How can it be Asperger's with such huge problems?

[RockinSockBunnies]

Sorry - more of a rant than anything. I'm just getting so fed up reading about other people's children with a diagnosis of Asperger's that seem to be light years ahead of DSS in terms of behaviour and getting on with life. I read about Asperger's children who might struggle socially, but who behave themselves in school, follow instructions and generally seem 'quirky' rather than radically different from other children.

Although DSS is formally diagnosed with Asperger's, there is absolutely no sense that this is a better diagnosis for him to have than classic autism. Yes - he's verbal and can read excellently and is knowledgeable in certain areas. But for the most part, all of this is irrelevant given his massive behavioural problems and the difficulties of everyday life. Why is it that I don't read about Asperger's children as soiling themselves and not caring, licking or biting other children, manically laughing or repeating nonsense words endlessly?

I am just so fed up. The statementing process is ticking along, the ABA programme is started at home. But I feel such jealousy when I go out and about and see these lovely, NT 8 year old boys, chatting, laughing, watching a play, going to the cinema, playing football, being with friends. We have none of this with DSS and I doubt we ever will.

I just don't understand why DSS is how he is. Why it is, that if he's drawing or reading a non-fiction book on something he likes, he can have a fairly normal conversation. He can talk about his autism with us. So how can he behave in a controlled way at these times, yet behave so atrociously at other times?

I read about Asperger's children who second-guess all social situations, try and fit in, try and understand the social rules etc. DSS does nothing like this - he doesn't seem to care about fitting in or having friends. He doesn't care if he's constantly in trouble at school and I just don't understand why.

It's different levels of ASD, like there's different levels of Down's syndrome - from children who are barely mobile and will be cared for all their lives, to young adults who work as waiters.

And he may yet improve. Luckily, ds1 was 3 when he stopped soiling himself but I had to give him an immediate consequence. the poo wasn't enough to stop him because he really didn't care.

I think you are right though, it does sound more Autistic than Aspergic (just as Ds1, despite his speech delay as a preschooler, is more Aspergic than Autistic) and in your shoes I would ask for him to be re-assessed.

The main thing you need to remember is that autism in all it's forms is a spectrum. So there are going to be differences between children.

My understanding of the diagnosis of aspergers is that it is autism but with out a speech and language delay before 3 years old.

I think the stories you may read on here about children with AS behaving well at school are nearly always followed up by how difficult they are at home.

Some AS children are able to mask there difficulties in some situations, but this is stressful and extremely hard work.

Continually trying to be something that you are not can lead to poor self esteem and even depression.

Have you read Tony Attwoods "complete guide to aspergers syndrome" it is a really good book.

Sorry if I haven't been any help and I hope someone else comes along soon.

It's taken five years to get a diagnosis. I'm not sure that a re-assessment would necessarily help at present. I'd be interested to know how a diagnosis of ASD/Asperger's is reached - if it's simply whether there was speech delay or if it's more complicated than that.

What kind of consequences did you use for the soiling?

The Tony Attwood book is on my radar and I'll get it as soon as money comes in at the end of this week - thank you.

I understand that some children can mask difficulties at school and I wish DSS could. It may be stressful, but then he's permanently anxious and argumentative anyway, at home or at school. He seems to enjoy being naughty and the negative attention. Reward charts and praise don't seem to motivate him at all.

As far as I know the only difference between autism and aspergers is language delay and IQ.

Just because he has Been dx with aspergers it doesn't mean that he cannot have signifcant difficulties.

My ds, doesn't try and fit in, he hits, bites and kicks. He is both physically and verbally agressive. He had toileting issues until he was 7/8.
He doesn't second guess situations... His perception of the world is to saythe least hard work!
He also has massive issues with sensory integration, impulsive risk taking behaviour.
He can't cross a road safely, brush his teeth properly or a lot of other selfcare things.

He is getting better ( a bit) at some things, but it's a long long road to teaching him in small bites.

Aspergers can be awful rather than just quirky. It's the name that makes it sound less of an issue. This is why ds has ASD/AS.

DSS's medical report states in a number of areas that he meets the criteria for ASD. It's all very helpful until it then gives a diagnosis of Asperger's.

All the things that one reads about Asperger's suggests oddities and quirks, rather than massive, overwhelming issues. DSS's IQ is high - his language and vocabulary far ahead of his peers. But frankly, this is of no help to us given the level of the other difficulties.

Carrotcake - how old is your DS? What support has he had?

He 12 :)

we have had a bit of support from CAMHS, but that's pretty much it tbh.
However.. There's this board which is brilliant for ideas that might work.
( special mention for amberlight, who has enlightened a lot of us to the world of asd)
I have read just about everything I can get my hands on, books research papers etc

School hasn't been great, but I keep plugging at them.

You just have to try out different ideas and see what works for your son and take heart that there are others in the same situation.

:) < kindly smile>

Why not have a look at BIBIC ( just google).

www.autism.org.uk/about-autism/autism-and-asperger-syndrome-an-introduction/high-functioning-autism-and-asperger-syndrome-whats-the-difference.aspx

there's not a great deal of difference really

I know a lot of people seem to think high functioning means that it doesn't affect them as much, but what I was told by the psychologist my son saw was that it's about intelligence (and I assume that it's executive functioning in that case) so if they have autism with average or above intelligence then it's HFA or AS and below average intelligence then it's just Autism.

My son is one of the just quirky ones, well it's quite a bit more than just quirky - but that's compared to NT children rather than your son if you see what I mean, but I've worked with quite a few children with AS and how it affects them varies massively...so it's absolutely not just you. It just depends on which traits they have, which isn't covered by whether it's AS or Autism.

Is he 8? Just because you mention 8 year olds, my son was much more noticeably autistic at 8 than he is now at nearly 15 - if that makes sense, lol, he's changed massively as he's got older.

Rockin... I guess the fact the your Dss has advanced language skills is what led to his Aspergers dx.

As far as the issues not being overwhelming with AS I think many people would argue that point with you.

Aspergers in not mild autism. All children and adults present in different ways and have different difficulties.

Some children are not able to differentiate between types of attention. Any attention is attention whether it is possitive or negative.

If you are struggling with his behaviour might I suggest that you go back to your GP and ask if there is any kind of support available in your area.

To the uninformed, Aspergers is seen as 'mild' autism, because many of them mask it so well.

But it comes with a whole raft of other problems, likewise high functioning autism.

Many people have a crazy preconceived idea of what autism is and frankly they need educating.

I'm sorry you and your lad is finding it difficult at the moment. It won't always be like this (I hope)

I would try not to get too hung up over the name of the diagnosis. DS also has Asperger's, but his diagnosis letter says 'autism spectrum disorder' as it's a broader term. Asperger's is an ASD but so is autism and by leaving it open it means that he could be anywhere on the spectrum. I think it's more helpful that way as people can move along the spectrum with age/intervention, and even from situation to situation.

DS is cognitively bright, has an advanced reading age, and his NC levels are above average. Yet his needs are severe enough to need a residential special school. Sometimes he can appear charmingly NT, sometimes he can seem 'just a bit quirky'. Other times he'll having an almighty meltdown which requires restraint and puts the health and safety at risk of anyone nearby.

My experience with DS though has been the opposite of tabulahrasa - he is 12 now and seems more autistic than he used to be. I think it's because he used to do 'silly' things like rolling around and crawling under tables - which isn't so bizarre at a young age, but when they haven't grown out of it by 12, it really starts to look strange.

^^My son is the same (are you me!).
he is 13 and has a dx of AS. he has always managed to mask difficulties outside the house but at home it is very very challenging. He also has a placement at a specialist AS boarding school. His needs are complex.
We dealt with soiling issues until he was about 11.
As he gets older, things change because we 'manage' him in a different way and tend to avoid situations that we know will stress him and cause him anxiety. Although in an effort not to have to drag him to the shops a few weeks ago to buy new school trousers, I thought I would simply measure his waist and buy online - ta da! job would be done. This simple excercise took about 2 hours of persuasion on my part and I still ended up being thumped on the face.
Aspergers is not just 'quirky' at all in my experience - in fact, I think when others apply this label, it belittles the difficulties my son and, in turn, other members of our family, have to live with day in, day out.

I don't think my son is just quirky, just to explain a bit more, lol

I do think though that, that is the opinion of most of his teachers at school and people who meet him for brief periods of time.

We've been massively lucky in some ways, but then that comes with its own drawbacks.

He's never had any behavioral problems, so when things go wrong at school he doesn't kick off or act out. Instead I get him arriving home distraught and crying and unable by that point to even tell me what the problem is. School don't see any of this, so even when I'm having to send him in in tears and he's coming home in tears, they think they're doing a fantastic job with him.

He wants to sit quietly in a classroom and learn - that's not what always happens in a mainstream classroom and this stresses him massively.

He cares a great deal about having friends, but is completely unable to form relationships - so he's never had any (until very very recently and that was with help) and this affects him massively.

I order school trousers online as well, lol, I just guess sizes and hope for the best

I do think though that some things are harder to deal with for parents than others and more immediately noticeable to strangers and he does have less of these, but then that makes people assume it's not a big deal, when it is still a major factor in nearly everything we do...

I also think people see children like my son, they fail to appreciate the difficulties he does have and they don't see children with harder to manage difficulties because they're not in mainstream school and are even less likely to be in shopping centres or attempting (and in my son's case not managing) mainstream activities - do there's an assumption that it is just about being a bit quirky.

sugarcandyminx - he hit puberty and turned almost overnight from a very childish immature 13 year old into a going on 40 14 year old, lol, I don't know if it will last or if it's typical or not, but I'm quite liking some of it... other bits not so much fun

My daughter had speech & language delays... in fact she was slow to do everything!.... but her diagnosis is still Aspergers. People seem to think that just because someone has a high IQ, they're fine; frankly, someone can have the highest IQ in the world but if they can't go to the shop to buy a loaf of bread, or hold a conversation with a mate, how is it helpful or even relevant that they have GCSEs or whatever?

It makes me REALLY cross when people claim they're a "bit aspie" in a bid to appear quirky or eccentric. My experience of Aspergers is that it's not the least bit quirky..... it's a cruel and exhausting disability for everyone involved.

My understanding of the difference between Aspergers and Autism is this: people with Autism are different but they don't know they're different and, even if they did know they're different, they wouldn't care; people with Aspergers are different but they also know they're different and don't want to be different but don't have the innate social skills to fit in.

Obviously that's not a medical or "official" explanation but it's one I've used when people have asked me about it.

From what you say it sounds as if your experience of the reality of Aspergers is totally at odds with your expectation of what the diagnosis would present (ie the former being way more than the latter).

I know exactly how unbelievably difficult and upsetting his challenging behaviour can be. However, in the long run this may be to his advantage. The aspie child who turns all his anxiety and frustration inwards, who withdraws and gets silent and doesn't want to engage or draw attention to himself --- these are the children who slip beneath the SEN radar. It's MUCH more difficult for a school (and therefore an LEA) to ignore a child who regularly and frequently goes completely bonkers (as my daughter did) and who behaves totally inappropriately. It may seem like little comfort, but it will give you a lot more ammunition when it comes to you getting the support your son and ALL your family need. Keep a diary (a big one, if need be!) itemising every problem, every difficult event, every bit of inappropriate or challenging behaviour at home and at school. In due course if your LEA say to you "so how often does such-and-such happen?", you'll be able to tell them exactly.

As for feeling jealous.......... sigh. I know what you mean. I sometimes allow myself the luxury of fantasising about what my life would be like if my daughter didn't have Aspergers.... how much happier she'd be and, in turn, how much happier I'd be. I can't pretend to like it, even if it's a part of who she is, because I think it's so cruel.

Anyway........ know that you're not alone with any of your frustrations and upset. xx

tabulahrasa....that's encouraging.

I've just started a thread about not knowing what to do with my boy. 10yrs, autism, OCD/Tourettes.

He's a bright boy.....reads well.....tries to fit in but is overwhelmed and full to the brim with anxiety.

He was diagnosed at 4 with autism because he had the language delay. His psychiatrist calls it Aspergers....

It IS just one bit spectrum.

DS1 (8) has a dx of autism as he scored very highly on the ADOS, however, when I was told his dx they said it could also be called AS as he never had a language delay and he is obviously very high functioning - he could get MENSA level scores on age 16+ IQ tests when he was 5.
Technically he gets on fine in school in as much as that in every area other than spelling he is functioning at or above the required level, however he struggles in many areas when he is there, especially anything involving group work, where he throws tantrums/cries if the other children don't do the thing he wants to do, if they have visiting staff eg to do music workshops he will hide under tables. He chases other children around the yard and is convinced they like it, or gets upset when other children want to play with him. However his social skills have come on massively this year as he has managed to find a friend - another boy who likes starwars and lego.
He doesn't lick other children, but he does lick water out of puddles, or off metal railings, his last school had to bring in rules not to eat the stones out the playground when he should have been doing PE etc.
DS does try and fit in in social situations, sort of. On a one to one basis he might manage to come across as normal. However, anywhere slightly out of the ordinary eg taking him to the docs yesterday sends him into a screaming, hyperactive mess.
The 2 schools he has been at have never seen his behaviour as a problem (both convinced he was just sensitive but not autistic) - apparently being sat under a desk for two terms and throwing a tantrum if you are called out, or sitting 2metres from any other children at carpet time with your back to them, is perfectly normal yet the autism team observed him for 20mins there and said his autism was blatantly obvious, so much so they didn't really need to do the ADOS test, so I think the whole 'being normal and fitting in' definitely depends on the person's perspective.

They are dropping the label of 'Asperger syndrome' and calling all of the autism spectrum just one thing, which I believe will start applying to new diagnoses from April this year. So children will either have mild, moderate or severe autism spectrum disorder. And they may also have mild, moderate or severe learning difficulties, perhaps along with mild moderate or severe speech and language difficulties, and/or indeed mild moderate or severe sensory processing difficulties, etc. So a child will end up with a full set of diagnoses and plans for therapy and assistance, rather than one weird label saying "autism" or "Asperger syndrome" that does not in any way reflect the level of difficult that child has with particular aspects of life, or their life outcomes in the future.

I think it'll be an improvement.

I'm not at the mild end of the spectrum, and as a child it was clear I wasn't., But now I can act 'normal' and people might mistake that for normality. Except I have to work so ruddy hard to do it, all day, every day, all my life...and it's so exhausting.

IQ is absolutely meaningless for good life outcomes for us, research shows. All that counts (they found) is whether we can somehow learn social skills well enough to disguise our difficulties.

All interesting stuff.

But meantime, there's a lot of equally exhausted parents who desperately need real answers. Still working hard towards achieving those aims.

Can I get personal amberlight? Did you have any co-morbid conditions? OCD or ADHD?

I suppose I'm looking for reassurance that my son can "grow" out of it.

Sorry, but he won't grow out of it.
Like my Aspie, he may develop a thick veneer of acceptable social behaviour and learned manners. But when mine is under stress, that veneer evaporates.
The thing that has helped my DS is to recognise his stressers, identify them before they become unmanageable and act to avert the oncoming explosion.
He can Pass For Normal a lot of the time, but his essential nature is unchanged.
I'm very proud of what he's achieved over the last decade, but it has taken a lot of effort and self-knowledge on his part, and a lot of listening and flexibility on everyone else's.

wendi - my DS definitely hasn't grown out of it, he's kind of grown into himself a bit which means he's managing things a bit better.

He's coping better, which don't get me wrong is good, but I wouldn't want to be saying, oh he'll get better as he gets older don't worry about it or anything like that.

Put it this way, he's doing much much better than I thought he would be 2 years ago and I'm very happy and relieved about that, but I'm aware that he is still affected by it and that something could happen to make him not be coping quite so well again...

' But now I can act 'normal' and people might mistake that for normality. Except I have to work so ruddy hard to do it, all day, every day, all my life...and it's so exhausting. '

((hugs)), or whatever you would prefer as an expression of support and admiration. It's why DS at home and DS in the world are very different creatures. Being himself when he can enables him to go out and function in the world.

Thanks both.... of course, we're trying to teach him "how to" as we go along. It's just that the autism seems easy compared to this anxiety/OCD.

Sorry RockinSock..... have hijacked your post. Your son sounds very like mine WAS which is why I say, get some help advice on those stress inducers.

DS doesn't have OCD or anxiety issues. That's DD.
I posted about that on Eyeofnewt's G&T thread.