7 days later - it was like a switch went on and he was a different child.

My son Thomas was diagnosed with ADHD at age 7 and then Aspergers at 9 (though if school had been allowed to diagnose they woukld have done so at age 5!)

I feel strongly that an Ed psychologist should not be the one relied on for a diagnosis....i see them as being invaluable AFTER diagnosis as they can look at the 'big picture' of how the child manages from the moment they walk through the doors until they are back in your care.

Also, have just moved schools (april) due to the poor support/attitude towards SN generally at the previous school.

Basically leigh (age 7) has been demonstrating obvious ASD traits for nearly 2 years and all i got from the school was'Well he's nothing like Thomas'....so they refused to take me seriously. So i self-referred to the paed who diagnosed tom- and whilst she agreed that he was showing aspergers tendancies....that the school seemed to feel he was managing very well. So that was that.

However after just 2 days in the new school he was put on school action plus and the paed was contacted.

So i totally agree with the fact that you cannot 'rule out' aspergers 'just because the others with it are not at all like it'...however i do agree an assessment is a good idea as much of what you have described sound very familiar to me.

i'd love to say otherwise but because i have 2 extremely different boys - both somewhere on the spectrum ...

As far as 'what you say to the ed psychologist'
what i would do is list the kind of things you have on here that you notice and any strategies you have to use to ease his difficulties etc....with my 7 year old i have to invest alot of time with him to explain figures of speech (he is literal),explain how and when to apologise, how to wait for his turn in conversation, gradualy introduce 'end of activity' or change to a plan/routine,explain body language, he uses fingers to eat and i have to feed him spoon foods,i could list many other things....but will leave it there!

whereas tom well he is the walking encyclopaedia who's only irritation which fits the 'routines/need for sameness etc) is how t.v programmes change their graphics/music/channels etc and he gets annoyed with tv adverts which 'makekids think that their toy will do THAT.....'but in reality the toys are rubbish and are a real letdown.....hope that makes sense.he asks questions but has no interest in a reply....he cannot write stories from imagination...he bases all stories on playstation games he plays. lately he has become very angry and uses offensive language towards me- he also refers in an inappropriate sexual way to me too which is very hard to take as he 'luckily' doesn't do this at school so I get no help with this- if it happened at school then i'd get help. he also has no organisation skills ands though incredible long term memory- he has to have step by step guidance on everday things as he has terrible sequencing skills....though on paper he scores fantasticly if asked to sequence a picture story ...however struggles to get dressed

For me ....looking back this is how i've got here....

Always 'knew' he was 'unique/different'
I learnt about ADHD and decided that as Tom was nothing like another boy i knew with Aspergers that HE DID NOT HAVE ASPERGERS (!!!see i made that assumption too)
Also to be honest....had a fixed idea about autism so again this 'coloured' my view.
Medication for ADHD relieved the symptoms sufficiently to convince even the paed that maybe he didn't have aspergers.
Then he had a speech and language assesment....and the 'well hidden' diffulculties he had with language emerged.
i then 'just for fun' read up on aspergers and realised how similar it was to some of the ADHD stuff i'd read (and dyslexia...and dyspraxia....and semantic pragmatic disorder) .
so i read up on all these things and kept being drawn back to the aspergers ....as he has what they call the TRIAD of impairments....ie social,comminicative and imaginative impairments...AND finally i accepted that whilst i felt he was dyspraxic and ADHD....neither of those accomodated this triad totally.

Best way to explain is you can have a dyslexic child who is socially impaired but can play imaginatively...or a dyspraxic child who is socially skilled.....but an Asperger's child will be impaired in all 3 areas.....maybe only mildly and some of the impairment may be worse than the other.....

so....back to what you do now....READ READ READ - all you can. you will then hopefully end up reaching a point where you can 'pigeon hole' his difficulties....and don't forget the 'qualities' too...it's not all bad!!!

As well as 'hidden dissabilities' they come equipt with 'hidden talents' too!

ask me ANYTHING specifically....i do tend to ramble....so if you need more info....i'm better if you direct me!!!!