Does anybody struggle to believe their child has Aspergers?

[TheStatueOfLiffey]

A year ago I was told my son had GDDs as well as a severe speech delay. I knew about the speech delay obviously, but I was surprised that he was coming out a whole YEAR behind on other things.

A year has rumbled on and he's seeing an OT now too, who has made much of the fact that he can't jump and gets upset if he gets wet. He's still seeing the speech therapist and is finally beginning to use some words, although they are mostly car, tractor, train type words. Not really the usual, drink, more, up type 'first words'.

A statement is being prepared right now, I should have a copy mid feb, but the OT said to me some time ago 'in my very honest opinion I think we are looking at Asperger syndrome'.

I've answered all the questions as honestly as I can, but sometimes I feel they 'run with an idea' too much. LIke yes, he's interested in door handles and wheels and so on, but he's a little boy. He has had obessions, but he also likes new toys.. Although they also said that his play was impaired. That he has no imaginative play he just examines toys.

Some days I worry and some days I think, wtf? his play is impaired?

He does look me in the eye and he is affectionate although only on his terms. He likes to be with other children but he has no particular friends at his playschool that he goes to twice a week. They could be replaced by an entirely new set of chidren and I think he would hardly notice, but yet, he recognises me, his grandparents, his sister, some of his sister's friends....

What do you think? Am I burying my head in the sand? Or is there a possibility they are jsut wrong?

[cornsilk]

Well the OT won't be the one to make the diagnosis anyway. I was told by the paed that he was absolutely convinced that my ds had aspergers 5 years ago - still no diagnosis!

[TheStatueOfLiffey]

He is 3 and 2 months by the way. So still quite young. But old to only have ten words I know. My gut instinct has always been that it's a severe speech delay and the OT and the SALT say there is more going on than just speech delays. I feel they're preparing me.

Anyway, I guess I will just have to wait 'til mid feb when I get this statement. I hope it is comprehenisble to the lay person!

[cornsilk]

GDD and speech delay are very broad terms so when you do get a clearer assessment it will be more helpful in terms of how to provide for him. If you don't understand what they write on his report get them to explain it to you.

[TotalChaos]

I think it's very hard to say, as the language delay and affect play. There have been quite a few threads on the SN board over the last year discussing how there can be a fine line between ASD and language delay/disorder. FWIW my DS was very much like your DS at that age - a year down the line his language and pretend play had improved, and the offical conclusion was probably not ASD but they couldn't say a definite no (probably because he still had echolalia).

[TheStatueOfLiffey]

If you don't mind my asking, did you agree when the paed told you they thought your son had AS?

Is it that there is a group that just have some of the behaviours but not enough to be diagnosed as having AS, but too many of the behaviours to be confirmed as definitely not having it?

Excuse my terrible English here!!

[cornsilk]

I did and I didn't at the same time. It's hard when you're the parent as you get so used to behaviour that other parents would think was totally out of control!

[belcantwait]

well both my ds are dx with AS and couldnt be more different. i do believe that ds1 is more severe than ds2 and some days i wonder if we havent made a mistake with ds2 but then again some days he is a right bloody pita and i think 'yep no doubt about it'

fwiw ds2's headteacher REFUSES to believe there is anything 'wrong' with him which really gets on my tits tbh as who deals with him more? me or him??

[MarmadukeScarlet]

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.

[TheStatueOfLiffey]

Thanks everybody. marmadukescarlet wheels and doorhandles!? snap!

It seems that there are lots of children who puzzle the experts.

Maybe I will still be waiting for a definite diagnosis in ten yrs time, and meanwhile, he'll have hacked into the Pentagon from the lap top in his attic bedroom...

Sorry to be flippant... I am taking it seriously, but you gorra larf.

[MarmadukeScarlet]

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!

[BitOfFun]

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!

[VampiresWalkin]

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.

[TheStatueOfLiffey]

Thanks BoF... he is gorgeous . Although my friends think he looks like Richard Hammond!!!! (?)

It's true that in the past, before red books and development checks, some children were just left to get on with being different.

Some of my aunts swear blind that their sons didn't speak til they were nearly four (and they are now graduates. Although, maybe a teensy tiny bit em, geeky. But that's not dreadful....!

[cornsilk]

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

[lingle]

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.

[TheStatueOfLiffey]

That's a good point lingle. Although I'm beginning to feel overwhelmed by all the millions of appointments and assessments he's had in the last 18 months or so, they have at least identified that he is a 'visual learner'. He is going to go to a school for children with various SNs in september.

[pagwatch]

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

[Bink]

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.)

[sphil]

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.

[LazyWoman]

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!

[TheFirstLiffey]

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.

[isgrassgreener]

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.

[lingle]

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!

[TheFirstLiffey]

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.

[sphil]

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