DS has been diagnosed with ......

[twainiac]

Nothing.

He was under assessment for ASD. I saw the paed last week who did the DSI 1 (I think) and he was assessed in school by a specialised SALT. The results of the DSI and the SALT assessment both showed that he does not score high enough in the 'repetitive and restrictive thinking' part of the triad.

So, not sure where to go from here. I do kind of see their point...... However, if we say we are going somewhere after school he gets cross. He has little theory of mind. If things don't go how he thinks they should, he gets cross. He doesn't meltdown - just gets angry and stomps off. He has never been physically aggressive but his manner is aggressive.

The paed did acknowledge that he has social communication difficulties, but that's it. I don't want to chase a diagnosis for the sake of it, but already people ( ie my Mum), are saying 'well if there's nothing wrong with him, you need to be firmer'. I so don't think that is the case.......

I realise he is not that severe, but I guess I thought a diagnosis of aspergers would enable me to explain things to him and to others. I still think it pretty much fits him.

Has anyone else been in a situation like this? Or am I wrong? Maybe his behaviour is not severe enough to warrant a diagnosis? Although he is on SA plus and school have taken advice from the Social Communication Team, so they recognise he has difficulties. I am so confused!

Thanks for reading x

Hi Twainiac. There have been recent changes to the way that ASD is diagnosed and unfortunately that means that children who would have once fallen under its umbrella, no longer do.

I would definitely not be taking the word of one Paed though, there are just too many out there ignorant to the traits of ASD as they display in the real world.

What are the traits he has that make you feel as though he might have ASD?

How old is your son? My boy's difficulties became much more apparent in Year 4 when the gap between their social skills and those of their peers widened. Their rigidity of thought and sensory issues also became much more apparent at the same age. I don't think they would have been diagnosable below the age of 8 but there is little doubt we have the correct diagnosis at age 11.

How old is he?

Not getting a dx doesn't mean he hasn't got something.

But the dx criteria have changed and Aspergers is not being diagnosed at all now by 'some' paeds if they are following the US model.

Morning!

You might find it helpful to look at Ross Greenes book The Explosive Child. It is very helpful as it focuses on the skills children lack and how you can work on those, rather than a particular diagnosis. My DS has a couple of possible diagnoses and the approach helped me to step away from 'is it x or y? ' and just think about what he can't do and how we can help.

Of course a formal diagnosis helps no end with access to services and people understanding, so no harm at all in asking for a second opinion or re assessment in a year or two either.

DS (4) has a private diagnosis of ASD (supported by indipendent SLT, OT and EP reports done over time). However, the assessment by the old LA's multi-disciplinary team resulted in a 'non-diagnosis', i.e. acknowledging he has language difficulties, no imaginary play, rigidity, extremely limited diet, etc., but not not enough, in their view, to reach a conclusive diagnosis. He also has "such wonderful eye contact" in their words -- you get the gist...

If you are not able to pursue the private route, then I would recommend getting fighting for a referral to the National Centre for High Functioning Autism at GOSH.

Thank you all very much.

Lyllie - he struggles with social communication. Has little empathy for others. Things that other children just 'get' as being appropriate, he doesn't!

Oneineight - he is 7 and in year 3. His social skillls, or rather the lack of, they do acknowledge. Maybe other traits will become more obvious as he gets older too.

Starlight - the paed wasn't using the new criteria, he would have diagnosed aspergers if he felt DS warranted it. I still think he is not NT, the problem now is convincing others.

Thepoodoctor - thank you, I have the Ross Green book already and try to follow the ideas. That's part of the problem - other people think I am letting him get away with bad behaviour ( ie not telling him off, not punishing) - and without a diagnosis I am struggling to justify myself.

Kakty - thank you for the tip about GOSH. Do you know how to get referred? Is it the GP? The developmental paed doesn't want to see us again, but we do have another follow up with the community paed so maybe I could ask him.

In general, it seems like it may be best to wait a year or two then - I guess I can see secondary school looming (although he's only 7!) and just want to do the best for him.

Thank you all so much - and sorry for the essay!

Kakty - I have just clicked your link and it explains all about referrals. Thank you again.

Hi Twainiac,blimey you could be me!We are in more or less the same boat except we are still waiting for referral for dx.
Ds is 7 and also in year 3,he also has a social communication disorder and certainly has aspergic traits.We saw a clinical Psycologist in September who said "There's a distinct possibility it could be Aspergers but I need more clarification from school",all so well and good.School filled out loads of questionaires and since then we've heard nothing.she said that based on those she will then decide if he should be referred.I also feel that it's the repetitive/restrictive behaviour that is the problem.He can be like it to a degree but prob won't score high enough.However he also cannot get empathy,very rigid and manipulative in play,incredible reader but only reads non-fiction,obssessed with star wars and being characters from it,aggresive,hits himself,threatens to kill himself,very fussy eater and so on.
We've had enough so are no going to see Robin Pauc at the Tinsley House clinic which will not provide a dx but will give us strategies to cope and things we can do to help him.He also has a dx of dyspraxia.
Why don't you look it up and see if it could help?

Good luck

It's crazy isn't it. A diagnosis given on a system of tick-boxes, and if you get (eg) 50/100 you get a diagnosis, but 49/100 you don't. We were 'offered' a diagnosis (asd) for ds as he was also 'borderline'. As if by not taking it he would suddenly be NT. It's not like an illness for which there is a blood test or something.

Anyway. In your position I would definitely carry on interacting/parenting/teaching him in the way you are - he is the same child whether or not a formal dx is given, and those strategies are clearly working. It's not a b&w issue of "oh well he wasn't diagnosed therefore he's completely neurotypical but just naughty/odd/difficult/immature". It's a much more complex greyer area than that.

I have always looked at my ds in terms of his need and his difficulties rather than his dx. We started intervention (ABA) before he was diagnosed, as whatever the outcome we knew he needed help.

School are already giving him support which is good, and actually if you have a good school they'll provide this support with or without a diagnosis, but based on need. But push to meet with them and discuss what support they can provide based on his actual difficulties (not just a 'diagnosis').

In terms of what to say to your mum etc, tell them it just because he wasn't given a full diagnosis doesn't mean he doesn't have neurological differences which affect behaviour etc (I would actually be tempted to say that's what the paed said and bandy around impressive-sounding scientific terms which you suspect she may not understand ). Reiterate to her that with or without a diagnosis he is the same boy with the same difficulties, and as his mum you will be continuing to give him the help and support he needs.

Really useful link to the GOSH service, I didn't know about that.

disorganised have the Star Wars obsession/restricted diet been incorporated under restricted/repetitive behaviours? Because I think that's what they are. We were lucky to have a Paed who observed over four years (though four years didn't feel lucky at the time). She looked at my dd2 in the context of the criteria, not the other way round. She allowed her clinical judgement to take precedence. Assesment tools are just tools in a box. It varies so much by practitioner.

Handywoman,I'm not sure to be honest if they have as we still don't know if ds will be referred to Lorna Wing centre.I have no idea whether they are classed as obsessions/restrictive behaviour of whether that is classed as "normal" for a boy of that age?I find it very hard to know where the line between what's normal with say fussy eating and what's not iyswim?
Ds's teacher said that when they got the questionaires from them he filled it in as if it were ds's worst day if you get me so hopefully they'll see that.Also ds's teacher is also the senco for the lower school so I'd like to think he knows what he's doing wrt that.

Hmmmm, interesting. Disorganisedmummy - they do sound very similar! To be honest though, my DS doesn't really have obsessions or any restricted eating patterns. I mean, he has favourite tv programmes - he will watch sponge bob for quite a while - but not to the exclusion of everything else, and it's not all consuming for him. I don't know, maybe he doesn't quite meet this part of the diagnostic criteria when it's a box ticking exercise (I know what you mean bialystockandbloom, it would be good if someone could look at him and use their judgement a bit more!) And like you, disorganised, I find it difficult to tell what is normal for his age and what isn't.

bialystockandbloom - that's a very useful point about how to word things to my Mum, I think she jumped on the fact that he didn't get an ASD diagnosis, I should have laboured the point that the paed recognised he has Social Communication difficulties.......

Greener - so you had a second opinion and are still in no mans land??? It's so hard, isn't it? I know my son is not NT, I also know he is not severely impaired, but it would help to have a name for his problems.
How old is your DC? My DS is 7 and I think I will take the advice of others on here and maybe pursue a second opinion in a year or twos time. I don't want to be eternally chasing my tail to get a diagnosis, but I still feel he does warrant it. His difficulties may not be severe but they are there, even if not obvious to others. I will also start a diary again - have done this on and off, but think I need to religiously complete one now.
Sorry to hear about your family, I am still hoping to educate mine......