To think that this boy does not have a disability?

[Upwind]

www.guardian.co.uk/lifeandstyle/2009/jul/04/autism-asperger-s-education-society

I don't doubt he would, and did, benefit from special adjustments being made and an individual timetable. But so would most children. It is a shame that "a label", in this case an Asperger's diagnosis is necessary to get that.

I can't help but wonder whether changing schools so often, and allowing him to work on novels all night and sleep all day, has contributed to Alex's social isolation. I really hope that he can come into his own and thrive at Cambridge.

The boy himself seems to agree with me: "I don't think I've got a disability. I like being me." The diagnosis of Asperger's felt, he says, "like a label. I felt like a jam jar."

[saintlydamemrsturnip]

katiestar When ds1 was 2 years old we went to see a dietician. At the time I was seeking an autism diagnosis - not from her but she knew. At the end of the (useless) consultation I told ds1 to pick up the toys and he did. "WHO thinks this child is autistic?" she barked staring straight at me and followed up with a 'harumph'.

Well I did. And I was right. Aged 10 he has one word (Mummy), has very limited understanding (nouns and he guesses the rest) and severe learning disabilities (despite knowing his alphabet aged 2 and being able to read some words then- that's the thing about autism). His behaviour is extremely challenging and he will require 24 hour care for the rest of his life. He will never set foot in the street alone because he will never be able to understand road safety.

No doubt the dietician he saw aged 2 thought the same way as you, she got pretty pissed off with me when I said her suggestions for ds1 (which were sticker charts- he doesn't understand them now let alone then) wouldn't work, but well she was somewhere beyond ignorant, as I'm afraid you are. If you want to find out about the autism spectrum there is a lot of very easily accessible information out there.

[wrinklytum]

YABVU

[LazyWoman]

Qally - that was a great post

[pagwatch]

Total
I think the book is great and i suspect it feels spot on for a lot of aspies. I too felt that Rainman was great and covered many ASD traits beautifully.

My point was simply that the world at large will now,too often, regard these two fictions as the entire, definitive experience of living with those conditions. That makes having traits outside those all the harder.

Not sure that makes sense but tried my best

[sunfleurs]

Obviously this is the case for all children but in children on the spectrum their behaviours are much more extreme and obvious and therefore available for judgement from onlookers, leading to threads like this.

Personally I feel the majority of negative behaviours of children on the spectrum need to be managed rather than disciplined because most of the time you can never know what triggered it. My ds will meltdown if he is hit at school (by another child obviously), feels unfairly treated, or is feeling unwell because he does not have the emotional language to describe how he is feeling and express his sadness and anger. Anywhere between ten minutes of 2 hours later he will often have a meltdown doing something totally unrelated. He can't help it so I won't "discipline" him for that, just help him calm down and find out what caused it and if people think that makes me a weak parent then you are certainly entitled to your opinons.

[sunfleurs]

"i find a lot of parents use this as an exscuse to not disapline there children."

In my experience what will work for one child on the spectrum will not automatically work for another. There are just too many differences in each child. So I am afraid I cannot agree with that. It is impossible to know what triggers each individual child into a meltdown, only the parent and trusted carers can know what is "bad behaviour" in their autistic or aspergic child IMHO.

[cannydoit]

my daughter is autistic on the autistic spectrum if u like ,as is aspergeus syndrom. i find a lot of parents use this as an exscuse to not disapline there children. my daughter is well behaved because she has been taught to be threw long suffering hours of tantrums and meltdowns. the fact that this boy reacted better to u than the people trying to be nicey nicey about his bad behaviour does not surprise me. aspergus symdrome is not as "bad" as full on autism and there is not a reason that the children can not be better behaved than alot of other children.thats just my experience and opinion no the matter.

[nooka]

Spot on Qally. My dh is deaf in one ear, and it causes all sorts of issues for him, which as you say are mostly social in nature, and because he doesn't appear to be deaf (most of the time he can hear just fine, just if you are his wrong side and there is lots of background noise then he really doesn't pick up that you are talking to him) people don't realise that there is a problem.

[TotalChaos]

yes, great post qally.

[screamingabdab]

Qally good post

[lowenergylightbulb]

Of course he has a bloody disability. I salute him and his mother and hope he thrives at cambridge.

[Qally]

If your point is that one of the major problems he faces is people's attitudes and inabilities to accept difference, I agree. Unfortunately we live in a world where such differences are not accepted, and a kid such as Alex, who is very different, gets beaten up, ostracised, and retreats into his own room as a place of safety. And - even if we did live in a world in which people didn't make crass and judgemental assessments based on zilch knowledge, he might well still find a lot of situations inordinately stressful, because the world is run on unspoken social rules and cues that most of us learn by osmosis, and people with Aspergers are in my experience more or less blind to. You could be an intelligent, kind, decent kid, as this one sounds, and be surrounded by other equally decent kids, and still find them completely confusing and bewildering and overwhelming as a group. And yes, I'd call that a disability, personally. I'd call being a five year old who, when told to get undressed for PE and then go to the hall, strips off, goes in naked, and finds everyone's laughing at him and he's in serious trouble disablingly stressful. And the sheer confusion of living in a world where everyone else speaks some sort of telepathic language you just don't share would be hard and bewildering and exhausting, especially when a lot of the things you find necessary or reasonable or unavoidable (watching the TV sound card; waking your sibling at 5 am because you don't appreciate the need to sleep more, aren't tired, and are climbing the walls with boredom) get you yelled at. And it's a life sentence, because even with professional help with social skills, you'll never be fluent and it'll never come instinctively.

Diabilities can be obvious to outside observers - my brother is progressively deafer as he ages, and the hearing is undeniably a "disability" to most hearing people. But you know, many in the deaf community regard it as different but equal; they regard sign language as a skill that hearing people lack. They pity our failure to comprehend the beauty of signed poetry, or to join in conversations in deaf-frequented pubs. My brother is actually not regarded as deaf by that community as he has some hearing - but he's regarded as deaf by the hearing community. tbh I think that failure to be able to identify as one or the other is in some ways harder than the disability itself. And deafness is never as hard for him as the Aspergers, because people understand, accept and work round his hearing. They are far hastier in assuming that his social difficulties are down to being boorish, or rude, or self-absorbed - and he isn't, actually, any of those things. He is inordinately kind on a practical level, he longs for the sort of easy social connections many of us take for granted, and he most of all wants a wife and kids, which are probably not going to happen for him, though (very belated) social skills assistance and the general increase in tolerance people seem to achieve in their late thirties does mean he is now tentatively acquiring some friends outside the family. You'd probably just see him as a socially awkward deaf person, who lives independently, more or less, and holds down a decent job. But that is to underestimate the huge additional effort every single social interaction exacts, and the constant extra vigilance required just to try to behave in a way that isn't seen as odd, or inappropriate, for reasons that are actually, when you break it down, pretty silly. It's to ignore that he works in IT, in the public sector, in a job that involves travelling to sites to sort out their IT, and not day-to-day office politics, because any other kind of job would pose enormous problems for him - and it's to ignore that he has been seriously discriminated against at work, too. (Told not to apply for a job because he was overqualified, despite that job being substantially better paid. Told not to apply for another as it was beyond his skill-set, then instructed to train the successful candidate. Pretty blatant, I'd say, and his most recent boss got him a several thousand pound raise after arriving and realising he was grossly exploited - and that in the supposedly transparent public sector.) That is a disability, and the fact that so many people manage to live rewarding and worthwhile lives is a testament to them as people, I think, rather than there being no disability involved.

[ericcantonasbitontheside]

I have told my DS(9) he has AS

BUT have also explained that telling other people would be a waste of time, as most people are not as smart as him

I had wondered if that approach may be wrong

this thread has convinced me it was the right thing to do

I cant believe how ignorant people still are about AS, a quick google search will show just how real it is

I suppose it makes other parents feel superior and that they are doing a better job

Makes me feel sick actually

[Greensleeves]

I haven't told ds1 he's got Aspergers yet

I haven't found he right time or the right form of words

but parts of this thread provide a much-needed reminder of the sort of pig ignorant crap he is going to face as he gets older, so I suppose I had better broach it fairly soon

thanks a fucking bunch for that katiestar

[LucyMinter]

Thankyou TC, that's good to know.

[TotalChaos]

LucyMinter - sometimes by a paediatrician with some sort of specialism in child development, more often after being seen by a multidisciplinary team (so educational psychologist, speech therapist and paed). Some professionals do use detailed computer based questionnaires as part of the diagnostic process (disco I think the questionnaire is caused).

Madwoman thanks for the post up there clarifying things - yes I agree that the article would have been better for some info on what parents in a similar position should do.

[LucyMinter]

How is an Aspergers child diagnosed? I took the AQ online for myself but am wondering if there is a similar thing for children.

[nooka]

I've been thinking about this a bit. My dn has a very nasty form of epilepsy that has associated LDs with a very Aspie sort of effect. I found him a very difficult toddler, and now at 18 he is decidedly odd. The diagnosis really helped those of us who don't know him on a day to day basis to understand how thinks and why he reacts in the way he does. It makes him frankly less scary and more predictable, and it is so much easier to relax with him, and therefore be much nicer. Of course that makes his life easier, and I hope his mum and dad's lives easier too.

My ds has some "interesting" quirks, and his last teacher in the UK wanted to have him assessed by a ed phyc because she wasn't sure if telling him off actually helped, or if perhaps there were better ways to manage his behaviour. I guess for me that is the fundamental point of a diagnosis, to understand the differences, and make adaptations not because they make the child's life easier necessarily, but because they work.

[PeachyTheRiverParrettHarlot]

SD12 has newver been r Average Aspie it'strue- he obviously is, but there's a lot of other stuff mixed in that we haven't yet got to the bottom of. I suspect he ahs some of DH's depressive tendencies as well as the Aspie / HFA stuff (ds1 has a dual dx), visual problems (needs very strong glasses and destroys them so doesnt ever hae any) and he has a few SPLD things- all separate issues but they combine to make the pre-teen a little biyt unique IYSWIM

[sunfleurs]

That is an amazing book, I have given it to a few people now for them to try to "get" ds. Cried my eyes out the first time I read it because it was just so ds. He is diagnosed HFA because he had speech delay but he has very aspergic behaviours.

[TotalChaos]

last time (admittedly a while back) I looked on the aspies for freedom site, they seemed to rather like Curious Incident, felt it was a good depiction. Fluffy - I do hope that your DS's next school is a happier experience for him, he's had a rotten time.

[FluffyBunnyGoneBad]

Ds doesn't get why people are mean/kill each other/are friends with him one day and not the next. There's alot of times I just can't answer. He's the sort of child that likes everyone and will forgive someone if they have hurt him (as long as they don't do it again). He just doesn't get why people behave the way they do, why they purposly want to upset or hurt someone.

PE/lunch/trips away from school are hard for him, I've had to resort to bringing him home for lunch so he can get away from the ones that hurt him and so he can chill. He hates PE aswell, he can't run very well, he has loose ligaments in his feet so he falls over all the time. I have to walk him to school because of this because he'll be on the floor if I didn't. I've no idea about benefits for him, he can't walk home sometimes as his legs get so tired, help with a taxi to get him home would be a great help, I really need to learn how to drive.

[FluffyBunnyGoneBad]

I've spoken to ds about apsergers, he calls it a 'disease'

[FluffyBunnyGoneBad]

Bloody hell woman, you've been busy!