Are parents of children with aspergers children fooling themselves?

[mamadadawahwah]

So often i come across parents of children with aspergers with an "attitude" about autism, that their children are autistic, but that they "aspergers" children, a "cut above"?? autism??

Lets see we have low functioning autism, autism, aspergers, high functioning autism, PDDNOS, etc etc. I have spoken to parents who seem to think their children have a better future than mine who has "autism" because their children have aspergers.

As aspergers is often as debilitating as any where else on the spectrum i dont understand this logic, except that maybe some parents are fooling themselves that their children are less "dis-abled" because they have aspergers.

at the end of it all, if this belief transpires into not getting all possible help for the child, it can be very damaging. Maybe part of the reason a lot of children dont get help until they are teenagers is due to this notion? that they dont need the help, that they are only "socially compromised"??

Just a quick question for Jimjams

why is it that 'easy going passivity' is a sign of children being at the severe end of the spectrum? Could you tell me what you know on this?
Thanks for your time ... sorry, not related to this thread directly.

Cheers, sg

I think wiith AS you're eyes are set on the mainstream, so you do have one foot in each camp PC- basically you have to aim for independent living as an adult- well for all sorts of reasons- only one being lack of services for adults with AS.

I suspect you'll find ds3 changes as he grows, ds1 was very passive as a baby/toddler/pre-schooler and oh so easy, but that becomes a real problem when you need them to engage (eg at school) and then when they do you wish they'd be passive again

IN ds1's case mainstream, real life is a complete irrelevance. I never feel guilty about needing services because ds1 can't function at all without them, and I know that at some stage he will have to be provided with 24 hour care, so I never have to justify anything. I do know what you mean. Going from mainstream where ds1 was always normalised- the IEP goals were NT kids goals, to special where the whole need to be normal was removed (especially in an SLD/PMLD school) was such a relief. Suddenly we were in a world that was meaningful to ds1, and the sort of environment where he'll probably spend the rest of his life. Everything began to fit together. At mainstream, never, so I do know what you mean.

springgreens- just my personal view really, from observing the kids that I know etc. I'm talking VERY passive though. I think often the children who are very passive are very unaware of what others are doing- and I think that often passivity means an inability to imitate (and therefore you don't get the copying, so they passively sit and do their own thing). Speech in particular won't rerally develop if you can't imitate.

I'm not sure the converse is true- I know some wild ones who are severe

DS1 is no longer passive, but that's come with increasing understanding. Some children in his class are still very passive, but they are also more severely autistic (seems a bit daft categorising severe autism, after all the end result is the same- it's just interesting for me to see children who at 7 are still like ds1 was at 2 or 3 in terms of passiviity and I can see then how much his development has come on, even though he's still severe- and far harder to handle). When we were unsure about ds3's development (and he did sail close to the wind) we were also pretty certain that if he was autistic he would be higher functioning than ds1- because he could imitate. Imitation is a very key skill, ds1 has come on leapps and bounds since finally working it out- finally he's teachable (rather than just promptable).

The resource at the junior school I work at was originally designated as for children with AS, but for some time now that's been changed to ASD because they are increasingly coming to think Asperger's is not a helpful term - partly at least because of the attitude that it necessarily indicates above average intelligence. But I have never actually met a parent with this attitude - it largely seems to be the media responsible for it (and possibly some -not all- of the professionals in the various associated fields)

springgreens- had a brief look at the literature - and it appears that prognosis is very difficult to predict (as Socci said). Indicators that would suggest a poor outcome (ie a high level of dependability and severe autism) are a high degree of language abnormality, not having developed useful speech by age 5 to 6, and being untestable for the purposes of IQ assessment.

I wonder if passivity is related to imitation ability (and therefore speech development) am off to browse.

oh hang on found htis- "and particularly in the young and the most impared individuals may have relatively little interest in social interaction". I guess that's what I mean by passivity. DS1 was alsways very affectionate, but he was never interested in what anyone else was doing, was happy to sit sorting piles of balls into different colours. As he lost his passivity he became more interested in what was going on around him, but also more opinionated about waht he wanted.

I can see the passive side slowly disappearing now JimJams- sometimes. He does like his own way when it matters LOL! Which can be a larf with ds1 when they each want different

There does seem to be some expectation amongst the schools etc that I'll put Sam's needs ahead of Harry's- things like they both start new schools in September theoretically (Oh aye? MAKE ME!!) and I'm expected to forget Sam needing to be settled into Junior school. As if. Should Harry have to go to the unit this year, he's starting Chrsitmas (late July baby, i can insist).

DS3 is communicating a bit more, actually. He's also screeching a lot more, and obsessing a lot more (constant chant of 'ee-eed' which means DVD). PAed wants him on pecs or signing ASAP. And for the HV who refused a referral when he was 18 months to get a big telling off. Cow.

Dh is convinced they're wrong about DS3. I think he has potential- but I can see that achild who blanks out for five minutes totally as a result of 5 monutes interaction needs lots of support.

Can't find any info on the Brynglas asd unit either- zilch. Hardly inspires confidence.

Harrys needs ahead of sams- oops

found another paper saying that imitation and social functioning are related and that early imitation skills are a good predictor orf outcomes in langauge, IQ and social skills.

Passivity/imitation ability etc might be unrelated but I have a feeling it would be interesting to look and see (although very hard to measure "marked passivity" as the literature refers to it).

If I had my time again wiith a 17 month old ds1, I would just work on imitation, imitation, imitation.

How's his imiation Peachyclair? Check that- if he can't just go straight onto PECS, forget Makaton until he can. We couldn';t be assigned a PECS trained SALT, so we spent 18 months trying to teach signing to a child who coouldn't imitate (and no-o0ne suggested 2 person prompting which can kid of work). I do kind of laugh when people say that its easier to access services with a severe child, because I haven't found that at all (until ds1 went to special school), before then we had therapists who weren't trained in PECS (which he needed), who we never saw, and long long waiting lists. Then we had ds2 who was dxed with a speech disorder privately- and we still had to wait for a year to have a first assessment on the NHS. He was 3 byt the time he was seen- despite everyone knowing he was at high risk of various disorders.

jj ~ finding this really interesting as my dd was completely the opposite. Really hard work and demanding. Wanted to be carried all the time. Cried and scream 24/7.

It's postcode lottery though isn't it. my current LEA is reaosnably good at supporting children with sever/moderate ASD- because it has dedicated special schools- you just need to fight your way in, then you're fine- hopeless with HFA. I am so pleased we moved from our previous borough though as it sounds as if they have no suitable provision for ds1 at all.

well that's what ds3 was/is like BH, And when we talked about whether he was on the spectrum we thought he might be but both agreed he was higher functioning. For starters he had demands- that's a sign of some intelligence, and he was able to let us know what he wanted.

DS1's remaining passivity still makes things hard at times. We were trying too do some work with him today. he was quite interested in spannering it, sitting on my lap etc. Usually I could get the strongest reinforcer- wave it at him say "x first then this", today there was nothing he wanted enough. He doens't particularly dislike anything either. IN fact his favourite thing in the world is doing something he's not allowed to (or pretending to) as its one way he gets to interact, in a predictable and to him funny way. His language is still so limited it's difficult for him to do anyting freeform .

There's no SN salt here at all, they cannot recruit one atm. So he's seeing the Head of Services as an emergency referral (again.... just to scare us).

His imitation is unreliable, I would say, there's this silly dance we have to do with a drink which he can do (VERY simple), but I tried to get him doing please (nursery got funny about that LOL) and got nowhere, he just didn't seem to notice.

Paed was up for Pec's, so will have to see waht happens I guess. She's very angry at what she calls the loss of 3 years teaching and support.

When ds1 was 2 we could go anywhere with him. We went to our old college reunion and he had lunch. He was so passive you culd just sit him down and there he'd stay watching. Now if we tried that he couldn't sit down, strange hall, too many things to look at, too many doors to open and shut, with very little reaosning ability, and very little language and zero understanding of soocial conventions he would have to be held down (and would scream the place down).he went from beiing so much easier than an NT toddler (because of his severe autism) to being so much more difficult than an NT child (becuase of his severe autism). It was a rollercoaster few years. Now I know where we are, and expectations are realistic, life's a bit less up and down.

Weird. I used to take him round the supermarket and he had all the grannies coming up to him to say hello, and comment on how well behaved he was. Now I only take him with 2 adults, no other children and to "practice" ie wouldn't try and do a shop with him.

I remember talking a train from London to Glasgow when he was 2 and an old lady commented on how well behaved he was- never seen such a well behaved child. We wouldn't even attempt such a trip now. We couldn't. Most kids world broaden as they get older, his has completely narrowed. Sad really.

When you test imitation don't tell him what to do- just do it and see if he copies. You can teach "do this" as a command.

Drink is interesting. To teach ds1 to use a cup I had to stand behind him, putting both hands on the cup then tipping it to his mouth, after about a week of that he got it, and learned to drink from a cup. I didn't realise it was because he couldn't imitate- so he literally had to be walked through everything he was taught. He couldn't learn by watching or listening at all, had no idea it realted to him (until last November- and whoosh he's learning by watching at last).

Have to say jj I can see what you mean about imitation as ss has always been able to.
You mean things like copying gestures, nodding heads that kind of thing?

He does imitate, but it xcan take a year to get him to do something that the boys (including Sam) picked up in a day or less. And that's when he's responsive, he doesn't always respong to his name let alone react if we interact with him.

At least there's a specific ASD unit, I guess. They'll know more. And there's an MA in ASD at the Uni, which I might do in the future (PGCE looking a bit unlikely at the mo - 8 - 6 working? Yeah right). And the lecturer has offered to talk to me (actually she offered in the summer, time just vansihes )

Anything and everything BH. Imitation is the way children learn. If you can't imitate you have no idea that what everyone else is doing around you even relates to you. I remember ds2 aged about 6 months picking up a beaker and trying to drink from it, I was staggered I had no idea children did that. Until last November if I said to ds1 'look like this" and showed him something (I don't know puttiing a puzzle piece somewhere, where to open a box, how to put a key into a lock) he couldn't then copy that. I would have had to hold his hands and moved them through the motion. In November it clicked, and he is just starting verbal imitation now. Who knows maybe he will learn to speak some words.

He was funny when he started learning to imitate sticking his tongue out, he used to feel it, until I grabbed a mirror one day so he could see it.

Socci do you think your dd is less passive now?

So true. It makes such a difference.

Oh she does sound like ds1 still. He can be wild out and about but also still qutie passive. DS3 for example (half his height) can shove him off my lap, or grab something off him. He sometimes tries to hold onto stuff, but ds3 usually wins any altercation. I suppose he does at least try now, he never used to.