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"??

I have AS, i didnt even get it mentioned as a possibilty until i was 18, i got a DX at 22.

My dx prompted a dx of AS for my older brother and a deep suspision that my 55yr old mother also has it.

They never considered that i might be autistic, i was just "weird"... finding out that i have this form of "High Functioning" autism has been a godsend and answered a lot of questions for me.

I do have a job, but i have no academic qualifications above GCSE, i couldnt cope with College, just like i find it difficult to work with adults.

My job is part time and i've had it for two years.. no full time job has lasted longer than 6 months at the outside.. i usually get terminated because of absence because i simply cannot face all the people i work with for 38 hours a week.

Parents of AS kids are fooling themselves if they think its an easier life.. being AS is like being a square peg in a round hole.. we just dont fit in the NT world.. we have to adapt. When someone of my age looks totally normal and Meltsdown in public because of overstimulation and there is no sign that we are autistic people can be very cruel and judgemental

As a child, its relatively easy.. as an adult with AS.. this NT(neurotypical) world is a quagmire of obstacles and politics and emotions that most of us just dont understand.

AS kids need the same help that all autistic children get.. we need to be taught how to survive. I dearly wish i'd been evaluated as a child.

I personally think ALL children should be offered evaluation for autistic spectrum disorders so those like me are caught and not left to struggle through.

Thanks for that Kaishay

Just a quick boast but sam (the AS one) did really well at Rugby today- these unqualified, sportyy types have spent several months quietly teaching several SN kids rugby on a Saturday for no rewards and today sam played properly and got some rules so really chuffed- and I met a 'graduate' of the Unit AHrry's paed wants him to attend: a very clearly ASD boy who has also clearly been taught V well- he seems to know what to do with his hands ina structured way, has learned eye contact, stops himself when obsessing-t hat sort of thing. So much happier about that.

Kaishay, I have a lot of AS traits and could probably geta dx if I wanted, unlike you I find academia OK but I do have some degree of agoraphobia which is relayed to alrge groups of people too. It took me ages to learn how to handle jobs,a nd what I could and couldnn't do. The up side si that's why i spotted it in Sam I think, the down side being loads of years, as you say, being a square peg. I am so determined for that not to happen to Sam!

I think mamadadawahwah started an interesting topic and one not easy to address openly.

I don't have personal experience of autism or AS. I do have a deaf child and I "feel" amongst parents of deaf children that there's also a kind of hierarchy of those whose hearing loss is just moderate, or those who are profoundly deaf, or those who wear only hearing aids vs those who needed a cochlear implant. We are all in this together, but I guess it's human nature to make comparisons, even inappropriate ones, and feel some kind of blessing in what you have compared to others. I don't know, it used to bother me a lot and I only had DH to talk it over with. In deafness, the diagnosis can change (usually for the worst, i.e. lose more hearing, become profoundly deaf, have to ditch the aids for an implant) so this kind of attitude is short-sighted.

Peachyclair its so good Sam has you to help him through.

With the academia.. i did really well up until college, i have 9 GCSE's and was forecast to get 4 A-Levels of B or above.. unfortunately, it seems that the college i chose was one of those where they leave you to work off your own motivation with minimum input.. not a good environment for an aspie to work in.

I needed routine and guidance and constant cajoling, being left to my own devices made it very hard to put my current Aspie obsessions and own agenda's aside in favour of doing coursework/homework which i HATED doing.

This is why a dx would have helped me more than anything.. i'd have had the support instead of my tutors thinking i was lazy and disinterested.

Going back to the second part of this thread - JJ it's true that the Son-Rise approach works better with DS2 for imitation. Just this afternoon he came up to me and said 'Bang' so I said 'Bang' back and then he said it again and bashed himself on the head (not hard!) and this went on back and forward for quite some time.
Socci - I have this week been able to move away from food reinforcers for the first time, so have a greater range now. Will take your advice and save the best ones for the tasks he finds hardest. We do keep the trials very short - he'll sit for 15mins but during that time we do v short trials. Not fast though - he's very slow at processing and it takes a lot of time and energy to get his attention.

Just realised the picture that conjures up - of the two of us sitting on the sofa bashing our heads! And I wrote it with absolutely no idea that there was anything odd about it at all .

I'm finding this discussion about passivity so interesting.

My DS1 was passive as a very young baby - he was the only one of the babies in my post-natal group who could be put down to sleep on his own at six weeks - but that didn't last long and certainly by the time he was 18 months no-one could have described him as passive.

DS3 is much more passive, seems much more easy-going, and is much less prone to meltdowns at the moment, which in the light of this discussion seems to confirm that he's probably much further along the spectrum than DS1.

I absolutely agree with BH. I sought a dx for my son and he got one at three (nearly four). He has Aspergers. He handflaps, he finds it tricky to make friends, is easily led, and can be pedantic and hard to engage in truly reciprocal conversation. HOWEVER, he is a fluent, expressive and eloquent speaker, is academically very able and goes to a mainstream school. I fight for him and work with him every single day of my life. I find the phrase 'resting on my laurels' deeply, deeply offensive. Why are you doing this? Why are you trying to set one set of parents against another? You do sound bitter to me.
I would not dream of pretending my child's disability was of the same magnitude as that of a non-verbal, severely disabled autistic child's. Not because I think I am 'a cut above' but because I think it would be offensive and insulting to those whose children have far greater difficulties. Just as the parent of a child with a bad limp wouldn't claim to have the same experience as the parent of a paraplegic child.

I am in complete agreement with you Aloha.

Very good post, Aloha.

As I said earlier in this thread, I think that AS is a completely different ballgame to HFA. It was really easy to spot early on with my DS1 and DS3 that there was a problem. That just isn't the case with many children who ultimately get an AS dx.

pmsl sphil- we had something similar here. I'm trying to teach ds1 yes and no, so we have a sheet with yes and no wriitten on it. I hold up a pictrue he knows and say "is this a train" etc etc, and then physically prompt him to touch yes or no. Anyway first time we did it and I did "no"he spun around- with a look of comprehension- and then pinched me (!) shouting his version of no (an). So clearly he understood no as "don't do that" but not in any other sense. He doesn't get yes or no at all by they way! I think our yes no attempts sound a bit like your imitation attempts. I keep it really short, don't do it every day, but kind of keep it active. Didn't you say your ds2 did get yes and no. It's really helpful if they do- I would be so overjoyed if we got that!

Cristina - I completely agree about the hierarchy thing wrt deafness. Until I started losing my hearing I had no idea about all the politics involved in whether people used BSL or spoke, whether they had hearing-aids or CI's, or even in whether they had been born deaf or lost their hearing later. I think I probably fit into a kind of no-man's land on the bottom rung of the ladder as I can't sign, I wear HAs, I'm "deafened" rather than deaf, and still have some hearing left. I hadn't realised that there was a similar kind of thing wrt parents of children who are deaf. Yikes!

Hi Coppertop - if you were a child with your type of hearing loss I think your parents would be a little bit smug. I don't know how it operates in an adult world. It's a funny thing how human nature always finds something to be "competitive" about.

(I realise the discussion has moved on from the original post but that was the bit I could relate to directly.)

I have been thinking about this thread today and can only conclude that mmddww had had a very hard day and was upset and fearful. At least I hope that is the case.

this thread is really upsetting.

I am a 34 year old woman with Asperger Syndrome, i wasnt dx,d until i was 33 and only because DS who had been picked up on by the system as having AS when he was 8 was displaying behaviour that i had always thought normal as that is how i had lived my life.

I have never had any help whatsoever from being born up to age 33, i am married with 2 children and i have coped through life myself, i dont see myself or my DS as a "cut above " autism, i see all adults/children with autism and can relate to them.

My son was not picked up early because he didnt really show any major signs, but at the age of 8 he had a mental breakdown and wanted to kill himself, came out of school and has stayed at home with us where he feels secure ever since.

I have fought and am still fighting the LEA/NHS for help and am not "resting on my laurels"

My DD has a provisional dx of HFA/ASD and language delay, im fighting for her as well, mmddww i realise that you didnt intend to deliberately cause offence with the thread title but im afraid it is offensive to me.

The sentence

If a child with aspergers was taken seriously at the age of 2, just think of the amazing progress they could potentially make if accorded those services equally. Further, my "learning curve" from when my boy was 2 (who is now almost 4) has skyrocketed because I know what he needs, read all the literature and researched my tail off. I was keenly aware of the "urgency" of early intervention. For a parent who has a 2 year old child who is developing aspergers, are parents instilled with the same sense of "urgency" by the doctors/schools? Are their real and valid fears poo pooed by these people? In general they are often told by the doctors, etc that their worries are unfounded, the child may "grow out of it", the child is precocious, etc etc

Im glad that you have been able to have an early dx for your son and that you sound a loving and caring mum who will do anything for her son, but so am i, but my son has been dx,d later, so ive got catching up to do, i wasnt dx,d until 33 and ive got major catching up to do as well, but i will ensure that myself and both my kids get the best treatment that they can get and will hammer on anyones door that has the access to it.

JJ - DS2 only gets yes and no in terms of things he wants, as Socci says, and even that's a bit dodgy. He'll only say yes if I ask him if he wants something that I KNOW he wants, iyswim. And even then I have to prompt him with the sign. He's much more likely to say 'nana' if I ask him if he wants a banana, for example. He does 'no' unprompted but only if very upset about something and won't say it in answer to a question.

We are struggling atm with choice. For example, he has two Rosie and Jim videos. He can ask for 'Ro-n-Jim' but if I show him both videos and say 'which one?' or 'this one, or this one?' he pushes away the one he wants! I'm dealing with it atm by showing him the one he wants (when I've finally established which one it is) and saying very definitely 'DS2 wants THIS one'. He then repeats 'this one'. Any ideas?

Sorry Jenk - it seems as if I'm ignoring your post but there seem to be two threads in one here - one about AS and one about passive children. I completely understand how you could be upset by the OP. Perhaps we should start a new passive children one?

no problem sphil, i dont feel like you are ignoring me, ive been reading all the info posted on passive children and its very interesting.

(jenk other thread was deleted)

Just to throw my tuppence in, i agree with BH and Jenk that MMDDWW's post was worded very badly - i read it last night and was shocked, but too tired to get my thoughts into any sort of order to reply without being very negative.

I certainly do not see my ds as a "cut above" in any sense - I think i can see what you are trying to say but it is worded offensively IMO.

As others have pointed out, we as parents have a hard enough time dealing with our children's - and our own - SN, we don't need to bring about bad feeling amongst each other. After all, the first line of MN's philosopy states "The idea of Mumsnet is that by pooling knowledge and experience, parents make each other's lives easier."

I've had my say and i will go away now.

Hi Choc ~ how are you? Haven't seen you about in ages.

This thread is pathetic, sums it up really.

My final word on the subject. It is called the autistic spectrum for a reason!

Hi Bloss - i'm fine thanks, how are you? I've been lurking a bit but too knackered these days to post sometimes.

Autistic spectrum - well said!

sphil/socci- is "do you want" a semantically different yes/no than a "is this a". I wonder. Sphil- you should know!! (thinking of your degree ) He definitely understands "no" as in don't do that. Can see why its difficult when you begin to see how many meanings it has.

Impossible to do anything like that with him today, he was all over the place like a madman.

Oh bl*y hell, I don't know. That was a different life .

Grinding my brain into gear though, I don't think it is - both are requesting an answer to a question that has two alternatives. I do think 'Is this a...' is much harder than 'Do you want...' though - just because it's much more difficult to work out why the question is being asked. I can imagine our children thinking 'Why the hell is she asking that? She knows full well it's a ......' .