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"??

Thanks for getting back jimjams.
My ds is extremely passive and doesn't yet get
imitation - which we're trying to teach at home. Very tricky though as most of the time it's as if other people(including me) don't exist

ds3's a law unto himself really Socci. The main way I deal with it is by getting extra help in tbh so more hands to go round.

springgreens- how old is your ds? Have you had any help with teaching imitation? There are 2 main approaches really. The son-rise approach would be for you to imitate your son (use a mirror as well). The ABA approach would be to get your son sitting down at a table, get a really strong reinforcer (doesn't matter what it is- just needs to be strong- one of ds1's faves is being hung upside down) say "do this' then do something that you can prompt easily, eg clap, put an object in a box, tap on the table. Wait a few seconds if no response, then take your sons hands and move him through the movement then provide the reinforcer. - you don't need to go overboard, but do provide some sort of well done. Then try again. We started doing that with ds1 aged 5- he quickly (in the first session) learned the correct response, but he needed that physical prompt to learn it. And he could only do it at the table in one room. The difference when it clicked (2 and half years later) was that he would try a movement (eg doing a thumbs up sign) having just seen it without any physical prompting. I don't have any problem doing son-rise style stuff as well, but it was the ABA "do this" approach that worked for him.

yes agree- interestingly Growing Minds (I think - could have this wrong) said they use Son-Rise techniques with children who don't want to interact. Once they do then they switch over to discrete trials.

Oh gosh no. He's always been affectionate and liked being around people. Always loved photos of friends and family etc- just didn't want any direction from anyone (still doesn't really). But that whole video thing was teasing, and I've realised that;s what he does, that is how he interacts with people, when he wants to, and he has different jokes with different people- but that is how he interacts. By 8am yeterday morning he'd got up in the middle of the night, came in and girnned at me, wet his bed on purpose when I put him back to bed (oh ha ha funny joke according to him), then whilst I was having a shower made perfect eye contact and just stood holding a cup over the toilet pretending to drop it in. When he interacts in that way he is very very good, eye contact etc all perfect, but if I tried to engage him in something of my choice it would be completely different. School have taught him to wait, to accept more adult direction, to do what other people want sometimes, but that teasing ability he's developed himself. I think it shows that he wants to interact, wants to be part of our world, but doesn;t have the language or social understanding to manage it.

was going to start a new thread, but this looked appropriate if a little heated!
salt saw ds1 today and she's the first person, including the people who dx him with as, who has seen him who has a lot of experience with asd kids. She said his languuage diffulculties were profound, but easy to miss because his range of echolalic sentences is large. I felt this thread was pertinent because she and i felt that myself and the school had been misled by the as dx as i kept saying to dh 'but this book/site says nothing about language he can't bloody ask me to help him let alone tell me he wants a friend'. The school i think assumed he would be like their other as pupils who keep up academically and require support socially.
i felt very down at the words 'profound'and 'years to correct', but on the positive side at least she's going to reccomend he gets lots of support and talk to her colleague who helped dx him. Just a bit crud that i was going in with a list of optimistic questions about games to help him attempt to speak to other children only to be told that that wasn't really the starting point and learning the concept of single words was!
Anyway just thought i'd add my bit!

Lack of hands on experience by professionals diiagnosing and drawing up programs in the UK is a HUGE problem. It's a disgrace.

I was told by one SALT there was no point working with him "as he isn't interested in anything", told our then private SALT who said "nonsense, what does he like", and made up a picture of a washing machine and some clothes "ds1 put the socks in the washing machine" hey presto it worked.

Oh by the way I got ethical consent yesterday so will be in contact soon Autistic children are often so able in unexpected ways, I'm really looking forward to getting stuck into this project.

Very interesting discussion. DS2 certainly fits the passive type - we can still take him to most places without trouble, he doesn't make a fuss about changes to routine and he'd be quite happy rolling around on his bed or watching videos all day long if we let him. Since starting DTT last September he's become slightly less so - now cries and protests if I switch the video off and will occasionally come and see what someone else is doing. He's always been affectionate but this has increased recently - spontaneous hugs and 'aahs' (lovely at meal times when hands are covered in shepherd's pie). But he's still passive, there's no doubt about that.

I've found that the very high energy approach suggested by Growing Minds during DTT is one way to jolt him out of his passivity - and this might work for your DS Sg - for example using a funny voice, building up the anticipation of a task, and generally acting like a Cbeebies presenter on speed. Embarrassing on video but it seems to work - to cut through the fog somehow.

As far as imitation goes DS2 is weird. He can do the verbal instruction tasks MUCH more easily than the imitation ones. So I can say 'DS, clap hands, blow, kiss, arms up, pat head 'etc etc and he'll do them all. If I say 'DS, do this' and then put my arms up he either won't do it at all or only with a physical prompt. So it's as if his language abilities are ahead of his imitation abilities. We've been working on both for the same amount of time but have hardly moved forward on physical imitation. He can imitate noises though! So what's all that about, do you think?

I haven't had time to read the whole thread - however do you think that what you are describing with your Ds2 Sphil is more like dyspraxia / motor planning problems? My Ds2 can follow verbal instructions more easily than actions also. Thinking about it though the other possibility is that an autistic child just isn't that aware of what other people are doing or how it relates to them. I think that would be the RDI view - that the child has to develop referencing skills (ie realise that what you do can relate to them) before they can start to read your non-verbal signals even if they are blatant signals like clapping your hands or jumping up and down. I think actually that is partly true of Ds2, he often isn't looking at me although he is still talking to me or listening to me.
I think that is why the funny voices / anticipation thing works because it should provoke the child into looking at you to see why you are suddenly turning into a madwoman. That is used a lot in RDI.

sphil- that was like ds1- he could always repsond to "jump" "clap" but couldn't do imitation at all. He used to do animal noises etc as well.

Growing Minds made sense of a lot of things for me. So for years I'd watched children who were far less keen thatn ds1 on interaction (in the sense Socci is talking aboout) than ds1 fly past and overtake him dramatically. Learning about executive function etc at Growing Minds made me understand that it wasn't ds1's core autism as such that's holding him back, it's his ability to respond on demand on time. They've said he has executive function problems, dyspraxia and verbal dyspraxia. I've been saying he has verbal dyspraxia since he was 2 and was told I was fooling myself and he just wasn't interested (by the crappy SALT who should be sacked), so felt justified reading that.

His interaction etc fooled the pros until he was 3 as well- but that's where this problem of them not having enough hands on experiene came in- he wouldn't have fooled people who really understood autism

It's made me undertand why ds1 who seems so together in some ways, and who can be very interactive remains so severely autistic.

Anytime Socci (and sphil ) I'll email you next week (have a deadline for Monday so will do it after that) with information sheets and consent forms and more details.

My dates sound out there-but we didn't meet crappy SALT until ds1 was 3.

I think there's an awful lot in what you say Saker. Growing Minds talk a lot about executive function, which is the whole motor planning thing - they define it as 'the ability to engage in goal related activity and the processes that make it possible'. They list these processes as organisation, impulse control, planning memory, attention, sustaining, shifting (from one activity to another), initiating, emotional control and motor control. DS2 has problems with many of these (and I think your DS2 does too from what you've said?). His difficulties with imitation are partly to do with motor control and shifting but mainly (I feel) to do with attention - as you say, he just isn't referencing other people enough.

Having said that, he has got much more aware of other people since we started the Growing Minds home programme- I would say their approach is ABA done in an RDI-ish sort of way!

Oops - we're obviously posting at the same time JJ! And at this time of the morning too. Haven't even had my bacon sandwich yet. Bet Saker is sensibly still in bed.

bacon sandwich- now there's an idea......

JJ, Socci etc - do you think I should really be pushing imitation with DS2 then? I tend not to because he obviously finds it difficult and dislikes it - so I do it, but move on quickly. He won't do it away from the table at all - whereas he will do some of the other things.

I wouldn't push it if he hates it, but I would keep trying it iyswim. Might be worth trying the son-rise thing of copying him as well. Seems to work with some children.

Sphil, ss you wrote I was busy welding some poached eggs to the egg poacher. Ds2 sitting there hopefully at the table with his toast and his spoon but somehow I managed to boil the thing dry and it all collapsed in a molten heap sending the smoke alarm wild . He got some fried eggs in the end .

I know tha thread has moved on a bit since the op, but as a mum just coming into AS world I can sort of see what mmddww is getting at.

First of all - I had a call from the HV yesterday of the "wait and see how she progresses" variety. She implied that it is just a toddler phase and something she will grow out of. I've lost track, but whoever said about talking to the HV and only really being able to say that there was something "different" about their child was me exactly - I tried to explain what she is like, what my worries are, but it all came out as vague ramblings and me just sounding incompetent.

mmddww's second post rang a bit true for me too. I'm not sure that "resting on my laurels" is quite the way to put it, but yes, I have been thinking that we could poddle along with the hv etc because it seems less debilitating that classic autism . The more I'm reading though the more I'm becoming aware that I'm in denial more than anything. Seeing that my sister "did ok" without a dx hasn't helped, but when I look properly I know she got by, but I think did ok is pushing it, and I want a happier life for my DD.

So yes, whilst this thread has upset some people, its helping make things a little more clear for me, so thank you.