can you guys clear something up for me?

[thederkinsdame]

Since DS was dx last year, I am struggling to know how to explain to other people (i.e. in wider circle of friends family who may not know much about it) what he has.

DS has an autistic spectrum disorder, likely aspergers, but he is still at pre-school, so we won't know for sure for a few years. I guess I just feel confused about how to best explain. 'autistic spectrum disorder' is so long-winded, and little understood by thw wider population, 'aspergers' feels wrong as that's not been diagnosed yet, and now it's been indicated to me by several professionals that 'autistic' isn't right either as it tends to be used to refer to people who have classic autism. What terms would you use? Am I being silly worrying about it? It's just been niggling away at me and I don't want to come across as being a bit thick when I speak to professionals.

WWYD?

Asd to pros?

High funtioning autism to friends?

I would (and often do) go for 'he's on the autistic spectrum.

Thanks, chaps. Saintly, I was even picked up on 'high fucntioning autism' so I feel that the more I try to work it out the more I tie myself in knots! particularly, I do use this term too, but I guess I've just got lazy in saying 'he's autistic' Maybe either of these are the best.

Starlight, I know what you mean, and I think HFA sounds robotic, too. I think I'm being daft tying myself in knots thinking about it, but being corrected by professionals has annoyed me - I feel like they are trying to put me on the back foot so I want to go in knowing what I am saying is right1

who picked you up in high functioning? I have been picked up on using 'severe' by the neurodiversity crowd but to be honest I totally disagree with them on that point so I use it if it adds something. Otherwise I bypass autism these days and say severe learning disabilities. It's less problematic!

Saintly - Various medical professionals, over the past few months, plus a person at Ippsea who warned me to be careful how I used it as 'high functioning' might be taken to mean 'someone who doesn't need a statement'

Well I can see the IPSEA point - it's a game of politics after all. Not sure why the medical pros would object- it's an accepted term and is used in the literature.

One of them was arguing to me that there was a difference between HFA and someone who 'may' have aspergers, but as I have read it, there is such a fine line that some professionals don't discriminate between HFA and Aspergers, whereas others do. I am probrably getting too hung up on it, but we are at a juncture where we are very nvolved with lots of medical folk and I don't want to come across as a numpty IYSWIM. I think I will probably revert to ASD as that seems safer.

Tell them it will change with DSM V anyway - that'll shut them up. You're right btw.

LOL thanks, Saintly (I did have to google DSM V tho !)

Not just DSM-V either.... NICE guidelines due out a similar timeas well. peopleare assuming ASD will be the term of choice I think,though I know with NICE no decisions are amde yet (or when I last spoke to someomne on the committee).

I agree with MrsT that IPSEA ahve a point, you should never give the LEA any excuses: I learned this between ds1'sstatement and ds3's. DS3's is good and solid,DS1'sshite and we areawaiting a date foran emergency review.

Other than that though WRT to ds3 whose DX is ASD I just say autistic. He is,in fact, but complex (technically HFA but has low functionalability so you wouldn't now it unless you knew him very well IYSWIM). With DS1 I say 'he has spectrum disorder' becuase although he has a (really rather odd) DX of HFA /AS he has atypical issues that make him more needy than average IYSWIM, and it isn't fair on him for people to make provision
based on a picture of a child with AS who really isn't him at all.

Unless they have a specific role WRT your childsdevelopment they have no businessquestioning orasking anyway.

TBH I took a different route with DS. He was also picked up at preschool but I decided that I wouldnt tell anyone because I couldnt tell him. It hasnt been absolutely clear what he has.

Ive simply said to people that he is an very unusual child, sometimes in context a challenging child. I only told a couple of relatives and a very few others - some friends who are medically trained so realised anyway. Also a very few others when I had to for a couple of reasons.

I think most people can see hes 'different' I will start telling people soon as we are getting a DX soon.

Of course I realise many others choose to handle it differently!

It doesdependwhere on the spectrum they are as well Mumfun and whether they have a statement; dsw1's namesAS in his,,and ds3 is clearly disabled.

For children not requirin extra helpand close tothe borderline (and therearemanyof course) disclosure is a complex road.For us,being clearwith ds1 and peersabout his needs is about the only thing that ahs kepthimfrom being expelled and me from being thumped on a few occasions.

Mumfun, we have taken a similar approach to you - DS's ASD DX is very much communicated on a 'need to know' basis. Anyone involved in his education needs to know. When he starts clubs such as Beavers etc (DS is 5.5) then the leaders of such groups will probably need to know. We've chosen to confide in a few people because we needed, ourselves, to be able to talk about the DX with someone other than each other, and to get their support.

Other friends/family members do not need to know at the moment, so we've said nothing in terms of formal DX. Mainly because our DS is so borderline that as BethNoire says it's a bit of a complex situation: he displays none of the 'classic' ASD traits and I see little value, for him most of all, in publicising the situation. What we are honest about are the specific difficulties that apply to DS - so we have always been open about the fact he has OT, for example. In the future, depending on how DS grows and develops, we may of course have to make the DX more public - but we'll cross that bridge when we come to it. At the moment it just doesn't seem necessary.

what a difficult question this is. My son has violent tendancies particularly in public. I hate the "its mothers like you statement". Little one has a case file at Great Ormond street aged 9 which is so large even they don't believe it and so many different doctors claiming so many diagnosis that it now confusing as his Mum. What does ASD really mean, a couple of doctor now tell us he has ASD as a hypothis for intervention any clues.

Along with the social workers the melation which stops working and the daily round of his obessions and our frustration you wonder who and what is what in the middle of it all.

As his parents which actually believe the real issues is that his dyslexia and general medntal health are the real issues. Why do doctors hate being questioned? Isn't it called mothers intitution?

We initially took the 'need to know' approach, but as DS has got older, his odd behaviour and his tendancy to hit out mean that we decided that openness was the best way forward - I'd rather it was known he has a condition than people think he is just out of control/naughty/allowed to get away with murder etc.

But I think it depends on your DC's traits - if they aren't doing physical stuff which marks them out as 'different' then i think a need to know basis is the right way to go and sometimes I wish this was an option for us.

ASD as a hypothesis for intervention- interesting

what I think they mean is that it's a vague basis around which they areplanning their input,something like the centrecircleof amindmap.

ASD wil become increasingly like that aswe know more about geneticASD-like syndromes and things like mitochondrial dysfunctions. If it works it works and if it gets you access tospecialists who canmanage him then fabbo. If it's an excuse tomiss out on the core of what really is happening then different again.

(Tis Peachy btw.I expect you knew that from the typing)