Feeling Frustrated

[dayle1]

My 10 year old son was diagnosed with Asperger's about 18 months ago. What frustrates me is that everyone keeps saying "he's only mild". He is a clever boy good at maths and science like many others and he's currently doing well at school. But he still struggles with social situations. When we are with NT kids something always goes wrong. In public he quite often behaves inappropriately especially if something doesn't work out the way he wants it to. So when people say it's mild I feel very frustrated and don't know what to say. Does anyone else have this and feel like me?

[jb1964]

Hi Dayle1,

 

I can understand your annoyance. I really get frustrated at people using this term - to me someone is diagnosed as AS or not - and then at any given time their anxieties, stress etc can be better or worse.

 

I cannot understand how anyone can have mild AS. My 12yr old daughter has just been diagnosed ASD - fitting the specific criteria for AS - no more, no less.

 

Take care,

Jb

Edited May 8, 2006 by jb1964

[lizzie]

Hi Dayle, I understand exactly what you mean, my 11yr old son has AS, on the surface at a glance, he looks like any other 11yr old, he too is good at maths and other stuff, and his condition has been called 'mild', (but only by people not qualified to say!) there is nothing 'mild' about his violent outbursts and destructive aggression!! Yes it is very frustrating, at times it breaks my heart, Other times it makes me soooooo angry!! Take care Dayle x

Edited May 8, 2006 by lizzie

[justamom]

Yeah, i have had this disagreement many times with people even hubby agrees with the statement of mild aspergers. I on the other hand dont agree with MILD, you cant really be MILDLY pregant or downs etc etc???? His argument is that with certain illness/syndromes there are varing degrees and therefore mild does exsist... We agree to disagree on this one....

 

AS is a hidden disabililty and my son also looks "normal" but on closer inspection we can see the difficulties he has...

[lisann]

Hi All

 

Can totaly understand the frustrations of you all, C was diagnosed with ASD in 2004 and all I hear from school is how mild it is.How mild there is nothing mild about him at home yes he fits in with the routine of school but no he doesn't play with children no he isn't reading like the other kids and the min he comes out of school all hell breaks loose.How can anyone who doesn't have to live and cope on a daily and nightly basis quote how mild our children are. It makes my blood boil.

 

Lisa x

[Mummy21]

Even though I will echo all the previous posts I have to have my say too....... LOL

 

My son is 8 and we are waiting for dx for AS........ every 'professional' says he is mild, but I too disagree there is such a thing......... someone once said to me a month or so ago when I used this phrase (as it had been drummed into me by school) that a child either has AS or not and it is down to the level of stress and anxieties that child is feeling at a given time and place to how noticable it becomes........ when J is in school he is so conformed that he hardly shows any characteristics, it is when he is at home or out socialising that the AS becomes more apparent.

 

So basically in answer to your question, yes I get this and yes I definately feel like you........ thankfully though thanks to this forum I am beginning to realise I am not alone.

 

Joanne xxx

[Mummy21]

I have just looked for my first post to see whos words of wisdom it was who made me realise there was no such thing as 'mild' and I see it was jb1964 LOL

 

Just wanted to add a big THANK YOU to Jb, you made me see so much better xxxx

 

Joanne xxxx

Edited May 9, 2006 by Mummy21

[kirstie]

Oh yes do i agree with this one. My son is great at Maths and seems to thrive on his school work so much so his unit are wanting to move him into mainstream Primary class. not on your nellie. He has terrible fears (his lunch is the main one at the moment) and will kick off and fight you with the strength of ten men. There is nothing mild about that. He, like many of our kids is very socially akward and domineering will kick off if things don't go his way.

[BusyLizzie100]

I agree with all the above especially Mummy 21: 'a child either has AS or not and it is down to the level of stress and anxieties that child is feeling at a given time and place to how noticable it becomes.'

 

My son is eight, he copes at school by hiding his stress and lets rip at home - frequently before we even leave the school grounds, but of course none of the teachers see.

 

I feel that his stress and difficulties are building as he gets older - the other kids are developing in a 'well-rounded' way and he is being left behind in areas of social skills, communication, emotional behaviour etc, although he has a very high IQ. I feel he's a bit like a ticking bomb.

 

So it REALLY irritates me when his teacher puts on his IEP 'Asperger's, mild' - I don't know where she got that from, because his dx is AS. If anyone says 'mild', I put them right ASAP. It just worries me that if/when we apply for statutory assessment, the word 'mild' will be bandied about in this inappropriate way.

 

I get it about my ds2 as well, who has a dx of ASD. Both boys seem 'normal' at first glance and ds2 is a little darling at school, but that doesn't stop people staring when one of them kicks off in the street.

 

As a matter of interest, do any of your 'mild' AS children get support at school; if so, what kind?

 

Lizzie xx

[CarerQuie]

My son sounds similar to yours.It was suggested that he be put on a learning disabilities inclusion project.We said NO and guess what?The funding for the project has come to an end!!!xx

[Bagpuss]

Hi,

 

I can understand why using the word "mild" isn't appropriate. During the Early Bird Plus course last week we were discussing "the spectrum" and how some children were much more difficult to diagnose than others. This was being discussed because all our children had been diagnosed much later, and it was assumed that was because they weren't "severely" ASD, as stated by Ed Pysch who is taking course. Iknow my daughter confused many, many professionals. Some saying she was ASD, others disagreeing. Often it were those who spent the least time with her that felt she was not autistic. I can see a vast difference between my daughter and someone with "classic" autism, but I still would not say she was "mildly" ASD. She has a whole host of difficulties with social interaction, communication and challenging behaviours......infact I've recognised her so many many times during the Early Bird Plus course Sometimes this is so difficult because she "appears" to be ok Not till you spend a good deal of time with her do you notice the repetitive-ness of everything she does and says....its like Ground Hog Day sometimes

 

Debs x

[board]

hello i was just wondering when they told us about our daughter 6 they said she has aspergers she ticked all the boxs they didt say any thing else so what dose that mean jill

[pepper]

wanders in to say *whilst pulling hair out* Sons specialist at the child developement unit ( and no i still dont have a clue what they really do there.......?) reitered 'VERY MILD Aspergers' I know he wasnt dxed till 11 - but hes always been 'different' I just chalked it down to him being very academic and people always banged on about him being 'a little proffesor' *Clang clang* I didnt pick up the obvious )

 

As far as support for him, I'd have to say no. He has an iep thats only any use for toilet paper, and is only of use after an event when I can mention he HAS AN IEP but basically a quarter of his teachers make auto adjustments to make his life easy - the ones he doesnt have personality clashes with.....

another quarter - he gets through with no help just because he likes the lesson, a further quarter he struggles and gets pulled daily for not working in class or lack of homework . The remainder quarter appear to loath my child with passion and make those lessons a living hell, saddling him with constant detentions and singling him out ( and no - im not teh sort of parent that ever presumes my child is a sweety of a kid)

 

He is coping fine in school enviroment at moment but thats probably because its options year and hes focussing on dumping the subjects with the 5 vile teachers.......... I do understand that his nature can appear abrasive, sometimes maybe rude, but that isnt a product of upbringing, its part of his syndrome * beats head on wall*

 

We have checked who is teaching him in various subjects next year so he may adjust better into next academic year and without those 5 wonderful teachers who make so much time for him i think his school life could be a different story. His science / IT and Math teachers have no problems with him, I dont know if this is because he adores those subjects or wether they adapt their teaching to help him? I know the physics teacher certainly does ( infact she defended and protected him from the biology teacher who was being petty and after 'a little chat' all seems well)

 

I think if you are very vigilant - most schools will keep a closer eye and offer more help - Im still trying to get it through to sons school that asking if he is alright daily wont help as he always answers that everything is good! LOL Im lucky that school mentor seems to have decided to take child under her wing and he likes her - last week son froze during SATS paper and wrote nothing in 45 mins, she managed to avert a meltdown by calming him and taking him to her office. If she hadnt have done i'm sure ih have had a totally hyserical child by eveningtime. But if the school dont give enough support - they wont get the best from the child. I often have this horrible thought in the back of my mind that if my son wasnt top of year in a few subjects, wether they would show as much interest in geeing him up when his grades dip ( then I feel a right mean biatch for thinking that.........but you do dont you? )

 

I AWAYS write monologues Maybe I should post 'little and often !!' and try staying on topic too...

 

xx pep

[Suze]

...............yep MILD..........does my head in also ,

[Tez]

A's Consultant wrote a letter to the school SENCO who suggested to her that A had no real problems because he had a dx of AS which in the SENCO's words means he's mildly odd with no real difficulties that couldn't be overcome by trying harder to get on with people. The Consultant told her that whether a child with autism was high or low functioning bore little relationship to the severity of their condition and that in her opinion A was severely affected by his autism and was unable to live a normal life because of it, which meant that he was severely autistic despite his normal appearance and high intellect.

[jb1964]

A's Consultant wrote a letter to the school SENCO who suggested to her that A had no real problems because he had a dx of AS which in the SENCO's words means he's mildly odd with no real difficulties that couldn't be overcome by trying harder to get on with people. The Consultant told her that whether a child with autism was high or low functioning bore little relationship to the severity of their condition and that in her opinion A was severely affected by his autism and was unable to live a normal life because of it, which meant that he was severely autistic despite his normal appearance and high intellect.

 

Well Tez with SENCO's like that what chance do we have of everyday people who have no knowledge understanding.

 

Jb

[OPooh]

Yes I too know this one

[dayle1]

Thanks for all the replies. I like this forum so much as I can relate so well to everyone - it's good to know I'm not alone. Thanks everyone.

[lisa35]

Thanks for all the replies. I like this forum so much as I can relate so well to everyone - it's good to know I'm not alone. Thanks everyone.

Hi, ditto for me too, my son 1s 10 and awaiting further assessemtnfor mild "traits"- infact one professional told me the fact tjat it is "mild" will make things harder cos his difficulties are so subtle!

Im currently writing a profile for schoool of what helps/ hinders him cos they seem to have v little understanding of asd- he has an iep- but it s so vague

We were told he d never get a statement cos he s too clever- above average iq,etc. But surely social issues are just as , if not more imprtant!!!

Lisa

[Kathryn]

Hi dayle1, and welcome to the forum, by the way

 

Yes I can relate to this too. When my daughter was diagnosed exactly two years ago with AS, none of her teachers could really believe it - they all said "well IF she has it, it's only mild"..

 

As others have illustrated, it's such a damaging little word when used in an educational context, as it carries the implication of "not severely affected and therefore needing no help".

 

K x