My baby's gone for 4 nights!

[Flora]

Ben's gone off to Osmington bay with the school for 4 nights this morning.

 

I was thinking back to two years ago when Bill went on the same trip and what a huge difference between my two lads. Bill was terrified and didn't want to go, and when he did go he didn't like it, Ben on the other hand has been up and dressed since the crack of dawn and couldn't wait to get rid of me when I dropped him off with his bags.

 

When bill was first dx and I was just learning about AS and autism etc, I used to tell me people he had 'mild aspergers' . I know better than that now, not just in it's inaccuracy relating to bill but in it's portrayal of AS in itself.

 

I was reading through a thread which had sparked a minor debate over the use of the word 'mild' when describing autism or AS and it made me really look at the difference between my boys.

 

Ben was much more 'severe' than Bill in the early years. He couldn't talk until he was nearly four and even then it took another 4 years for his language skills to develop to a level where he could actually have a conversation! All he did was echo, stare into the washing machine and spin the wheels on cars. He was dx with Semantic Pragmatic disorder, specific learning difficulties and autistic tendencies.... that has now changed to autism, in which as a youngster he was moderate to severe. BUT (yes there's a point to this rambling) he now copes with life and school much better than bill ever did. He has obsessions but they are variable and often fruitful (latest obsession is reading and aeroplane engines). He has odd social skills but he is so funny and cheeful he is very popular and has a good circle of friends. The point I'm making is that Bill is much more 'disabled' by his AS than Ben is by his autism. For anyone thinking that AS is a mild form of autism they need to think again. Of course this is just my own humble experience with my boys. Everyone is different and I've personally struggled through my life with AS but would never describe myself as disabled; dysfunctional and odd but not disabled . I haven't bothered applying for dla for Ben because he doesn't need it, whereas Bill most certainly does. Just thought it was an interesting observation after reading so many discussions on the use of the word mild, especially relating to AS.

 

flozza

[Mumble]

Thanks Flora,

 

I hope Ben enjoys his trip.

 

That's a really interesting observation. I think I'm guilty of reigniting (sure that's the wrong spelling and the wrong word) the 'minor debate' into 'mild autism' for which I have been suitably chastised!!

 

I think it's so, so difficult. My brother has 'severe' autism; I have AS. Am I therefore milder? I'm not convinced at all by that - I think it has to relate to effects on everyday functioning (as someone said in the 'debate') but I'm still confused - my brother (and this may sound cruel - I don't mean it to be - he's older than me and this is how things were) is not expected to 'function' - he is institutionalised and has everything done for him (and seems unaware of anything different). I am expected to function 'normally' (whatever that may be).

 

So, in relation to our 'expectations' I'm further from mine (my brother has no expectations placed on him and lives up to this, I am expected to be 'normal' and try but fail in some circumstances), but in relation to the 'norm' as in NT my brother is of course further from this. I'm not sure where norm-referencing gets us in this case.

 

I think it's more a case of different forms of autism played out in different ways and causing different difficulties in different circumstances. Or something like that. I've confused myself now!!

[bid]

Thanks Flozza...that's a really good insight into a thorny issue!

 

Bid

[Suze]

<'> .........so pleased he ,s excited about his trip."Odd".......is definitely the correct term : devil: .........for you.... (love ya really)Hope things are ok for you at the moment how,s the statementing going??Hugs suzexx

[Flora]

Suze, aaaaaaaagh, don't mention the 'S' word The best way to describe it is as a boil, which has developed and pustulated (great word, did I make it up?? ) over a long period of time and is almost ready to explode!

 

The LEA, in a not at all subtle effort to delay the inevitable, decided to recall the autism outreach teacher to re-assess Bill and make yet another report. He came last Wednesday to see us and said he'd file his report 'in about a week'... I wanted to scream 'why not tomorrow? Why don't you sit up tonight and write it straight away? then deliver it by hand at 9am tomorrow morning?' ... but if there's one thing I've learned throughout this process it is patience! So I just smiled and said 'fine, the sooner the better though'. I don't like it, but people go at their own pace and no amount of jumping up and down can speed them up. The solicitor is also threatening a judicial review of the whole sorry process unless we have a finalisted statement by the end of next week

 

Flozza X

[oxgirl]

Hiya Flora,

 

Yep, I know exactly what you're saying. I know a couple who have twins, a girl with severe autism and a lad with AS and they always say that it is their lad who has more problems and it is him who's future they worry about more. As Mumble says, he is the one expected to cope on his own, they know their daughter will always be looked after and, in some ways, shielded from the big bad world to some extent. Their girl is very happy and content in her world and is good at looking after herself, has good practical skills and their lad, although he is verbal, is a bundle of anxieties and worries, and needs so much more input and help in many ways. It just begs the questions, I suppose, of who is actually the more 'disabled'.

 

Hope Ben enjoys his trip. <'>

 

~ Mel ~

[pearl]

All these posts have struck a chord with me, I can remember when JP was first dx'd I went to a support group where there were many parents of severely autistic children, & I felt I couldnt possibly complain (no one ever made me feel like that, I just thought, how can I whinge about him going on & on about something when parents of the non verbal kids would give their right arm for that problem, etc, you know what I mean)

 

But its like you all say - if you know your child is severely autistic you know to some extent that they will never work, will live in sheltered accommodation, will need specialised provision when making financial plans for future etc.

 

Children with AS have a completely different set of expectations, by & large they are expected to function "normally" in an incomprehensible world, hold down a job, interact etc. Its a much greyer area - some cope well, others cant work, some can only work part time, looking to the future its hard to predict how our children will fare.

 

And I too have called JP's AS "mild" - not because I agree with that, but because when seeking to reassure someone like a potential employer I cant think of a better way of describing it briefly & in a way they can relate to. If anyone has any ideas about this I'd be grateful!

[Bagpuss]

Flora, hope he has a fab time

 

What a really interesting thread. I'm unsure about the use of "mild" too. I've always described our eldest dd as being subtlely (sp?) affected....but unsure if that is actually a fair way to describe it. Our eldest dd paediatrician has described her diagnosis as mild aspergers in the report we received afterwards. I thought what Mumble said about having to function, whilst her brother was not expected to, was really thought provoking. I hadn't viewed it this way before. I do view our eldest dd as being far more able than our youngest. I imagine her being independant, having a career..................yet our youngest dd, who is autistic......well, I don't have those expectations. I too, like Flora, have claimed DLA for our youngest dd, but not for our eldest dd. I had never thought about the fact that our eldest dd may find life more difficult, because she will be expected to be independant, to work, to support herself, while our youngest will always be cared for by DH and I. I always felt it was youngest dd who would have the most difficult life.....now I'm not so sure.

Edited September 17, 2007 by Bagpuss

[Wardie]

J went sailing on the Isle of Wight today for 4 nights - I jump every time the phone rings! fingers crossed!

 

Thanks for the insight to the differences between autism and AS. I'm still learning, these debates (mild or otherwise ) really help understanding.

[smiley]

Hope he has a fantastic time flo'

 

For me - i try to not think too much about the 'label' AS/Autism/otherwise whatsit.. I know & have worked with a lot of children and adults who are dx'd with autism in one way or another - each very different - each with very different strengths n difficulties. M has a dx of Aspergers and me of HFA.... People assume m's dx means he is less affected or has a milder form of autism. Then they meet him.............. and see how difficult day-to-day life is for him. People who know of my dx and then meet me - assume i will be very different to how i am............ Different strokes for different folks n all that!.......

 

Anyhow! Try not to sit next to the phone all week (i know i would!).

 

<'>

[Mumble]

Thanks for the insight to the differences between autism and AS.

No no no - that's not what I was saying at all. In fact I describe myself as autistic (yes, you can start throwing stuff at me now ). My difficulty is with saying that AS is a mild form of autism in relation to the assosiated assumptions that the implications for daily living are milder. I don't think they're milder, I think they're totally different. To me AS and HFA, at least in adults, are essentially the same thing - after all, the only difference in the diagnostic criteria is speech delay in HFA and not in AS. I recently read of AS being described as a 'pure form of autism, i.e. autism without accompanying learning difficulties' - I think that seems ok, though I'd want to think about it further. What I can't decide, for instance, in my brother is whether it's the autism per se or the accompanying learning disabilities that lead to the lack of expectation - his LDs are never mentioned - he's always described as autistic - but I just wonder (I seem to do a lot of that . . .)

[Bard]

I recently read of AS being described as a 'pure form of autism, i.e. autism without accompanying learning difficulties' - I think that seems ok, though I'd want to think about it further.

 

I think that's an interesting thought to muse upon.

I'd say that B has no other learning difficulties, or other comorbids. Which is why people often struggle with the idea of him needing any form of support or modification to the way things are done, and why they are suprised at some of the issues that arise.

[Wardie]

No no no - that's not what I was saying at all. In fact I describe myself as autistic (yes, you can start throwing stuff at me now ). My difficulty is with saying that AS is a mild form of autism in relation to the assosiated assumptions that the implications for daily living are milder. I don't think they're milder, I think they're totally different. To me AS and HFA, at least in adults, are essentially the same thing - after all, the only difference in the diagnostic criteria is speech delay in HFA and not in AS. I recently read of AS being described as a 'pure form of autism, i.e. autism without accompanying learning difficulties' - I think that seems ok, though I'd want to think about it further. What I can't decide, for instance, in my brother is whether it's the autism per se or the accompanying learning disabilities that lead to the lack of expectation - his LDs are never mentioned - he's always described as autistic - but I just wonder (I seem to do a lot of that . . .)

 

Sorry, I was joking about the 'mild' bit. I really should have thought first. I did understand you and appreciate the insight from someone who lives with autism / AS.

[baddad]

Hiya flozza -

 

Hope Ben has a wunnerful time in osmosis bay, and that you make the most of the it too...

S'funny, ennit, how you relish the prospect of a break but miss them as soon as the doors shut?

 

L&P

 

BD