Diagnosis pickle - any sage advice please?

[BigWeeHag]

Background: DS1 is 4y 8m. He first saw a (private) SALT at 2y 8m (private because HV wouldn't refer him until he was 3.)

January just past he had a multi-disciplinary assessment, the end of which was a verbal DX from the paed of HFA/ AS/ ASD. I had an impression that she had decided that before she met him.

Last week, the Ed Psych saw him at Nursery, and then came out to talk to me.

She, like me, does not see ASD.

But DS1 has very clear sensory issues, the auditory processing part of which appears to be what has caused his poor speech sounds. His visual stuff is extremely sensitive, his "strong areas of interest" are all visual things (anything with a screen, numbers and letters.)he uses visual schedules for morning/ evening routine and toiletting. He is a Squrimy McWrigglepants, which she noticed as being much more so than an average 4 year old.

He is also bright - tested non-verbal score was 133. She said the verbal stuff tested average, but that she felt it wasn't accurate, as his speech problems/ auditory processing got in the way. So his presentation is patchy, which I know is a hallmark of neurological "things."

BUT he is socialising. In the last 6 months, he has formed a really, really strong friendship, he has started to notice other children and want to play. He directs my attention to things, lots of factors that don't say ASD. In the last few weeks, he has started playing games with figures - proper imaginative play.

He is due for ASD assessment/ final DX in 2 weeks.

I have racked my brains and done lots of reading to try and find something that "fits" my boy - but all I can come up with is the Sensory Processing Disorder (which is not a DX). He doesn't "fit" ASD, ADHD, any of those things.

I am in a pickle, basically. The Ed Psych is concerned that he will be labelled unecessarily (she believes there is over-diagnosis.) I see that, and also have that fear, but he needs SOME kind of DX in order to keep getting the SALT and OT that he really, really needs. It is doublethink! The SALT requested some resources for him and was told she couldn't access it without a DX - how stupid is that exactly?

Anyway, if you have, thanks for reading this essay, hope someone (anyone!) has a similar child and has BTDT!

Tricky.

On the one hand, I wouldn't trust your ed psych further than I could throw her. Anyone who talks about "labelling" and says that ASD is overdiagnosed in the UK is not one of the good guys. Or particularly bothered by facts.

On the other hand, ASD is sometimes misdiagnosed; I know people whose kids have started with an ASD diagnosis and ended up with something different. And vice versa. So I think your hunch is probably right.

I think you have to be pragmatic here - if he is treated as having ASD, will he get the wrong therapy? If the therapy he gets is appropriate, I'd go with a provisional ASD diagnosis and focus all my efforts with the doc on making sure the medical notes fully document all the contradictions and complications which mean this can only be a provisional diagnosis and show he needs to be reassessed in - say - a year. Hopefully at that point there will be enough info from school etc. to get the correct diagnosis and you can go from there. Meanwhile he will have a diagnosis on paper, you can apply for a statement ... and with any luck a passing house will land on the ed psych in the meantime.

Your description sounds similar to my ds2. He has a dx of AS but doesn't really fall neatly into that category at all. The Paed has mentioned possible PDD-NOS but tbh ds2 is a bit of a puzzle.

He is a very visual learner. When the Ed Psych did some informal testing with him at age 4 his results on the visual/patterns section were amazing. He also has what I think is a photographic memory.

On the social side of things he seems to have a range of friends at school. As he's got older (he's now 7) his play is very imaginative.

He used to find it very difficult to stay still. I've since discovered along the way that a lot of this is due to sensory issues. With OT help he has become much calmer. Still very active but no longer as manic as he used to be. It's definitely worth pushing for OT input.

I'm surprised that the SALT needs a dx to access resources for him. My other ds (ASD) had a lot of SALT input before his dx.

I would look into something like PDD-NOS but otherwise just take the ASD dx for now if it's offered and use it to access the services your ds needs. The dx can always be changed later if needed.

agree with coppertop and r3. r3 makes a very good point about possible ed psych vested interest in not labelling. I wouldn't battle the dx - as for pragmatic reasons, it should allow you to access SALt and OT for him. and also sensory processing disorder doesn't tend to be dx'd much in the UK.

Showing the other side of the coin, as to what happens without the DX - my DS doesn't sound entirely dissimilar - he's 6, severe language/social delay at 3, went through the DX process at 4, which concluded - probably not ASD official DX was language delay with subtle social communication problems. Apart from SALT until he was 5.3 (he got discharged when he hit normal range on formal SALT testing) he has had bog all help. So without the DX children can slip through the net....

I'm afraid I don't agree with r3dh3d that with a diagnosis of asd your child will get the wrong therapy as it implies that the agencies actually differ their provision according to dx, which they generally don't.

Also, imo any strategies for dealing with a child with ASD are appopriate for any child. It is not true the other way around.

I would be inclined to go with a dx, any dx really, as you will regularly hit brick walls without one. An ASD dx may be the most satisfactory however. Just imo however.

Thanks guys. I think I will have to just go along and see what the next chap says (Autism assessment.) Trouble is, as with the MDT meeting, it is in an alien place and with strangers, so DS1 will come across as more ASD than he usually is IMO. Wheras the Ed Psych saw him at Nursery, where he is happy and settled, in fact I was surprised she saw as much as she did. (Nursery teacher is also my SIL, best friend and DS2's godmother, and is in proper denial, as oppose to my slight denial )

I haven't asked for a statement or Statutory Assessment as I hope his needs will be met at Stage 3 (SA+, terms are different here in NI.) I don't think he'll struggle too much at school, he'll only need very basic support (visual schedule, toiletting reminder etc)

I guess I wish there was some condition I hadn't heard of that neatly explains everything, in a nice wee box with a ribbon on it. Oh, and for it to be grow - outable. Don't want much, do I?

BWH

SA plus is not really worth the paper its written on, it is not legally binding and the goalposts can be so easily moved.

I would consider applying for a Statutory Assessment sooner rather than later. Hoping that his needs will be met in school is a long shot particularly the further he goes through the education system.

Angrywasp, I think that was the point r3dh3d was making

"I think you have to be pragmatic here - if he is treated as having ASD, will he get the wrong therapy? If the therapy he gets is appropriate, I'd go with a provisional ASD diagnosis "

She was saying that unless the ASD dx will lead to 'wrong' therapy, go with it for now.

BTDT, said no thank you to formal assessment for various reasons I'm happy to talk about if you want; similar experience re nursery teacher; no regrets so far (one year on). Getting excellent service from school nursery and the teachers/head seem to feel more of a sense of "ownership" of DS2's problems because they aren't wrapped in quasi-medical language - but suspect I am very lucky (so far - no shortage of people telling me how and when it may all go pear-shaped). I have mentioned Greenspan to you before. I understand you work in special needs. Do you have a view on his work? Would you not apply his concept of multisystem sensory disorder to your child? Or was he never perseverative?

I think that angering your family is something you only do if you really have to, especially if you risk losing the goodwill of useful members of your child's "team" and getting distracted by battles with them. But at the end of the day, if you need the SALT input and can't get it without ASDdx then perhaps you'll have to accept provisional dx?

No, he doesn't really do repetitive behaviours. Although he does have routines and rituals, htey are not immovable. TBH, I was working at the very severe end of PMLD, so my expertise is in Intensive Interaction, communication etc - this level of SN is really new to me!

Playing games with figures- what games I wonder? moving them as the figures represents doesnt actually count as imaginative play for ASD- it needs to be mroe substitutive play (so picking up a colander, popping on head and insisting its a helmet type stuff)

it could easily be a sensory processing disorder you know, why wouldn't you feel that's a dx? Increasingly so I find. Have a good powerpoint from Uni on sensory as well, feel free to mail me for it

peaches and cream 04 @ bt internet dot com

Seriously, Clarissimo? I just talked to the Nursery teacher, and asked her to do specific obs for that and for other imaginative play. I remember for DD everything, and I mean everything "talked" and interacted (green beans, clothes pegs, shoes, etc) and that is something DS1 has never done but I had thought it was a boy/ girl thing.

SPD isn't a DX according to the DSM IV I think. You sent your PP before, it was great!

I can never remember where I sent it LOL

DSM-V due out in 2012 so be aware that things will change thenbut also be aware that a lot of people want to place SPD firmly on teh spectrum anyway

yep the imaginative play thing is very often kisunderstod by professionals, playing with dolls in a dolls house or whatever actually isn't that imaginative in terms of being observed or re=-enactmanets. DS3 does a lot of that sort of thing but no substitutive play.

I bet you could line up nursery and otehr teachers and they wouldn't know though; do you relaise that even priamryn teachers get only a day on SN in their training?

Oh yes! I am secondary trained, I think we mentioned Downs Syndrome once in passing. I was lucky, mature student and all my experience was with people with SLD/ PMLD. Teaching NT kids just isn't the same.

I would like all teachers to go on a course where they are made to chant "Differentiation by outcome is not real differentiation," "children are all different" and "YOUR BEHAVIOUR AFFECTS THE KID'S BEHAVIOUR!!!" Oops, gone off on one.

LOL

The bloke who led my course (retired now) used to run praimary SN training: one afternoon that was generally considered optional.

And then they getb into schools, wonder why the kids aren't achieving or theyc an't see the dx and get all when aprents doubt tehir expert opinions.

We ahve some great etachers on the MA, really committed to SEN, but in all truth the teachers at our school are no more expert (barring our rather nice ENCO who gets hit down all the time by Head) than the gorgeous woman in the local Spar who lets the NAS unit in the village bring it's users in for skills training sessions.

Totally agree w. Jaka. As these therapies tend to treat the symptoms not the cause, then as long as it walks like a Duck and quacks like a Duck, it's going to respond to webbed feet therapy and swimming lessons.

When it starts to say "moo" and give milk, it's time to reassess.

lol r3dh3d

I have to agre though- there's no such thing as a pure asd intervention, try and see is all.

I am sure I mentioned it before but dyscovery centre or bibic are good with the sensory stuff, google them