the truth regarding asd dx...???

[mysonben]

I get the feeling that apart from the paed (who gave us a verbal dx of asd and a written report in which she mention talking to me about asd and a possible full autistic assement in the next few months), nobody else seem to agree that a formal dx would be the best route for ds.

Ok his nursery and senco have concerns and he is been refered to an EP. But i was told by the nursery manageress that a formal dx is usually not given to children under 5 (school age) unless they present with very OBVIOUS asd symptoms.
She went on saying cases like my ds who has subtle and not clear cut visible symptoms are usually follow and watch closely but not dx until school!
She also said they had been chocked to learn that paed had given us a verbal dx and shocked by the content of her report. WTF???

I'm confused these words are from the same
people who tell me ds has difficluties with speech, social interactions and play impairment,and they feel he needs extra support.
It seems lots of dc here on MN have been given dx under age 5.

I think the presentation of asd ( ie classical) affects the age at which the specialists are confident to dx ASD. Ds attends a sn (MLD) school where almost all the children are somewhere on the spectrum. Those that were Dxed early ( age 2-4) are the children that are (or were) fairly passive and content with their own company. Children like ds - (hyperactive, zero attention span, busy, noisy ( but little language), over/under sensitive, needing constant adult input), or those able children meeting their early milestones in all but play skills are more of a puzzle, because other things could be causing their differences - even if they do have (relative) impairments in the triad. Ds EP pointed out that all children on the spectrum have very uneven ability profiles but so do some sn children not on the spectrum. The uneven profile becomes more measurable with time.

I totally agree with electra, it was the same with my DS. Everything appeared normal at 2.5, except his speech was delayed, and we were told that with SALT he would more than likely catch up, yet he was dx with Autism aged 3.2. He's now 5.8 and presents with a lot of the classic traits that weren't showing at 2.5.

I guess what I would think Electra is that if they differ at 2.5 and 5, think how it owld be to be a teenager with no DX, traits or complete ASD, and already inn that crap stage of feeling l;ike you're a misfit and the world ahtes you?

I think if you fit the diagnostic criteria then a DX gives you reasons, if not now then one day. I believe from my own personal experience that is very powerful.

Peachy- do you mean as your boys got older their asd traits become stronger more visible?

I think all electra is trying to say peachy is that a lot professionals are reluctant to label a child at such a young age just because they may show some signs which could relate to autism.

I was devastated when my son was dx at 3 as his only real problems at that time were slight speech delay, and a lack of imaginitive play. However, he is now 5 and more and more traits have showed themselves over the last couple of years, so in my DS's case, the diagnosis was right, but I do worry that some children could be labelled at such an early age when they may just be a little behind others.

I think definitely by 3.5/4 it becomes obvious, but not necessarily younger than that unless they are quite severly affected.

Hope that makes sense !!

Electra,

see this thread re misdiagnosis

www.mumsnet.com/Talk/special_needs/742398-Interesting-article-re-differentiating-asd-from-other-diso rders

Electra didnt even cross my mind LOL! Can't see anything in your messages to suggest that

if by classic ASD you eman the level of the most severe then absolutely my boys don't have anything like the same issues, thet do have severe issues though. I should point out whilst ds1 is HFA / AS, ds3 is more severe- has very significanllt delayed speech, probably will need care all his life etc. Not the most severe but my definition of severe hinges on whether lifelong care is needed, for ds3 it is.

DS1's issues are different: eating disorders (so I guess technically life threatening but I try to forget that), aggression- he gets HR care DLA and absolutely so, but from an incredibly different viewpoint- he gets it brecause he needs 24/7 supervision as he is a danger to others and himself (starts fires, attacks people etc).

Anyway thats all irrlevant......

Mysonben,, yes that is what I meant- as they aged the stuff clouding the DX seemed to fall back whereas the ASD traits came to the fore; especially with ds3 as he became mroe able to demonstrate things such as flapping, routines, stims etc (has passive ASD though that is becoming less pronounced as time passes in favour of more standard ASD).

Lingle, I probably agree but think my area is a bit different- categorically nobody ehre gets a dx that young, its something i've only encountered on MN. DS3 didn't regress until almost 3 anyway (just amde it into the timescale). I do think it's very young for an asd dx, OTOH there's a big part of me thinking if the only way to access SALT / earlybird / etc (all things we didnt get until post-dx) was to have a wrong DX I could be tempted, but thats as someone who sin't dx focussed, my links with the asd field are so old (I worked with asd young adults at 19) that I see it as no more than a functional title that enable me to get the boys help. I've a good understanding of labelling theory through psych at Uni, but whilst I understand its incredibly emotive to some poeple, thats just not my experience I guess.

We ahd to wauit 3 years whilst ds3 floated between a DX of ASD and SLD; both services refused support - sld don't see kids with a possible asd dx, and vice versa. Just 3 days ago I finally received the letter (dated fenruary) formalising his DX and for us its a ticket to SS support, naming it in hsi statement, etc- all things he ahs been denied repeatedly.

Can I ask a qurestion? Sorry- probab;ly shouldnt, my last message was so all over the place (soorry)

People who are concerned about their childs DX of asd- how were they diagnosed?

DS1 was clearly enogh HFA by the time he was dx'd at 6- SPD, eye contact, all the usual and we ticked both trad and Greenspans definitions.

DS1 ticked Greenspans when I disovered them fairly recently, however the Paed struggled to define for a while. What she used (and we were a trial family, the first in this part of Wales definitely) was a computer absed diagnostic system. It hepled remove the clouds and narrow things down.

basically how it works is that the diagnostic wquestions are on a sort of very long survey that is tailored before the meeting to your child- age, history, etc. Questions are answered by aprents and also with the support of reports from SALT and observations (for us over 3 years) by the Paed.

It just helped cut it down to essentials and I felt very striongly that we got to the core of ds3's pesonality, and am absolutely certain that the dx is correct. It helped cut out 'misfire' clues like eye contact etc (DS's is intermittent so depends on whree he is that day) and look at things more widely

Agree Peachy, ds autism ( with LD) is now unmistakable - however at 3 the picture was cloudy. It was obvious he had delays - none said LD then. Yes he had lost the few words he had developed, yes his eye contact was ( is) iffy ( on his terms only) yes he had no imaginative play - but he also had other delays and differences. I do wonder what difference it would have made to ds if his asd had been dxed preschool - he could have started in the sn school for instance (their nursery is asd specific)- and got nhs salt perhaps. Would I have done things differently at home? -We spent ( time and money) as much as we were able on help such as salt and sn books anyway.
I think the important thing was that we knew ds was not developing at the nt speed of light! So we did all WE could - play, speech, sensory, diet, behaviour control. It was when he started school and others needed to interact that not having a dx ( beyond DD) was a ( huge) problem.
Diagnosis was delayed ( excessively- ds was nearly 8) by uncertainty ( was it ASD or LD with traits). This delayed support. Anything that helps clear the fog and catorgorise the support a child needs is a step forward. ( LEAs seem to strongly prefer Dx!) Technically it should not matter which label is most suitable - what we all need to know is what are the childs needs and how best to meet them? So a questionare that can help paeds is astep forward!
Long rant sorry!

I take all your points addressed to me Peachy.

"there's a big part of me thinking if the only way to access SALT / earlybird / etc (all things we didnt get until post-dx) was to have a wrong DX I could be tempted"

I think this is an entirely legitimate approach, and I suspect I'd take it if I had behavioural or sleep issues on my hands. With sleep I'd try anything frankly. After all, we're not here to finesse the medical profession's understanding, we're here to figure out the needs, figure out the help needed, and figure out how we get from one to the other.

"I felt very striongly that we got to the core of ds3's pesonality"

That is so wonderful and it must help you keep a clear head. I do try to keep your story in mind when I'm tempted to overcriticise the current diagnostic processes - they are clearly working extremely well for many many families and bringing enormous relief, clarity and help.

I've had one insight from the SALT where I thought "oh yes!" (about being a visual learner). And we concur completely about the state of his receptive language skills. But everything else is way off the mark - I sit there thinking "whose child are you talking about here?" and "why do you not listen when I tell you he can do this?" and "why do you have no interest in hearing of his strengths, why are you just trying to list deficits?". They may be professionals but I know my own child. So you can imagine why I'm such a Stan the man devotee.

What should be available is an early intervention package where there is a concern

DS4 for example is extremely high risk, we know that, and as time goes on dh and I are thinking AS. He's only 15 months though, so too young to do anything.

Woudn't it be sensible though, where a child ahs 2 sibs with an asd dx and another with a related dx to put access to salt, etc in palce anyway? Anything to minimise the likelihood of developing it?

He's bright, has one or two words but does the distance thing and is quite withdrawn around unfamilar people- it may well be shy BF toddler syndrome, but it may also not be and earlier help is provided the better

yes yes yes yes yes yes yes Peacy to your 10.08 post (god I must do some work).

Greenspan says the whole "wait and see" thing is actually based on old-fashioned fundamentally pessimistic assumptions that (i) all autistic kids are more alike than different and (ii) if you have got autism, there is not a lot that can be done about it (iii) you might as well let the parents have a few happy years before you drop the bombshell on them.

Surely we should be screening for pointing and waving at 18 months and making video clips available on the NHS sites of what "does he bring you things to show you?" really means. And see if they can answer choice questions. And we should just call it "communication" so mums don't all run away.

The whole focus on expressive language is a complete red herring save where there are motor skills problems with your mouth (blowing, that kind of thing).

And then all those stories about "Fred didn't talk until he was 3" would no longer cause such family problems. Because some kids don't talk till they're three but they probably pointed at 15 months.

Hello

I am one of the 'unsure about the diagnosis' mums as people are probably aware from reading my posts. DS's assessment was initiated by school as there are issues with peer interaction, concentration and fine motor skills there. At home, we have no real issues other than the fine motor concerns (when I say 'real issues' what I mean is yes he ignores us occasionally or has the odd strop occasionally but nothing outside of 'usual' for a 5 year old).

DS was diagnosed via multi agency assessment at 4.9 years, assessment comprised OT (school visit, clinical assessment and sensory profile), SALT (clinical assessment) and paed (medical check with DS and interviews with us across 2 separate sessions but did not actually observe/assess DS). The clinical visits took place on 2 separate occasions, 2 hours each, and we had the feedback at the end of the second session - so from start of process to DX was about four weeks.

We were in more or less complete agreement with the OT bit and some of SALT (language skills are normal to above average but can be functionally reduced by concentration issues) but not all. I did not necessarily agree with her assessment that he struggles to describe how people are feeling, based on what I know/see of him in the real world - but I can see how she would have reached that conclusion based on clinical assessment (DS is very perceptive of 'real people's' expressions and intonations etc but when asked to identify expressions from pictures he told the SALT "I don't know how they're feeling because they're not in our world").

Paed report was referred to as a semi structured interview so yes she was working to a set list of questions but nothing like the GARS or similar and certainly not computer based diagnostic. It does does highlight DS's three ASD traits (dislike of sudden loud noises, very occasional hand-flapping when agitated - by very occasional we mean maybe once/twice a month - and one or two irrational fears such as not liking shop dummies) but it also reflects our view of him based on home life which is - easy child, no real issues other than the fine motor and concentration stuff coupled with shyness with strangers.

So I think our feeling is that the DX has been (a) pretty speedy (b) based on that small handful of what Greenspan would refer to as 'secondary characteristics' plus issues with peer interactions which in Greenspan's view is not an ASD criteria and (c) clinical assessment that didn't really reflect him as a person in terms of social interaction, even if it did assess his practical fine motor/concentration stuff very effectively.

That said though we are not disputing that he does have issues at school, we are fully prepared to accept the ASD DX if a more structured GARS type diagnostic assessment indicates that he is (our paed interview was quite waffly to be honest), if an ed psych report backs this up and if following consultation with a second paed they are in agreement with the original. We just feel at the moment that we were kind of railroaded through the whole thing.

HOWEVER the DX has triggered some additional OT for fine motor work and sensory stuff to help concentration, all of which has been beneficial, so from that perspective it has been useful, just traumatic because we never suspected ASD. I think when you have never really had concerns or suspicions as a parent then it is bound to come as more of a shock.

A flexible nonspecific early support package (not dependent on Dx!) aimed at prevention would be so sensible! Brilliant idea Peachy. I would have lapped up any help for ds I could have got! It should be available to all who show delays or who are at higher developmental risk. If only it was inexpensive to set up- such a system may be cost effective in the long run.

We were supposed (but logistically ahd to pull out) to be part of the Sibs research which hopefully might lead theway to such things?

With ds4 I found even the paed does things like look at him andsay he's ok look at his eyecontact and I know that is not enough. Its a great sign, but ds3 regressed after all

I also agree that Peachy's idea of an early support package would be brilliant....

In an ideal world I also think assessments should include video 'unseen camera' footage taken of the child in either home and/or school environment so that issues can be assessed in a more 'natural to the child' setting (something like they used to do on Little Angels so you get a true picture of the child). But that ain't never gonna happen, too logistically complicated and prohibitively expensive!

I do agree with you Peachy and Lingle too that for many families the diagnostic criteria work well and enable access to that much needed support.

anyone else got ideas about this non-labelled early intervention system - about 15-18 months?

Greenspan is full of ideas about working on pre-gestural communication and problem-solving from 15 months on so it shouldn't be beyond the wit of man.......

I am a parent who struggled to get any help for my child - he has very significant needs ( he has mod/sev LD as well as ASD and ADHD) but had no 'useful' (ie the sort that opens gates to help!)dx till age 7. He went downhill very rapidly unsupported at ms school. I can however see that a dx thrust apon a child who is well supported (home and school)and making happy continous good progress in all areas could be unwelcome!
Ds was able to access things like OT that had previously been denied. The difference was not the need (that had always been there - perhaps even more so when he was younger) but the Dx.

whoops meant pre-verbal gestural communication!

Personally I would have liked someone to come and show me how to work ( Ot, salt, sensory)through play. We become our childs main therapist anyway so why not give us parents(carers) the tools? I have learnt from watching professionals such as ds ABA trained private salt - it is different to reading books. (Ds could not access nhs salt because he did not have enough language).Of course this would need regular support. And yes around 18 months or earlier although starting later should be possible. We missed the boat on lots of things though no fault of our own ( the slow systems) so I can see the advantage of flexibility. If nonDx dependent support was there early on - labels would be less needed.
I tried to take my very delayed child to all sorts of things like tumbletots and music stuff but ( apart from the cost!) we the ones who most needed the extra stimulation - did not fit in ( ie disrupted the classes!) and left. YKWIM!

I'd also like that magso, i'd also like time on things like floortime which I believe is efective and ds4 would appreciate, being stuck out in the sticks (and broke) prohibits a lot of things like that- actually a lot ios barred by means of logistics. For example, the NAS Help course s one I haven't done because of childcare, they only run in chool hours and we have a toddler; likewise th4e sessions run by the ASD team here

They say 'can't you leave him with family'- well no, my parents live in England (a 2 hour return journey plau stupid bridge toll) and dh'sare not interested in the kids

DS4 has been going to baby gym, signing and now a toddler music group as ways of expansing social interaction (cauhgt in that trap of other SN kids so not a lot of visitors etc), but we've found an interesting lack of boys in those environments and have had to leave signing for reasons similar to Magso. Also of course Carers Allowance does not allow for much actiovity so if we do save for it and pay in advance as you do, its not easily replaced

Plus you ahve to hang over your LO making sure the other kids dont pass him their milk (casein intolerant) or feed teir biscuits (CF GF diet)..... it gets hard LOL

DS4 pointed today (yay!) which ahs helped alleviate DH and my worries a little though i'd still place a few quid on AS. can't explain why, though. But he would definitely benefit from SALT ( a drop in class? easily arranged), etc. Some kind of toddler group perhaps where other aprents are in similar positions 9and free, as CA doesn't stretch very far).

I dolike to have the label I think, esp. for ds1 who is one of those kids who doesn't look SN but very definitely is (statement etc). It can help to say 'I'm sorry, he's got ASD'. And tehre are a lot of things that LEA's do when theya re presented with asd that benefit any child- tiny classes (9 in ds3s) etc. I used to like ti becuase it stopped me blaming myself as well, but now I have begging letters from genetics service asking us for screening (filed under B for Bin) which seems to shove the blame back again LOL. But until they can promise me the samples they want won't be used for research into procedures for antenatal swcreening then they can go fly. not for us.

I think that parents should be given more specific info regarding the actual meaning of pointing, communication gestures,...

When we had the initial salt assessment for ds he was 2. She asked did he point as a baby? I said "Yes" ...i was wrong in my perception of pointing, ds did not point at things he wanted to show us , we taught him to point at things he wanted from around 16-18 m, i recall ds taking us by the hand and using our hand to gesture towards what he wanted, and us saying over and over "what is it you want? show mummy/daddy!" and we used to physically make him point. After a while he got the hang of it. But his pointing is still wavering sometimes he uses his whole hand to point , or we still have to remind him.

The same about his babbling, i said yes ds was babbling and copying sounds , the thing is i didn't realised that his babbling didn't progress into proper sounds , it stayed the same and evolved into jargon and not words.
If the salt would have been more specific with her questions i guess she would have seen the red flags of asd.
Again it's only now when i see the things that dd (14m) can do by herself , it come naturally to her all this pointing, babbling, imitating us ,.. that i truely realise i didn't see the signs with ds
if i did he might have got help sooner.

that's exactly it mysonben. There should videos sent to your email/phone unless you opt out showing "expected" types of pointing and "bring it to show mummy" behaviour.