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ASD: what if your child meets 2/3 of the diagnosis Triad? Grateful for info.

(50 Posts)
Grey24 Thu 22-Sep-11 10:08:11

I've been finding the SN thread a brilliant help during this year, as my DD had speech & lang delay, and subsequently been going through assessment for ASD - largely thanks to MNs info, which pushed me in the right direction to get her help. I'd be grateful if anyone could share their experience of having done assessment/diagnosis where their DC met 2/3 of the Triad, but not all 3/3 (hope that makes sense, not sure how to phrase it).
What happens then? Does that mean no diagnosis at all? Is there something else you can be diagnosed with ('communication disorder'? or does that not really exist?) Does it mean 'atypical autism'? Do you get left in limbo with no help at school etc?
To explain the background, my DD (2.3) clearly meets the first two criteria (eg she has never done pointing/sharing, doesn't use gesture, her eye-contact used to be very limited, though it's improving, she has speech delay etc, and doesn't do much pretend play, etc). But, we're not sure that she has the inflexibility/rigid routines aspect. She's certainly difficult to look after & wants to do things her own way (but that may just be typical toddler or might just be her personality as she's always been like that); she was obsessed with books from 8 months old until recently, but is starting to find other things interesting (like climbing....).
Sorry for the long post, I wish I could be more concise. We have a 'multi agency' meeting approaching & I'd like to know what to expect if she isn't 'classic ASD'. Any advice or info would be much appreciated. Apologies if I've used the wrong terms.

squidworth Thu 22-Sep-11 10:53:42

When my youngest son was dx at three I could not understand as he had no sigh of the inflexibility and need for routines and no sensory issues. As he has aged over the last three years I now can see that his anxiousness is displayed in his passivity and he is hypo sensitive so constantly seeks different stimuli. It is so different for each child and I actually like the ASD umbrella DX followed by the child's individual problems. You may find that they may still carry on with the wait and see approach.

squidworth Thu 22-Sep-11 11:00:34

That should say sign, also if my paed had not been so very experienced in autism he would of not have been dx a week after his third birthday and he may still have a language dx now.

StarlightMcKenzie Thu 22-Sep-11 11:20:19

I would advise you to find out as much as you can about the aspect of the triad that your child does not meet. It might not be obvious.

I'm not suggesting you look for things that aren't there, btw, but it would be awful if it did exist but not in a typical way, and it was missed.

FWIW, my ds is pretty adaptable and flexible or at least appears to be. People other than me don't notice the slight weepy eye at transitionsfrom one thing to the next as he is really sweet natured and complient.

If you are walking a familiar route, and you cross the road at a different time, does that get any resisitance? Is it noticed?

If you say 'right, we're going to do something different now' and stop an activity, do you get any resistance?

If she has to wear/eat something new?
If you 'forget' to brush her teeth one night will that cause mayhem?
If you stand in her way, will she go round you, or try to go through you?
If you put a different duvet on her bed will she be unable to sleep?
Is you insist she flushes the toilet before wiping?
If you give her a different cup to drink out of?

Are all the above easy peasy for you to do?

StarlightMcKenzie Thu 22-Sep-11 11:22:07

Does she flap, flick, tap her hands?
Does she shake her head?
Does she hum?
Does she make any other repetative sounds?

maryellenwalton Thu 22-Sep-11 12:07:41

I have to say it is extremely common for children to meet only 2/3 of the diagnostic triad if diagnosed before the age of 3.

I myself took quite a lot of false hope from the fact that ds (diagnosed at 24 months) wasn't even diagnosed with asd but pdd-nos as he didn't meet the third criteria (again, around the rigidity/ change of routine aspect...he was a doddle!)

But what I was told (and came to realise to be true) is that when they are so very young you really cannot say how their asd will manifest as they get older. They are still babies, but as they mature, and are less cosseted in many ways (and have to deal with the outside world so much more), they can develop fear of change etc as a mechanism to deal with anxiety or suchlike.

It's not always the case, obviously, but it's certainly not unusual

On the positive side, my ds who was placid, passive and generally easygoing and flexible at 2 is now, at 4.5, still placid and passive, and generally easygoing and flexible! It's just that sometimes now he will try and cling to a routine or oppose change. But it's still not a biggie. I'll report back in a couple of years <fingers crossed emoticon>

graciousenid Thu 22-Sep-11 12:12:24

well my ds was diagnosed with only 2 of 3 triad impairments ... in answer to Star's first questions yes they would all be easy peasy for us, he wouldn't be bothered by any of that (or more major things - sudden unexpected change of plans etc) & to the second set - no he doesn't do any of those.

He has anxiety issues when he doesn't understand what's going on (receptive language still an issue) but once we've overcome that he is extremely easy going (not passive - he makes his preferences quite clear). He has language problems (major), impaired non-verbal communication (he lost many of these skills at around 2.5 & needed reteaching), dyspraxia, social difficulties ... I'm not sure what diagnosis would suit him better, but CAHMS psych said yesterday he would be unlikely to meet criteria under DSM-V. I don't know what to think tbh.

graciousenid Thu 22-Sep-11 12:15:02

he's 5 in a couple of weeks btw.

The diagnosis doesn't make much difference to us tbh - sometimes it can be a useful shorthand, on the other hand it can lower expectations & lead to untrue assumptions.

lisad123 Thu 22-Sep-11 12:33:25

Dd2 didn't really have any major isssues of routine changes at 2.5 when first seen, but shes really struggled this summer with all changes and needs to know what we are doing in advance. She got her dx of autism at 3, so I think it's possible.

Grey24 Thu 22-Sep-11 13:06:08

Thank you all very much for your advice & experience - really helpful. I suspect my DD is on the autism spectrum, I just didn't know what would happen if she didn't 'fit' the repetitive/restricted bit. It's always so interesting and illuminating reading about other people's DC; it shows me the similarities or differences that I don't always know about.
Gracious - my DD could not be described as 'easygoing' or 'passive' in any way - she's always been very difficult to deal with. Not aggressive or anything, but cries/screams a lot, refuses to get in pram, struggles massively when she doesn't want to do something (even eg put her coat on). So that's interesting, if that could be part of the rigid/inflexible aspect. She's lovely but really hard work.
Star - my DD does have some problems with some of the things you mention - and I didn't realise that might be regarded as significant enough for diagnosis. So many thanks to you and everyone.
Also v helpful to hear how children can change later, & features become more pronounced.

Grey24 Thu 22-Sep-11 13:13:19

MaryEllen - thank you; you've illuminated ways in which my DD does actually have problems with change/outside world. In some ways she already does have problems like this - they just aren't as 'bad' as her communication issues. It's encouraging to hear how your DS progressed - and that he has remained flexible.

Could you or others tell me about PDD-NOS? Will schools/nurseries take that seriously (or know what it means? I'm not quite sure I do...).

If your DC has a PDD-NOS diagnosis: what do you tell people (eg your family, friends, acquainances - non-SN-aware people)? Do you say it's ASD (because it's similar) or do you use the term PDD-NOS? Sorry to be asking more questions; grateful for your experience.

Agnesdipesto Thu 22-Sep-11 13:42:52

My DS did not meet it when he first regressed, again the rigid part did not fit. But by the time we saw the psych 3-4 months later he was lining things up etc etc and now at nearly 5 he meets the third part big time. Not the rigidity in terms of routine / having to wear same thing / go same route etc but in terms of his limited imagination and repetitive behaviours.

EllenJaneisnotmyname Thu 22-Sep-11 14:12:54

PDD-NOS tends not to be used much in the UK. It's in DSM IV which is the diagnostic standard used in the US, where they seem to be rather in advance of the UK diagnostically (IMO.) In the new proposed DSM 5 things are defined slightly differently. I'm sure that at 2.3 you might struggle to get a DX in this country at all until your DD is older, when rigidity can become more apparant.

My DS2 is 11 and was not noticeably rigid in his behaviour under 3. TBH life isn't that routine and predictable at that age. It was when he started school and routines became more evident that we realised he didn't like changes that didn't go his way. He can still cope really well with huge changes, (including my recent separation and starting secondary school!) so long as he likes the change or doesn't feel threatened by it, but if you change something he likes, ooh, that's a different story!

Like those above, I'd say it's too soon to write off whole chunks of the triad. Every autistic child that I know is so completely different from the others that DXing them with the same disorder at all is hard to fathom until you work out the underlying causes for all the behaviours, and you may find that a lot of the causes are similar. My DS is mainly hypo-sensitive to sensory 'stuff' which means under sensitive. So he likes flapping and jumping, cause and effect toys, noise, movement, flashing lights etc. My friend's DS is mostly hypersensitive, hates noise, can hear lights humming, gets very anxious in busy situations. Chalk and cheese, but a lot of their behaviours are down to the fact that they sense the world differently to NT people, (and very differently to each other.) They have both developed obsessions as they have got older, which is how their need for order and rigidity has manifested itself. My DS has had many obsessions, early ones were playing with my hair and running around a circuit in the house. It has been Doctor Who, now it's a game on his ipod touch. They can last for weeks, months or years.

I have to say that being borderline or difficult to DX is a double edged sword. You have the advantage that your child can 'pass for normal' amongst adults and (sometimes) children, and that perhaps their difficulties aren't so serious, but it can mean getting support is more difficult and that there is a desire to fit into NT society that is difficult to meet.

I'm glad you've found MN SN. It's certainly helped me in the last few months. smile

graciousenid Thu 22-Sep-11 22:55:49

more evidence that the diagnostic process is bogus imo - for diagnosis the impairments are supposed to be present by the age of three - it really isn't the science the drs pretend it is (e.g. I know of several children diagnosed with AS despite clear & documented speech delays at 3 years old because they have gone onto develop 'normal' language) ... and for that reason I've given up worrying about it. The difficulties remain the same regardless of what they call it.

StarlightMcKenzie Thu 22-Sep-11 23:12:47

Yep. DS was diagnosed with moderate-severe Autism, and now the EP is saying Aspergers, which is nonsense too because they're getting rid of it.

I 'personally' don't feel ds has aspergers at all, but the Indie EP says that he'll be there in a couple of years if he keeps progressing at the rate he is.

The Indie SALT says that he'll possibly progress out of ASD once his language issues are addressed.

The LA SALT says she can't address his language issues because of his ASD gets in the way and it is all communication problems.

The LA EP says that he'll probably attend special school by Juniors.

The Autism Advisory Service say that he won't ever be able to make choices unless I give him visuals (he's been making non visual choices for 18months)

I care about none of this. What I care about is that the people that are helping him know what his issues and difficulties are, and they are a part of the solution.

I think the above stuff is useful information and tools you can use for finding your own path and directing your own strategies and that of people who work with your child.

pigletmania Fri 23-Sep-11 22:25:49

My dd 4.5 did not meet the tirad, 2/3, she did not display repetative and ridgid behaviour aspect so the paed has said that she has developmental delay, and will take a watch and see approach as she is still so young. I agree with that as she is making big progress everyday in terms of social communication. I think that as your ds is still so young at 2.3 years, they will take a look and see approach and keep monitoring.

pigletmania Fri 23-Sep-11 22:32:03

Those things highlighted by starlight dd is fine with tbh that is why I am happy with the look and see approach with dd as the other two could be to do with her speech and language, cognitive delay.

Grey24 Fri 23-Sep-11 22:38:54

Piglet - thank you very much for telling me about your DD - very helpful to see that 'watch & see' can be a good strategy (as it felt like it might be frustrating/delaying) - I will feel better about this now, if it happens.

Thank you everyone. Am absorbing everyone's differing perspectives & experience. Much appreciated.

pigletmania Fri 23-Sep-11 22:49:24

grey because dd symptoms are inconsistant I would rather take a look and see approach, as the paed said that he is not sure whether the autistic traits are due to her developmental delay or whether it is Autism and does not want to rush into things. DD is getting a statement to help her with her needs at MS school. So we just want to see how things go as well, and her social skills are improving so much, she does not do as much as the autistic type things that she used to 6 months ago, though she does display some traits e.g dislike of sudden noises. Its funny as she does not mind some, and does not like others. She does not mind the tannoys in the airports and plane engines, but hates hand dryers or drills.

pigletmania Fri 23-Sep-11 22:51:01

And she melts down if I am not the first at pick up at school and other parents are picking up before me. Its due to her lack of understanding and comprehension that her delay is also about.

zen1 Fri 23-Sep-11 23:18:06

Grey24, my DS (2.10) is just starting down the diagnostic route and we have been told that he strongly meets 2 of the Triad, but as he is quite sociable (when he wants to be), they want to do more assessments before giving a final diagnosis. However, have also been told that they are pretty sure he will eventually be diagnosed as somewhere on the spectum. My DS is very rigid and inflexible, to the extent the he expects me to buy exactly the same things in the same order every time we go into a supermarket otherwise he has a complete meltdown. He is also also extremely hyposensitive and engages in lots of sensory seeking behaviour. His speech and language is delayed and he talks mainly in nouns with very few verbs thrown in. However, he does make good eye contact, engages very well on a one-to-one basis and tries to communicate with people. It is very much on his terms though, so if he decides he likes someone he'll be smiley and chatty from the outset, yet there are people who he's known all his life who he's never made eye contact with. Very strange. It is frustrating though, waiting for a diagnosis and worrying that they will not get the support without one.

ArthurPewty Sat 24-Sep-11 08:15:28

Message withdrawn at poster's request.

justaboutstillhere Sat 24-Sep-11 08:25:19

Message withdrawn at poster's request.

pigletmania Sat 24-Sep-11 09:02:06

IMO a dx is good when the symptoms are clear cut and obvious, but dd symptoms are so inconsistent that for us, we are happy to take a wait and see option as she is changing allthe time. I would rather the professionals be absolutely sure, than to dx dd with uncertainty. DD has just started in Foundation year at MS school for half days at first, than building it up gradually, she is absolutely enjoying it and her social communication is improving so much, even though she is behind her peers because of the delay. The school are funding 121 support for a term, as thats what their budget requires, but we should receive the actual statement hopefully before the term ends so that funding will be in place by the time the next term starts.

I was worried that without a dx dd would not get a statement, but she did. I was told it was about need and not about dx. For us it suits us taking a wait and see approach as dd autistic type symptoms are not very severe and are diminishing as she is getting older. what is the most difficult thing for us to cope with dd is her lack of patience and occasional meltdowns due to her lack of understanding and comprehension, though this is getting better in time, but this is the reason why the school want to introduce her slowly into school. Because she has a 2 year delay, the headteacher said it would be like putting a 2 year old into a school which would not be good. Hope that helps, but everyones situation is different and every child is different.

LeninGrad Sat 24-Sep-11 09:05:24

Message withdrawn at poster's request.

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