Is the Ed Psych trying to say DS has ASD?

[YakkaSkink]

DS is 6 and has had all sorts of issues from sensory problems to social difficulties and ASD has been suggested since he was 2, but I still can't see it. Whilst he is inflexible when it comes to dealing with other young children I always feel that it's a reponse to his social uncertainly, trying to take control. But if someone suggests something he might like to try, he's always willing to give it a go, he doesn't care much for routines and tends to prefer variety and novelty.

He seems to be very dyslexic as he wants me to read books to him aimed at children who are aged about 8-10, comes out with an IQ at about 140 when tested, he can barely write his own name and struggles to read the books his peers are way beyond already (though he manages better with a coloured overlay). DS definitely doesn't 'get' the social rules and is weak at paying attention when he's supposed to but can focus when he's interested.

DS's statement was in draft form before I saw the ed psych's report at all - he wrote such a pile of junk at all levels (no analysis, he'd only seen him once two years before), that I complained to the head of service and they agreed to send someone competent (actually very good) to re-do the assessment. The original report identified DS as having Behavioural, Emotional and Social difficulties as his primary area of need which fits with what the school SENCO feels (that DS is a naughty boy because of my poor parenting). This report says that DS's primary area of need is Communication and Interaction which I didn't really understand as a category, but I've looked it up and it basically seems to suggest that she thinks he has an ASD - am I right in reading it this way?

The SENCO is trying to argue for secondary categories of BESD and Cognition and Learning by inserting this stuff into meeting minutes and trying to push it into the statement, though that's not what the ed psych has said. At face value, the only reason I can see for not doing it is that it muddies the waters (especially as DS has mild physical and sensory impairments as well) to the point of allowing anyone to argue anything about him. However, the SENCO and I do not get on and she has a long track-record of making things up to fit her prejudices, so I'm suspicious of her motives for trying to do this, but I can't see what she's up to this time. Is having these additional categories something that would make it easier for the school to argue that this one (a mainstream primary) isn't an appropriate setting for DS? Or is it that she wants to see the bad behaviour as inherent to DS rather than a symptom of their failure to meet his needs? I'd be really grateful for some help to work out her agenda as it's bound to be dodgy but I can't spot what she's up to this time. It's a small LEA with a very limited range of alternative provisions if mainstream doesn't fit.

Who has assessed him? I mean, which professionals has he seen? You can't just go on what an Ed Psych and SENCo say. Has he seen an Occupational Therapist, Speech and Language Therapist , Paediatrician? Has he been assessed for dyslexia? Would you be willing to have him undergo a full assessment for autism, if only to rule it out?

In my experience, sadly, you do need to go in all guns blazing with the professionals, and be dogged and determind until you get your DS seen by the people he need to see, and get the answers you need.

A Statement isn't worth the paper it is written on if it doesn't accurately describe your DS's needs and specify and quantify the support that should be put in place for him.

I am no expert, but I have a child with Asperger's Syndrome and have been through the whole sorry Statementing and diagnosis process. I am happy to help in any way I can.

Thank you - he's seen a SALT, OT and Physio - SALT was impressed by his language abilities and felt that focus was the basic issue and commented that he's not literal - he's great with metaphor. I tend to feel he's more ADHD or just delayed than ASD but I keep wondering if I'm just too close to him, don't have enough experience of other young children and I can't see it.

OT & Physio have identified some physical problems but no referrals for podiatry/ incontinence or any of the other things they promised and no money for things like weighted blankets. Though they did explain his constant movement and pen grasp problems by dx'ing hypermobility which was useful.

Paed has put him on the waiting lists for neurodevelopmental assessment (about a year of waiting to go) reports back from local parents are that unless your child has all the signs of classic autism they won't dx anything anyway.

At the insistence of SENCO (they are buddies) and to my annoyance, paed has referred to CAMHS, but no indication as to wait time. LEA/ school won't assess for dyslexia as he's too young but they're treating as dyslexia as the school agrees with me on this. I looked into private assessment but because of price tag (£500) and the fact that they said it may be inconclusive because of confounding factors I'm leaving it for the moment.

Hi Hothead, he generally takes a fairly firm hand with instructions: you have to get his attention as he doesn't hear you unless you've sat there going 'Earth to DS...Earth to DS...' and touched him on the shoulder until he notices. If you then ask him nicely and like you mean it he'll usually do it without a fuss - it varies from eager to help if it's something like putting shopping away to grumbling and diversionary tactics if it's reading. He does push his luck sometimes (most often continuing with something he's been told to stop) but will go to time out if told to do so and stay until allowed to come out. He will not register group instructions from a teacher or anything bellowed from a distance or without getting his attention.

We had to cancel a special trip last weekend with friends at the last minute because my car woudn't start (that was a pretty big loss) and he looked a bit grumpy about it, but actually got over it faster than I did. If someone breaks one of his construction models he will go into a full biting-and-kicking tantrum though.

He shares a lot of traits with my DS, who has a diagnosis of Asperger's Syndrome. He just about made it into the criteria for AS - the 'triad of impairments' - but he isnt the classic AS child that you see n paper - but then, not many children are. As is a real spectrum within the spectrum, iyswim. He has a brilliant imagination and loves metaphor, plays on words, humour etc. He isnt literal at all, and he doesn't have obssessions about things, really. But he lacks social imagination, and finds social interaction difficult.

HotheadPaisan, as you mention it (see my other thread!), I am looking into PDA. My DS has extreme demand avoidance, and this is actually much more of a difficulty for him than his more classically AS traits. It doesn't sound like the OP's son has such difficulties though?

Two thigs OP:

First and foremost you do not necessarily have to wait a year for assessment. I was on a 18 mth waiting list for ADOS. I phoned and phoned and emailed and wrote letters, urging them to bump him up as his difficulties at school were so extreme. In the end, they offered me it within a month (but in the meantime the lead a Paediatrician with specialism in ASD in my area assessed him and diagnosed him on the same day. He had already seen OT, SALT, CAMHS, advisory teachers and Ed psych, so she didnt see the need for him to go through the testing. In retrospect, the assessment would have been good and we may yet go back for it, but we knew what his problems were by that stage and needed a Statement , so I was just glad to get the diagnosis).

My point is, I have learned over the years to never, ever take anything a professional tells you about waiting lists or things 'not being worth it' seriously. Make a nuisance of yourself, show them you mean business, and you will usually get what you want and quickly. This worked with the OT (3 mth waiting list, saw me within a week), SALT (ditto), Clinical Psych (6 mth waiting list, within a month we had weekly appointments set up).

Second, don't necessarily be afraid of CAMHS. In my area they are benign but useless, but by agreeing to a few months of harmless play-based psychotherapy, we were able to show and prove that it was useless and not what DS needs. We were then able to get a referral to a much more eminent Psychologist out of borough, paid for by the L.A, because we proved by elimination this was what he needed.

I know it is daunting! Wish you luck.

Hothead: I have looked at the descriptions for PDA as my a friend thinks her DD has it and it fits her so well (the trip was due to be with her and she melted down properly) but it doesn't seem to fit for DS, though with any of these things I wonder if it's just that I'm too close to see it.

LLW: I'm somewhat afraid of CAMHS because I've had a lot of finger-pointing at me being a bad parent. I know I'm not, but my dealings with the SENCO, paed and parenting support services have turned out bad so far, on the other hand it's also a case of clearing my name and getting them to look at the right areas so we do need to do it but if it's anything like what they've put me through so far I'm absolutely dreading it. I was pestering the paed about looking into a diagnosis for DS's physical/ sensory issues (looks to me like EDS type II and other family members have a dx) but it all seems to be backfiring as she's casting me as neurotic (he doesn't have enough hypermobility and she thinks that's all it is), but not in a way I can deal with openly because she does it by tutting and rolling her eyes in meetings (SENCO's favourite tactic as well). I don't dare push anything as it just makes things worse.

In my LA, communication and interaction is the SEN type that is used for ASD. They use C & I instead of ASD so that DC who don't have a DX can still access the same advisory teachers. It's actually something that my LA do well. The C & I team is really good, very supportive, feel like they are on your child's side. They may not be the most up to date in their thinking re ABA, etc, but they are still worth having.

So... I do think that your EP is thinking ASD of some sort. Remember it's a wide spectrum. An EP can't DX, however. If your DS's needs are neurological in origin, avoid EBD or BESD placements like the plague.

Yakkasink, I feel for you. I was cast as 'aggressive' and 'hostile' by the Head at my DS's former school.

If I were you, I would get some independent support. Forget Parent Partnership and Famuy Support etc - they are paid by the local authority and arent impartial. have you spoken to IPSEA? they are brilliant, although hard to get through to them on the phone, so takes persistence.

My top tip: Write every single thing down - notes of every meeting, disagreements you have had, your own opinions on things - and file away. they may come in useful one day. When I submitted my 'evidence' for Statutory Assessment, I typed up my own notes on each report from professional, expanding or qualifying things they had said, and noting where I disagreed with them and backing it up with my own evidence from research. Extreme, but it worked.

Have you thought about a different school? I know that seems drastic, but the SENCo sounds horrendous!

Thanks EllenJane, that does make sense and it's what I'm thinking - I do respect this ed psych's opinion so I'm going to think about it and see if I can understand what she's driving at, or more how ASD might fit with the DS I know as I don't want to be the thing standing between him and the help he needs, though I still don't really get it at the moment.

LLW: DS was well on the road to exclusion from his last school (at nursery, he was getting excluded for running off and biting) so the fact that this school has got him learning, albeit slowly and mostly calm shows that the school and the SENCO are better than most - they have gone out of their way to make things work for him but with no understanding of why he's having problems, they rely on the intuition of experienced TAs. There's nowhere around here that's likely to do any better so we do need to stick with it.

SENCO says that school is a microcosm of society as a whole and her aim is to get DS to fit in to it as that'll be his best chance in adult life (with the subtext being that he's suffering damage from his abysmal home life, so getting him to be 'normal' is a realistic aim). My take is that school is not much like the civilisation of adult life so I want the broader aim of making DS able to handle adult life effectively, developing self-awareness and accepting that he's different as I see his differences as being inherent.

Hi,
You might find these links interesting: www.cpdbytes.org.uk/resources/Paper5.pdf

books.google.co.uk/books/about/Misdiagnosis_And_Dual_Diagnoses_Of_Gifte.html?id=NQrtt-peg5AC&redir_esc=y

I would also recommend doing a search on gifted dyslexic and twice exceptional.

Hope this is of interest.

You ask what your SENco's agenda might be. Is there an EBD primary provision in your county? If so she may be pushing for 'behavioual difficulties as primary need' on the statement to get your DS placed there.

At my school we have very few children left with emotional and behavioural difficulties. The majority of our children have neurodevelopmental issues that cause challenging behaviour.

We are becoming seriously expert at meeting the needs of children we recieve now. Not every 'EBD' school is the same though. You should look closely at what alternative provision is available- it might be that you should avoid it like the plague or it might be much more suitable.

Ds is similar except for the biting and running. He has a twice exceptional dx but he is ADHD with aspergers traits (sensory and social) anxieties and phobias. He also has issues with continence.

To be absolutely honest, they are in the ballpark when they describe the behaviours, but you are not going to get any answers at all until someone somewhere does some formal assessments.

What assessments have they actually done so far?

WISC testing? You mentioned iq tests - did they do full wechsler testing? Wiat?
Has he had SNAP IV done? Conners? Basc? Anything from DSM IV?

If you have copies of what has been done already, and you can't wait another year for assessment (it is usually a really long wait for this stuff) then some parents opt to get private testing done for dx.

I've got the dual and misdiagnosis book above. It's an interesting read, but probably not definitive in the sense you are hoping for - and much more difficult to be definitive without a full battery of testing. Gifted kids can be nt, or they can be on the spectrum/ ADHD, and of course kids can have sn without being gifted. If you have reliable testing done to give the iq figures, then he does fit into the gifted category. If you still have the wechsler test reports, you can see really easily if he is equally high across the board, or if he has what is commonly called a 'spiky' profile. For example, ds1 is extremely high in two areas, and absolutely 50th centile bog standard in two areas, which brings his overall iq down (still in the gifted range for full scale). Kids who have big discrepancies in these things can sometimes exhibit some interesting quirks. (ds's profile fits his ADHD dx. I'm still not entirely convinced lol)

So, I dunno. It might be worth getting a private clinical psych to go through the results you have and fill in the gaps (it is often not possible to re-do testing within a certain period of time as it can give false results), if you don't want to wait.

My son has a similar profile (and very spiky as Mad Woman mentions) and I felt that the teachers, SENCO and Ed Psychos that I encountered really did not have any knowledge or experience of such a child. An IQ of 140 would be about 1 child in 260 or 99.3rd percentile. When you add dyslexia and the other issues, then you could be well outside their area of expertise. Most junior school teachers do not even have training in dyslexia. If you can afford, I would recommend paying to see someone who really knows what they are talking about. They said similar things about my son and said that they thought he had Aspergers but he didn't (traits and eccentricities for sure though). I think that part of the behaviour problems came from the fact that he was very bright and creative but struggling to master the basics and so was stuck on the bottom table where he was bored out of his mind.

Hi Niceweather and madwoman - thank you, I have the Misdiagnosis & Dual diagnosis book and agree that it's well worth reading and my feeling from reading it is that he's clever and eccentric with very weak social skills and developmental delays but nothing leapt out so far.

In terms of testing, he did a Bracken test and hit the test ceiling at 4y11mo (the ceiling is 7y11mo). He's just done a Das Naglieri CAS which has centile ranks and got 42nd for planning and attention, 97th for simultaneous processing and 99.6th for successive processing. I shortened it for brevity by guessing an IQ (which would be about the same as mine and his dad's) of 140 - the ed psych doesn't belive in formal IQ testing and I don't care about the numbers so long as they get that he's bright but he has some problems. We've done BASC and Conners but nobody's told me the results - though they referred for neurodevelopmental assessment after that. Paed won't give me a reason why they won't consider ADHD - just asks personal questions (Am I sleeping with the lodger? and eye rolling, lots of eye rolling). Maybe I should insist on being given the test results so far... but finding the money for private testing is v difficult indeed. I want to make sure his existing school keeps him as he wouldn't cope with the rejection of being chucked out.

Thanks EBDTeacher, There is a school that takes children with BESD nearby, it's trying to pull itself out of special measures and I don't know much about it, though I'd be surprised if they would know much about how to stretch him. There's another one for children with MLD, Physical disabilities and ASD that's better but I was talking to a young woman recently who is very bright and has physical disabilities who left there last year and she wouldn't wish it on anyone else who's academic she was so bored. So I wouldn't have high hopes of either being a good placement for DS, I wonder whether no dx is actually his best option?

"I wonder whether no dx is actually his best option?"

No because you'll be floundering around even more. Also having no dx keeps doors closed.

It does depend on the quality of the EBD school. We have a full range of ability and lots of very bright children at my school.

In a great EBD school very little of the time will be taken up managing behaviour reactively because it is very carefully managed proactively. So, in the right EBD school your DS could well be in a class of 8 where there is actually less inappropriate behaviour occuring than in a mainstream class. He would have a much better chance of being stretched, and having his 'spikes' ameliorated, in that kind of environment.

If your local place is in special measures maybe it is not the right placement though!

It's great that you feel the school is the right setting for your DS - and you know best. It is definitely a good sign that they aren't excluding him in the same way that the nursery was - exclusion is a sure sign that the school don't have the expertise or ability to manage your a child. But just to play devil's advocate - a SENCo who doesnt work well with parents, and who doesn't have complete empathy with your worries, isn't a good SENCo. Trust me, I have met a fair few in my time, and a good SENCo would never undermine you, override you or not back you up the hilt...

I have to agree with Atilla. A diagnosis means there is at leasta hope of your DS's school - and secondary school, in future - having a proper understanding of your DSs needs, properly trained staff and adequate support put in place. Without a diagnosis - and Statement - you don't have as much power, as a parent, to demand the right support for your boy. There is no doubt about that.

Dd2 has cerebral palsy and is gifted - she had a one day placement to a special school for an early years programme, but no one in education has ever considered her anything but a ms child, despite mobility and communication being a problem.

Your paed sounds bizarre. Any chance of changing to a different one? You could also ask for full copy of his file - some places charge £10 for the privilege, but you do really need the test results to go much further on your own, I think. And they should be sharing them with you - v odd that they aren't. Do school have a copy? Has he had the neuro developmental assessment then, or are you waiting to see someone else at the moment?

There is info on twice exceptional on the nagc site, and also hoagies, but you have probably found them. I have also just found seng, which looks to have interesting stuff too, but haven't explored it much. Other than to wish I could afford to go to Milwaukee for their conference!

I think changing paed might be an option as there is a good one I could request instead and that could be done via the GP but I'd prefer to go though the CAMHS stuff first to clear my name. I'll request his file and then see if it offers any pointers, yes, he's just sat on the waiting list for the neurodevelopmental assessment but they are really reluctant to dx and I know that DS is anything but clear cut.

Thanks, that does make sense that he does need a dx it's just that I don't have a sense of whether it's ASD or BESD or just clever, dyslexic and asynchronous. They tried to treat as ASD - putting in more routine etc. and he went crazy with boredom and he's not at all literal, then he does something very ASD - only playing a very limited number of social games he's been shown or blanking friends in the street. But perhaps the paed's notes will help clarify - I can only push if I know what direction to push in.

I know the SENCO's bad but overall DS's experience is good, the TAs are good, his class teacher is good, the school's well-resourced and he's well treated by his classmates (though their parents are another story), having moved him once I'd be very reluctant to risk it unless I was certain that it would be better - but a dx might indicate the right directions to consider for a move I guess.