Does anybody struggle to believe their child has Aspergers?

TheStatueOfLiffey - your DS sounds quite like 2 of my brothers. They are in their late 20s now and they both got an Aspergers diagnosis (although not til they were in their late teens, because things were different back then). Anyway at 3.0, they each had just one word. Try not to worry about the diagnosis - if they diagnose Aspergers, it will mean that he will be able to get help. My brothers were not able to get help when they were young and they were picked on at school "bit wierd" etc. Anyway, reason I am telling you this is that knowing they have (it sounds like quite mild) Aspergers - as they grow up, they can learn behaviour that would come naturally to people who don't have Aspergers. Now, one of them is a (very good and very respected) teacher - nobody knows about this diagnosis apart from our immediate family and he has learnt behaviour enabling him to be considered "normal" by his colleagues and people that he meets. If you are doubting the diagnosis, it coudl mean that it is mild or it could mean that he doesn't have aspergers. Either way, you have the situation under control and can help him, so he will be fine! My other brother is in a professional job and just considered a bit eccentric by colleagues - again, nobody is aware of the diagnosis.

Wow - that is such an interesting thread. I am just at the very early phases of all this (3.5 year old - speech disorder for a while, but therapists seem to be hinting of wider issues "ooh - he likes things that go round, does he?" "very distractible, isn't he?" etc) and I too oscillate between intense concern esp as to whether I need to be looking towards non-mainstream schooling, to thinking that he is just a little quirky and is so happy and jolly that there surely can't be much wrong.

Does anyone know if there is a guide to all the acronyms (ASD, GDD etc)?

My ds1 (pfb to the extreme) was born after a v traumatic birth

He didnt speak til he was 4!!
he saw a S.T,I repeatedly told my gp i was worried he used to line his toys up just so and hated hated to get wet or dirty.....

At 4 he went to nursery....he spoke
hes tidy by nature
he hated to be dirty cos i hated it hes still at 15 a 'cleanteen' his footy nicknme is squeaky cos his boots are spotless....

Hes very vocal, popular and 'normal'and off to college to study 4 a levels in sept.

What is,is.
Dont worry and dont waste these days worrying over shit you cant stop.

my son has autism which on same spectrum as asperges and reading what i jst did in ur post was like readin about him i think sumtimes we wear blinkers i did for a while but you do relise and get on with what u have to to help ur children good luck xxxx

Yeah Liffey - these benefits do seem as if they've been randomly allocated sometimes!
Anyway, keep going and don't forget to just have fun as well

Bye for now...

Thanks lazy, I have a big accordian file!

I;m in Ireland and I have a carer allowance of 280 euro a month, didn't think i would get it. I think the women who are in charge of deciding who gets the allowance liked the cut of my gate and knew I was a single mother. I feel lucky to have that allowance.

Liffey - thanks for your comments - I would love to be lazy if I only had the time

Regarding all the appointments, just keep going & keep all the papers nicely filed! They build up to quite a pile over the years.

Don't be too discouraged if any of your son's test results seem to be really low - they could be quite different next time round.

Also, the best advice I can give you is just learn to concentrate on a few issues at a time and shelve the rest for the moment.

Have you heard of Cerebra? Are you claiming DLA?

www.cerebra.org.uk

They have an extensive free lending library, including software and sensory equipment. Also now have a purpose built & adapted holiday home for disabled children & their families (no charge for the week's stay but your application has to be approved first). In addition, they will provide help with things such as claiming for Disability Living Allowance etc. Well worth joining (free).

Bye for now

Ooh, yes - can I take that one too . That's two good phrases from this thread now - that one and 'a moving target'.

Isgrassgreener, quirky, that is exactly how I view my son. He has his little quirks, and I am used to them, and they're a little challenging at times, but I'm a mum of two children, not a teacher of 30 children, so most of the time I find myself thinking 'why are you making such a big deal of his quirks?'

I would do the same as you, use the dx when it will smooth a path for him, and otherwise, not mention it. Lingle, I like that! take charge of the label. I like that idea.

Someone in another thread told me to "take charge" of the labels. isgrassgreener sounds like that applies to you too.

The fact that the diagnostic criteria are often illogical helps!

Very interesting question, in my experience my DS has changed so much that I am beginning to think of him differently.
He was DX with ASD at 5 and at that time he had lots of issues and school was a real nightmare. He was given a statement and managed to stay at his mainstream school. Since then things have got better and better, now I tend to think of him as aspergers and although he is rather quirky, he fits in very well. He is 8 now.
I have always been really upfront and open about his DX with others, although we have not told him yet, as he has never questioned or asked.
I am beginning to wonder if we will tell him or not, I'm just not sure, but the older he gets the less I feel he needs to have a label.
We had to fight really hard to get the support he needed when he was younger and so at that point the DX was vital, it also really helped me understand him and his behaviour, but I don't know if he needs to be "seen as aspergers" all of the time, as often he does not stand out in the class.
Maybe this is wrong, but I find that I use his DX when it is benificial to him, but more and more I feel like I don't want him to be defined by his ASD.

Lazywoman, despite your screen name, you sound like you have worked so hard for your children, I hope I have the same in me.

Already feeling overwhelmed, just by all the millionsof appts.

I completely agree with sphil here about concentrating on the "child's specific neurological problems rather than the label, which is only useful as far as it gets you services." Our ASD children are all so different with specific strengths and weaknesses.

My DD was originally diagnosed Aspergers, then ASD. My DS was first diagnosed with Language Disorder, then ASD. I homeschooled them for about 8 years but maintained their Statements, as I expected they would go back to school at some stage. DD is now 14, & full-time in mainstream school with help. DS at 13 is now in the same school, part-time, with help, building up to full time.

It was a definite advantage when they went back to school that they already had a Statement even though it had to be updated, so the labels were helpful in that sense. Otherwise, I've never used the labels and they themselves don't know they are autistic.

I tend to tell people, if necessary, they have some "language difficulties". Of course, this is probably only appropriate if your children are fairly "high-functioning" (another label!) And both my kids definitely started off as "low-functioning" if you take account of the early Ed Psych reports.

It just comes back to focusing purely on your child's specific difficulties and fighting for the appropriate resources to deal with them. Good luck with everything!

I agree, Lingle. DS2 is described as having 'severe autism' but he sounds very much like Pagwatch's DS. I've just started thinking of him as being mildly/moderately autistic but with severe learning difficulties - it just seems to describe him better. And in fact I've started saying 'SLD' to people when they ask, instead of 'ASD'.His home programme supervisors (Growing Minds in the US) are very much of the opinion that the important thing is to look at the child's specific neurological problems rather than the label, which is only useful as far as it gets you services.

DS1 is like Bink's DS - features of the mild end of the spectrum and also a 'moving target'(a description I will steal). No diagnosis because he hasn't needed it up to now - but if he does, we'll pursue it.

lingle, well put.

I'd add that another approach to the "is he/isn't he" (or as I think it, "now you see it, now you don't") circling thoughts is to see if it is helpful to treat your child, and have others treat him or her, as if he/she has whatever condition is being considered.

So, for instance: if a feature of the (mild end of the) autistic spectrum is not being able to generalise from one social situation to another, and needing to learn expressly how to behave in different circumstances - then, whether or not your child has the confirmed diagnosis, you do the step-by-step teaching. That's how we deal with ds, who's never had a diagnosis, but absolutely definitely displays difficulties in exactly the relevant areas.

(Ds's lack of diagnosis is partly because he doesn't have difficulties in enough areas, but more because he's (and I quote) a "moving target" - as he gets older, he seems to improve his ability to overcome his own difficulties, and that insight and developing self-help ability are thought (by some) to be sort of inherently inconsistent with being on the spectrum. But who knows? And in the meantime, I treat him as if.)

MY DS2 has very severe autism but even for him the diagnosis is fluffy around the edges. He makes excellent eye contact, is funny, can understand teasing and yet has very little speech and limited yet severe obsessions.

TBH I don't really care about diagnosis any more except when it allows me to gain additional support for him.

I have to say I think that it is quite common for children to have some classic symptoms and some areas wherethey are perfectly NT.

But then DS2 is severely regressive ASD flollowing vaccination and i think he has biological/biochemical symptoms that are so all to do with ASD and more to do with his gut problems and intolerances etc.

But then I am a weirdo lentil weaver

I've spent an awful long time on the "language or ASD?" threads.

I've got to the point now of thinking that my aim is to get beyond the "language or ASD" question to the really important question which is "does he need extra help and is he getting it?"

This seems to work well provided that (a) I remember to respect the opinions of mums for whom obtaining a "label" has been a lifesaver - this is usually mums who had previously blamed themselves or been blamed for difficult behaviour and (b)I keep a wary eye out for any help that might be useful but requires your little one to have the label tied round his neck as it were.

Einstein was a late speaker apparently. He was meant to fit the profile for aspergers.

I have no dx, I don't know for sure either way with DD (very borderline/mild/pick your term), but I know I flick daily from her having any SN to being sure about AS.

I think it is only natural.

Hey Liffey! (Sent your thingummy off yesterday if it's you btw!) I have to say it does sound Aspergers to me, but others here will know more (my youngest has more classic-type autism), but all I would add is don't worry too much. If anything a diagnosis will help you access more help and support, and it will in no way detract from him being a smart gorgeous little boy. I do think that in the past before we became more aware of aspies we just rubbed along with people's odd little ways, and we still can. He is just likely to do better in school with extra focussed support is all really. As I say, I'm not an expert at all, just some experience through friends' kids mainly, as my dd is a whole challenging bag of monkeys all to herself , but I do remember the worry and stress around wondering if something was "wrong", and I just wanted to offer you an MN squeeze on the shoulder!

Hasn't grown out of the wheels one, but much less into door/handles - was convinced he was going to lose his fingers at some point due to repetitive opening/shutting!

Hi Liffey,

My tuppence here...

My son was dx'd with GDD from and early age, I was told many things inc he would have the development of a 10 yr old when he was 20 etc. Although the Paed was adamant when he was 3 that he did not have ASD. "I can't tell you what he does have, but it's not that" when I asked him directly duue to DS' obsession whith wheels and doors/handles.

We are fighting our statement and because of this have paid to have some very in depth Ed Psych et all tests done. He is 4.5 and should be in reception, although has not started shcool due to farcical Statement.

The 4 specialists we saw, and now our NHS SALT agrees, that actually he doesn't have GDD he has a very unusual and complex speech and language disorder - expressive better than receptive which is unusaul and word retreival problems. It wasn't that he couldn't do the griffths tasks but he didn't understand what he was being asked to do.

Your DS is only young I'm sure there will be many suggestions as he changes and develops. The 3 boys I know that have Aspergers 1 I didn't know until he was 5, the other - well it couldn't have been more obvious and the 3rd is a fairly classic case also.