Right or Wrong ?

[pingu]

Hi there everyone. (Happy Easter <'> )

 

Forgive me but I am once again on a ramble. Over the last 3 years since the time of Kieran?s diagnosis, we have been coming to terms with his aspersers and learning a lot about it in the process. This site has been the biggest help I could have wished for, you have all been brilliant. But I am wondering if it is actually aspergers he has???

 

Let me explain.

 

For the past few months he has got so much worse in terms of. "change" and behavior "obsessions" and little attention for anything else, when he was diagnosed he was said to be "at the milder end of the spectrum" (he was 5 at the time) and I clearly remember going through those meeting scratching my head at questions like "does he have any routines?" and "is there anything he does repetitively?" At the time the only problem with him (as far as we were concerned) was that he liked to watch fans / drains / bouncy castles, got upset if he was over stimulated and he spun his arms very fast when nervous. There was none of what we have now.

 

Now we have the full works - obsessions / interests / routines / compulsion / hyperactivity / behavior / aggression / very intense ideas (and HUGE meltdowns if not carried out) - he has a reading age of 5 and a writing age of 4 (and he is 8.) He eats with his fingers - has a meltdown if a tap is dripping because he worries about what will happen about everything all the time. He is the original MR Worry and constantly asks "but what if". He washes his hands every time he comes into the kitchen, and when he's eating he washes his hands after touching any of his food, (he eats with his fingers). We have tried and failed to stop much of the behavior, He has muscle tone problems he's developed a "lean" which is becoming more obvious by the day and has the attention span of a sparrow.

 

And what im not getting is that, aspergers kids are 'supposed' to have No speech delay (he did) no signifitent learning disabilities (he has) I could go on but ill be here all night... so anyway, I was looking once again around the internet and I keep coming across this same thing, and it reads ..........."As in autism, Asperger syndrome shows impaired reciprocal social interaction and restricted, repetitive or stereotyped patterns of behavior, interests and activities. Unlike autism, intellectual ability and syntactical speech are normal"

 

so im here wondering if :-

1 ) I am over exaggerating

2 ) he has autism and not aspergers

3 ) he has adhd / aspergers

4 ) he has adhd at all

5 ) he has learning difficulties on top of (or) as part of the aspergers

6 ) but if 5 were true how come 99 % of what I am reading is telling me that AS kids don?t "act" like my son.

 

He devotes his life to a bathplug, and whilst I understand his need to do this, and give him the time and space to do this, and deal with the meltdowns when he is unable to do this, I still have yet to find one documentary / book /experience. where the child has such an intense nature, such a time consuming and mind boggling level of activity. Apart from the meltdowns which all documentaries seem to focus on I can find no similarity to him.

 

I didn?t mean that bit in a way that I am looking for someone to compare him to, and I understand our kids are very different and no children can be compared - its just sometimes I don?t think he's got AS because he seems to have so many other problems, its like he develops something new every week and just keeps getting stranger and more behind???

 

I am confused as to what?s going on. School is trying to help, but even his teacher said he is been difficult and has so little attention he has to be sent out for most of the day. They say he's reading, but its reception stuff, and seem pleased with this - me - im worried sick, what if he's dyslexic and they are blaming the AS, because that is what is happening, every little thing is been put down to AS but all these things are signs of other things, Now im either been incredibly paranoid, or im right, I just don?t know which, so thats what brings me here to ramble. Im not even sure it makes sense, I seem to have been sat here ages trying to write down all that in a way you will understand it from my point of view.

I know the label shouldn?t matter and im not trying to label him with anything else, but im so scared that he has different un associated problems (that are not common with AS) or if he?s more at the autism end of the spectrum, and loves his own world so much that as he gets older he is now shutting off this boring world around him.

 

Please forgive the long rant. but I couldn?t sleep. (again)

Thanks for reading <'>

 

shaz

 

PS Added later - I was mooching again and came up with the following, i thought i would add this = "Autism used to be considered a rare disorder with a population prevalence of about 0.04%, of whom 70 80% had a significant learning disability. More recently, the extended spectrum of autistic disorder gives a population prevalence of at least 0.6%, of whom 70 90% are of normal learning ability. So far, the evidence is that this shift can be explained by changing concepts and diagnostic boundaries as well as by the wider recognition of autistic-spectrum disorders rather than by any real substantial increase (Fombonne, 2003). "

 

Now i am confused?????

Edited April 8, 2007 by pingu

[Clare63]

Awwww Shaz , you certainly have a lot on your mind no wonder you can't sleep. Would like to give you a more depth reply but feeling a bit knackered now and need my bed, just wanted you to know I am thinking of you and will reply properly tomorrow, as you know Connor as AS but whilst we can compare I don't think it will help much as you say all children on the spectrum are different. My son acts and behaves according to his anxiety levels and whilst he does not have any learning diffiuclties at time of high stress he can't add two numbers together. When he's overloaded with worry he really struggles to function. Anyway hope you get some useful response and as I said I will re read and respond to your thread tomorrow.

Night night.... <'> <'> <'>

Clare x

[pingu]

thank you Clare.

I think ill head up too, im going round in circles here. Its just becomming so clear he is different, and i dont know whats happening to him right now.

have a good sleep hun.

shaz

 

 

Awwww Shaz , you certainly have a lot on your mind no wonder you can't sleep. Would like to give you a more depth reply but feeling a bit knackered now and need my bed, just wanted you to know I am thinking of you and will reply properly tomorrow, as you know Connor as AS but whilst we can compare I don't think it will help much as you say all children on the spectrum are different. My son acts and behaves according to his anxiety levels and whilst he does not have any learning diffiuclties at time of high stress he can't add two numbers together. When he's overloaded with worry he really struggles to function. Anyway hope you get some useful response and as I said I will re read and respond to your thread tomorrow.

Night night.... <'> <'> <'>

Clare x

[Frangipani]

Hi Pingu <'> <'>

 

 

Many kids with Aspergers can have what they call co morbids, i.e. a bit of this and a bit of that. Like, ADHD, OCD, Tourettes, Mobility Problems, Dyspraxia/Dyslexia...

 

Many dont just have Aspergers also named High Functioning Autism. They can also have co morbids, every child is so different, one may have this one may have that.

 

Just a few characteristics of some of the co-morbids are:

 

e.g. ADHD - huge meltdowns, often do things that put themselves at risk, super sensitive, unable to stay still, often a limb will obsessively keep moving when they talk i.e. my son constantly sits with his legs flapping open and closed obsessively during conversation, I have been told not to make him stop as this calms him, a conversations with him you need to sit down with him, this makes it easier for him to communicate.

 

 

OCD Obsessive Compulsive Disorder (the constant washing of hands is a sign of this)Need things orderly, Neat Freaks, thats a good thing

 

Autism quirky behaviours Can affect one child more than another e.g. - light and noise sensitivity easily overloaded and go into meltdown, spinning things, lining up things, needs the day outlined to avoid meltdown, a change to routine could start world war 3,

 

Tourette Syndrome- ticks and twitching

 

There are about 3 or 4 others I could name one of the Moderators will have some access to some good links about this.

 

Many parents experience the confusion you are going through and at times question what their child has.

 

Support groups are a great help when you are still finding out, and a wealth of information. I attended one monthly just to survive, and they have some professionals talking about the various co - morbids. That was how I survived before this forum they really helped to learn about these in more detail.

 

Having the time to actually talk to parents going through similar behaviours you learn a lot from each other. This forum has been very helpful.

 

A few things I have realised is - Stress, over tired, unachievable high expectations of teachers or parents can cause 'sensory overload' depending on how long this goes on for i.e. months years, unrecognised. A child can go from HFA to Moderate Functioning to even Lower Functioning Autism.

 

My sons doctor and I have seen my son at all three levels, as has many parents on here, because we didnt see the warning signs, or noticed them but didnt understand them. I am sure I have caused irreversible damage on my son as society kept making me push him too hard. Even his father, it was only when he turned 17 we both stood up to his dad and had a family meeting over it and my son said 'hey' I have Autism, I can't do what you are expecting of me.

 

 

You are not alone Pingu, like I often say the more you speak to Paediatrician, note down things in your diary, discuss them with the doctor, they can often explain a cluster of behaviours being 'xyz' over time you will become a pro at it.

 

It is a frustrating process, sifting through it all. Perhaps someone may know a great book that covers all these Co Morbids.

 

Hang in there Pingu, <'> it gets better, when the pieces of the puzzle all come together.

 

Love

F xx

Edited April 9, 2007 by Frangipani

[pearl]

Great reply Frangi, will just add a big <'> to that.

[Cat]

You have already answered your own question. It's not that children with AS are 'meant' to have no speech delay there is a criteria which has so far not been changed, which clearly states that if there was a speech delay then it can not be Aspergers Syndrome simple as that.

 

I have a friend who asked for a reassessment because like your son her son was becoming more and more full on with everything. The Proff who she is seeing said straight away that because there had been a speech delay the dx could not be AS.

 

Cat

[baddad]

Hi Pingu -

Not sure if this is helpful, and certainly only 'general' comments rather than specific, but...

 

Over the past few years the differences between HFA/Aspergers seem to have got blurred in the minds of many professionals. Personally, I don't think the labels are helpful at all, because each comes with a set of 'stereotypes' that impact negatively on 'holistic' responses... What should happen is that the childs needs get responded to/met, not the ideas of what those needs are as predicted by the diagnosis...

Now, having said that the 'holistic response' isn't the norm (no matter what they tell you!), and the two diagnosis do exist, so it would be really helpful if the medical professionals making diagnosis were firm in their minds about what the differences are!

My son has a dx of (hf) autism. He has this because his speech was mildly delayed (3-6 months out of 'normal' range). I think his diagnosis is 'correct', but chances are had he not been dx'ed so early they would have asked 'was there any speech delay?' and I would have said 'well he was a little bit slow but nothing that stood out' and they would have made a dx of AS...

By the book, speech delay = Autism while no speech delay = AS.

Significant learning disability generally predicts a dx of Autism (but not always) while normal or above average intelligence predicts a dx of AS (but not always!)

In my own area, one of the leading paediatricians making dx seems to have a preference for the word 'autism' in her diagnosis (to the point that people have commented on it to me), but I have heard others almost always plump for 'AS'. A lot these days seem to like really non-specific labels like 'PDA'...

Parents often seem to prefer 'AS' unless they're fighting for provision/support, as the perceptions of AS are less challenging for some. On the downside, support services take the same (erroneous IMHO) view and debarr those with AS from accessing appropriate support. Ditto schools/LEA's...

Recently I was talking to someone researching the conditions and he offered the observation (i.e. no solid evidence either for or against) that people with AS are more socially interested (i.e. Lorna Wings 'active but odd' group) where people with autism are much more classically 'Aloof', choosing only to interact for their own purposes or because the situation expects them too.

 

Taking the 'medical' approach, my son now probably has more 'AS' features than autistic - he has an IQ of around 120, a reading ability way above his years, and higher than average results in maths and receptive language. The flipside of that is that he still has problems in his expressive language (uses wrong tenses sometimes - but only in verbal expression, not written), cannot write legibly, cannot rote learn things like times-tables/song lyrics, and......

He also has a co-morbid dx of ADHD, and it's my belief that it's this co-morbid which effects his (high) social interest and poor 'concentration' - effectively pulling him in different directions to his 'typical' diagnosis.

He's borderline dyspraxic, which effects his fine and gross motor skills, and has an effect on his 'stims'/behaviour because of associated poor muscle tone.

Put that lot toghether and for one piece of 'behaviour' you have 3 different explanations:

He rocks backwards and forwards when sitting in assembly -

• Because he has autism and is 'stimming'
• Because he has adhd and is bored/driven
• Because he has dyspraxia and his muscles start to ache

Truth is, it's probably part of all of those things, and treating any one 'explanation' isn't going to change a thing. Ritalin might 'solve' the middle one, physio might 'solve' the latter, but it still leaves the first and what does it matter anyway??

Rocking is a universal response to stress -watch anyone, 'comforting' themselves while crying and they will rock. My son feels environmental stress almost constantly - far easier and 'right' to help him find a way of doing that that has less impact on those around him (i.e. 'mental' rocking/ a smaller 'orbit') than expect him to stop and internalise all of that stress...

Sort of wandered from the point a bit now, so i'll clear orf - but what i was trying to say is that Kieren's behaviour is 'the sum of the part's', and as other influences impact on him (growing up/school - all of the milestones we all go through) the individual 'parts' will change and their influence on the 'whole' will change accordingly.

If there was a significant speech delay etc it does sound as though AS might be a slightly inappropriate 'label', but that only matters if it's effecting how people are responding to his needs. If you think that's the case and it's having an adverse effect, then it's well worth pushing for further investigation...

L&P (and sorry for rambling!)

BD

[Lucas]

Here is why AS and Autism never should have been seperate diagnoses in the first place, they simply aren't different enough. I was diagnosed AS, I had a speech delay, I was LOT more able as a teenager than I am as an adult.

 

Diagnosis only gives a snapshot of abilities taken at one point in time, even counting the detailed development history a diagnostician is supposed to take into account. Someone diagnosed AS one week can be valid for an Autism diagnosis the next, which is why virtually all Aspies fit the criteria for an Autism diagnosis in the DSM-V.

 

An Autistic is Autistic, any variation between Autistics is down to them being different people with different experiences. Yes there are 'Autistic cousins' and broader phenotypes, but none can be described in terms of high/low functioning. That's the problem with the linear spectrum-model: sometimes a curbie parent likes to explain to me something they don't understand but I do, they get it horribly wrong but won't stand to be corrected. I tell them quite straight that Autism is complex, but the spectrum-model is too simplistic to explaining it in any way at all. It's more like a roundabout: everyone on it is spinning and swinging, some are spinning more than they are swinging, some swinging more than they are spinning and whilst everyone knows this, they have no chance of saying who is doing more of what.

[Clare63]

Shaz, Hope you managed to get some sleep last night with all that stuff going around your head. You have got some fantastic replies above and really don't know what more I can add, I could particularly identify with what Frangi was saying, I am looking forward to the day when we can start putting some pieces of the puzzle together. The important thing to remember is that we know our children better than anyone, we love them and want the best for them and through this love we will support, fight for, understand and accept them which is really all we can do to help them achieve their own individual potential. I think I have said before I am more than happy to talk, listen and share information & expereinces so please don't hesitate to contact me. Good luck and I tyruly hope you feel a little better today.

 

Clare x <'> <'> <'>

[Suze]

Hi don,t know if this is relevant, but when my son was dx at 8yrs , he did,nt seem that bad to me ...if you know what I mean ........however things changed and so did his autism.He now displays behaviours that were,nt apparent when he was dx,...he flaps a bit now uses different tonation to his voice,and is affect alot more by sensory problems.

[JsMum]

Pingu your post and the replies are very interesting, J has been suspected ASD from his GP, his school and consultant and SLTherapist say AS and J had speech and language issues, so I dont get it either, J fits a lot of the discriptions for AS but again J has Dyslexia and learning difficulties, and speech language delay! his speech is now there but his understanding is way off and he takes statements litriatly, he struggles having a conversation too, structuring words together and remembering what he is saying.

 

I know that ADHD was blamed for a lot of problems J had for years hence why we want him fully assessed again for ASD and ADHD with other co morbids such as PDA and Sensory Diffuclties.

 

could you have him re assesed and evaluated again?

 

JsMum

[butterfingersbimbo]

<'> pingu i would have him re-assessed but not for the autism, for co-morbids! it sounds like he is stressed too, hopefully if you can talk to someone about whats going on with k it might be possible to figure out what's triggering his stress....if that makes sense......

[pingu]

hi there.

yes that does make sense <'> thank you all so much, and BD thankyou for putting it in a way that was spot on, thats what i was trying to say.

 

im going to print off your replies and memorise some of the points for the psych when she comes.

 

you have been wonderful. thank you.

x

[Karen A]

Hi Pingu -

Not sure if this is helpful, and certainly only 'general' comments rather than specific, but...

 

Over the past few years the differences between HFA/Aspergers seem to have got blurred in the minds of many professionals. Personally, I don't think the labels are helpful at all, because each comes with a set of 'stereotypes' that impact negatively on 'holistic' responses... What should happen is that the childs needs get responded to/met, not the ideas of what those needs are as predicted by the diagnosis...

Now, having said that the 'holistic response' isn't the norm (no matter what they tell you!), and the two diagnosis do exist, so it would be really helpful if the medical professionals making diagnosis were firm in their minds about what the differences are!

My son has a dx of (hf) autism. He has this because his speech was mildly delayed (3-6 months out of 'normal' range). I think his diagnosis is 'correct', but chances are had he not been dx'ed so early they would have asked 'was there any speech delay?' and I would have said 'well he was a little bit slow but nothing that stood out' and they would have made a dx of AS...

By the book, speech delay = Autism while no speech delay = AS.

Significant learning disability generally predicts a dx of Autism (but not always) while normal or above average intelligence predicts a dx of AS (but not always!)

In my own area, one of the leading paediatricians making dx seems to have a preference for the word 'autism' in her diagnosis (to the point that people have commented on it to me), but I have heard others almost always plump for 'AS'. A lot these days seem to like really non-specific labels like 'PDA'...

Parents often seem to prefer 'AS' unless they're fighting for provision/support, as the perceptions of AS are less challenging for some. On the downside, support services take the same (erroneous IMHO) view and debarr those with AS from accessing appropriate support. Ditto schools/LEA's...

Recently I was talking to someone researching the conditions and he offered the observation (i.e. no solid evidence either for or against) that people with AS are more socially interested (i.e. Lorna Wings 'active but odd' group) where people with autism are much more classically 'Aloof', choosing only to interact for their own purposes or because the situation expects them too.

 

Taking the 'medical' approach, my son now probably has more 'AS' features than autistic - he has an IQ of around 120, a reading ability way above his years, and higher than average results in maths and receptive language. The flipside of that is that he still has problems in his expressive language (uses wrong tenses sometimes - but only in verbal expression, not written), cannot write legibly, cannot rote learn things like times-tables/song lyrics, and......

He also has a co-morbid dx of ADHD, and it's my belief that it's this co-morbid which effects his (high) social interest and poor 'concentration' - effectively pulling him in different directions to his 'typical' diagnosis.

He's borderline dyspraxic, which effects his fine and gross motor skills, and has an effect on his 'stims'/behaviour because of associated poor muscle tone.

Put that lot toghether and for one piece of 'behaviour' you have 3 different explanations:

He rocks backwards and forwards when sitting in assembly -

• Because he has autism and is 'stimming'
• Because he has adhd and is bored/driven
• Because he has dyspraxia and his muscles start to ache

Truth is, it's probably part of all of those things, and treating any one 'explanation' isn't going to change a thing. Ritalin might 'solve' the middle one, physio might 'solve' the latter, but it still leaves the first and what does it matter anyway??

Rocking is a universal response to stress -watch anyone, 'comforting' themselves while crying and they will rock. My son feels environmental stress almost constantly - far easier and 'right' to help him find a way of doing that that has less impact on those around him (i.e. 'mental' rocking/ a smaller 'orbit') than expect him to stop and internalise all of that stress...

Sort of wandered from the point a bit now, so i'll clear orf - but what i was trying to say is that Kieren's behaviour is 'the sum of the part's', and as other influences impact on him (growing up/school - all of the milestones we all go through) the individual 'parts' will change and their influence on the 'whole' will change accordingly.

If there was a significant speech delay etc it does sound as though AS might be a slightly inappropriate 'label', but that only matters if it's effecting how people are responding to his needs. If you think that's the case and it's having an adverse effect, then it's well worth pushing for further investigation...

L&P (and sorry for rambling!)

BD

 

 

 

 

 

Badad you are wonderful.I know the post was not even fo me.However you have provided such a helpful answer for me too.Karen.

[BusyLizzie100]

Hi all. Lots of good stuff has been said on this topic already, but I just wanted to add my bit!

 

Asperger syndrome is still autism; it has its own diagnostic criteria but it is still an autism subgroup in that it is on the autistic spectrum. Language may not be delayed in AS but there are still issues with communication skills, such as taking things literally or not understanding the to and fro of conversation etc. There is huge debate about whether AS and HFA are the same or different, but I won't go into that right now!

 

The problem, as has already been mentioned, is that different professionals diagnose in different ways, or use different criteria or even interpret the same criteria differently. On top of that, professionals tend to diagnose from their point of interest or speciality, eg Sp&Lang Therapists, Occupational therapists, psychologists, interest in ADHD or ASD... so in theory you could get a bunch of professionals assessing the same child and coming up with differing diagnoses. And then there is also the possibility of comorbidities.

 

I have two sons on the spectrum; one has a diagnosis of autistic spectrum disorder (ASD) and the other has Asperger syndrome. They are VERY different from each other but do share core difficulties - basically the triad of impairments - and sensory perceptual difficulties. The AS lad also has 'elements of ADHD' which didn't warrant an 'official' diagnosis from the professional who assessed him, but those elements of ADHD do create additional difficulties for him.

 

Both of them go up and down the spectrum from time to time; DS2 (with ASD) is finding it much harder to cope at school these days and as such his behaviour is deteriorating rapidly and he seems much more autistic. If things were better at school and he were to receive appropriate intervention, however, he might appear less autistic. Someone described autism to me as a defence, and when things get tough the autistic barrier comes up in the form of behaviour or more 'autistic symptoms'; when things get better, the barrier comes down a bit. A bit simplistic, I know, but it works for me.

 

DS1 (with AS) was diagnosed at age 7, while DS2 was diagnosed at 4. The average age for AS diagnosis, apparently, is 9, because it often takes that much longer for the differences and difficulties to appear or be recognised - for example kids with AS tend to have superficially OK language, but their impairments eventually become apparent, whereas kids with ASD are more likely to have more obvious SP&Lang difficulties which are noticed earlier.

 

Does that help?!

Lizzie x

[smiley]

Hey hun <'>

 

So confusing isn't it - just when i think i've got it figured out - either a 'new' dx gets added - or my son totally changes!! . I found a book by Donna William really, really helpfull - Jumbled Jigsaw, i think....

 

PS - same here, Thanks BD <'>

 

Badad you are wonderful.I know the post was not even fo me.However you have provided such a helpful answer for me too.Karen.

[JsMum]

I think some of the explanations here are brilliant much better than the proffessionals explanations!

 

between us all we could get out a forum book explaning the spectrum, I am in orr.

 

JsMum

[curra]

I'm late to read this topic but just wanted to add that I find that this is a very important concern that I also share, and the replies are fantastic. I couldn't have found better information in a book or from the profs.!

 

There's one thing that worries me a lot though regarding my son's dx (AS) and it's that compared to other AS children in support groups or at school, he is less sociable, more withdrawn, more clumsy , less likely to empathise with someone and I also have some doubts about his dx which was made because he had no speech delay and is very talkative. I'm with Lucas on this. AS and Autism should not be seperate diagnoses because they aren't different enough. I see all the time that other AS children have friends, laugh, go out, play sports, manage to be in groups (even a party),help at home, care for their siblings or cousins - the list is long and I won't bore you with it. My son does nothing of that, how can he have the same dx ? What I want to say is that although there are co-morbids in him recognised by the health profs, I don't feel they account for many of my son's behaviours .It seems to me that the distinction AS- HFA and ASD was not a good one in the first place as it leaves AS people who cannot function well in society at the same level with AS people who manage to live an independent life, with negative implications about support . Many times when I've tried to explain my son's dificulties to the "professionals" (especially school ) they've come out with the formula "He's not autistic, he has Asperger's and he's a bright boy so he'll grow out of his difficulties". The diagnostic criteria should IMO be based more on how a person relates to others and what the prospects are of functioning well in society, having a job instead of the age when a child started to speak.

BD, I'll borrow your words that sum up perfectly what I think about this (Thanks) :

 

"Personally, I don't think the labels are helpful at all, because each comes with a set of 'stereotypes' that impact negatively on 'holistic' responses... What should happen is that the childs needs get responded to/met, not the ideas of what those needs are as predicted by the diagnosis..."

 

Curra

[pingu]

Thay said WHAT?????????

 

He's not autistic, he has Asperger's and he's a bright boy so he'll grow out of his difficulties". The diagnostic criteria should IMO be based more on how a person relates to others and what the prospects are of functioning well in society, having a job instead of the age when a child started to speak.

 

 

My word ive heard it all now.

 

your problems sound similar to ours hun. im still chewing all this over so thanks for your replies, .

im going to hit my head on a brick wall now,

[Bard]

 

Yes, well, that's not very helpful is it?

When B went to Secondary, I sent an info sheet with him for the teachers he would come into contact with.

I began by pointing out.....

 

" Asperger's is hardwired into him. He will not grow out of it, nor is there medication that will

'fix' the condition. He can learn correct responses to a situation, and the learning gets a little easier as he matures. He may not have coping strategies for new situations.

 

I hope these points might explain some of the areas he finds challenging, and ways of approaching them.

These points are not meant to be justification for any of his actions, only a possible explanation. The diagnosis of Asperger?s is like a key to understanding and possibly predicting his responses."

 

I then listed some of the things he does and how to respond.

Those teachers that bothered to consider the advice had a lot less trouble than those that didn't!

By the second term, more of the teachers were onboard with B and some of the implications of his AS.

Now I've only got 3 holdouts, one of whom is the PE teacher.

It's a good job that we are used to explaining things patiently over and over again, consistently.

Many NTs need it.

Onwards and upwards, or sometimes RIGHT THROUGH THE MIDDLE!

Edited April 13, 2007 by Bard

[Bard]

OOPS!

Sorry Pingu, that didn't work very well.

I meant to quote the well-meaning idiots that thought he would grow out of his Asperger's.

That's not helpful.

I often find banging my head on a brick wall soothing and uncomplicated compared with being the filter between B and the world.

No insult intended pingu, just a technoclot at work.

[Lucas]

Possibly the most offensive part of their attitude is the implication that those who do not 'grow out of their difficulties' are not bright. If anything, being smart and Autistic is the worst thing a person can be: I'm very withdrawn and quiet now because I know saying anything can get me into trouble for reasons I'm not immediately aware of at the time.

 

Here's an important Youtube I think everyone should see:

[jb1964]

Hi,

 

Sorry to post this here - but this topic is really interesting although I'm totally confused regarding this ASD vs. AS thing.

 

My daughter has been diagnosed ASD with AS best describing her difficulties (mainly because she is extremely bright - their words not mine - and also because it is more helpful coming from a professional angle i.e. teacher/gp/dentist etc) - she was diagnosed at 12 - we have only told the school and our gp/dentist etc and just said that she has AS. She didn't have speech delay in fact more the opposite her language and vocabulary were very 'grown up' although all her development since birth has been described within the stuff I've read on ASD/AS and her difficulties have become more apparent the older she gets, i.e. her co-ordination became more obvious, her sensitivities to smell, touch and taste etc, and especially her communication, understanding, frustrations and aggression etc - instead of just being told she's 'stubborn', or 'challenging', 'clumsy' or 'fussy' and so on......

 

I know I'm at the risk of sounding totally stupid here because I'm so confused over some of the postings (not just on this thread though) I thought that Aspergers (or AS?) was an Autistic Spectrum Disorder (or ASD?) and would therefore assume (?) that AS could at different stages/development etc envelope almost everything within that 'ASD' umbrella .......and that really at the bottom of it all they were one and the same - albeit to different varying degrees (obviously).

 

I know I've also been confused over the use of 'mild aspergers' or 'mild autistic disorder' - and have just assumed now that when people quote this 'mild' they are meaning that at that given time the persons anxieties, stress levels, understanding, frustrations etc are at a low scale because there is perhaps less things around them at that particular time, ie. no school, not having their hair washed, not anxious or worried about something, their obsession is fulfilled and happy at that given time, not having to leave their 'happy space', routine hasn't been changed, you have no visitors etc etc.

 

Also, I know this must sound really really stupid again - but I really am confused about all this - is 'Autism' or 'Autistic' a diagnosis in it's own right. I guess what I'm trying to say is that when someone posts that they/someone has been diagnosed 'Autistic' or they say they have 'Autism' is that a separate diagnosis on it's own to being diagnosed ASD? and if yes what is the difference?

 

To be honest my daughter went through months and months and months of consultations prior to this diagnosis - spending one whole day per week at the unit (CAHMS) and one visit to the home for 1 or 2hours during all these months and at the end we were just left with the diagnosis as said above and basically to read up on as much as I could read - because of her age there was no support - other than for my daughter to receive home visits from the CPN to try to help her come to terms with it and self awareness help.

 

I've have since read quite a lot of books and watched Tony Attwoods DVD as well - but from everything I've read Aspergers seems to encompass almost everything within the Autistic Spectrum Disorder 'spectrum' to different degrees - and after talking with the consultants at the time - they just said yes that X or Y is part and parcel of the ASD/AS etc i.e. limited understanding, frustrations, aggression, communication and social difficulties, her sensitivities, her poor co-ordination etc. etc. and in turn this all leads to her obessive behaviour or her anxieties or her depression or her aggression or X or Y at any given time depending on her situation. Yet I know that posts I've read on here people seem to have different names for different symptoms that all fall within this massive spectrum.

 

I'm just so confused.........

Edited April 13, 2007 by jb1964

[BusyLizzie100]

You're right, jb1964, it is confusing, and it's not made easier by the fact that different professionals use different terminology. I'll try to clarify from my own understanding:

 

The term autistic spectrum disorder (ASD) is a term that covers anyone who is considered to be on the autistic spectrum, which if you like is an umbrella term that covers everything autistic. There are numerous subgroups or different terms, some of which have their own diagnostic criteria, eg Asperger syndrome (AS). Some of the others are autism, classic autism, Kanner syndrome, core autism, high functioning autism (HFA), pervasive development disorder (PDD), pervasive development disorder not otherwise specified (PDD-NOS), semantic pragmatic disorder...

 

Lorna Wing coined the phrase autistic spectrum and identified the triad of impairments - social interaction, social communication and social imagination - as being essential for diagnosis of autism to take place.

 

People with AS also present with the triad of impairments - they still have autism - but the diagnostic criteria for AS has some subtle differences, mainly in the areas of good intellectual ability and structural language skills. (Some diagnostic criteria for AS require co-ordination difficulties also.) Hans Asperger himself referred to the boys that he studied as being like little professors, because their language sounded so mature and advanced; however it's the use of language both verbal and nonverbal where problems are often experienced.

 

Sometimes professionals use terms such as autistic traits, autistic behaviours or autistic tendencies to describe people who appear to have 'autistic' difficulties but do not have the full triad of impairments and sometimes a dx of atypical autism is used when a person presents with just two of the triad of impairments. In any case it's argued that such people benefit from being treated as if they had autism anyway.

 

People with AS are frequently diagnosed later than others on the spectrum as their difficulties can be well hidden for some years; often it's when peers develop social skills etc and the child with AS seems to get left behind and starts to have greater difficulty coping that differences start to come out.

 

People can move up or down the spectrum, which can make their autism seem less or more severe; that often depends on how well they are supported, what input they get at an early age and on how well they are coping living in what to them is a confusing world. Sensory overload can also have an impact.

 

As far as I'm concerned, and I may not speak for everyone(!) but there is no such thing as 'mild' autism or 'mild' Asperger's. You either have it or you don't. If it appears to be 'mild' at any given time, that may be because the person is coping particularly well or has strategies that really help. My eldest son is 9 and has AS; most of the time he appears like any other typical 9-year-old boy - after all, he has no physical symptoms - but put him in a room with his peers and the situation always breaks down after a while because he just hasn't got the same social skills or language skills - he could talk the hind leg of a donkey but he doesn't get the to and fro of conversation etc. He can have a meltdown at any time if something triggers him.

 

My second son, by the way, is 7 and has a dx of ASD. He has more extensive difficulties with language, social understanding etc - that is, the triad of impairments are more obvious in him - but both boys can display extremely challenging behaviour on account of their autism, whether AS or ASD! If I'm ever in a situation where I have to explain their difficulties, I say they both have autism; it depends on how much knowledge others have as to whether I mention AS.

 

Phew, that turned into a bit of an essay. Sorry about that! thanks to all those who managed to read through it!!

 

Lizzie xx

Edited April 13, 2007 by BusyLizzie100

[Lucas]

The problem with terms like 'mild' and 'severe' when used with Autism and Aspergers is that they imply frustrations, stress, difficulty and struggle are implicitly caused by the condition itself, ergo it's the condition that's the problem. It's far more complicated than that and as Autistic teenagers start turning into adults they often realise these things are in fact part of their make up: blame Autism for anything and the Autistic is being blamed, they're indistinguishable.

 

Autistics score consistently higher than non-Autistics on the Raven's Progressive Matrices intelligence test; how come a high score on that is not considered 'severe' Autism/Aspergers? Why is it always the negative things that 'mild' and 'severe' are judged by?

[Bard]

I've got two children, P, very able NT daughter of 16, and B, an average AS boy of 12.

Given a choice, much as I love them both, I'd rather go to new places with B.

He notices everything and absorbs details that would have passed me by. He loves old stuff, museums, art galleries, nature and the countryside. He is able to think and discuss what he sees with intelligence and thought.

I learn so much being out with him, and because he's usually plugged into the History channel. he can remember and share all sorts of details. He is an absolute delight to be out with, doesn't whine or ever get bored. Provided I don't make him mix with children, he is able to be himself without stress.

He has the makings of an academic, like his dad. He may end up in research or analysis or...who knows.

AS is part of him, and I really enjoy the person that he is.

Most of the stress in our house comes from having a teenage girl and a 12 year old brother in the same house at the same time. The things we struggle with are bodily functions, choosing to wave sister's bra over his head, and the fact that when she is offended, she screams like a steam whistle which he finds funny.

That's not AS, that's being a pain in the *rs* sibling.

No arsenic in the soup yet, but I'm watching her carefully!