"make me normal" Ch 4 Thursday

[bunny2]

tv programme about teenagers living with ASD

Todays Indie gave it a good write-up.

Message withdrawn

Message withdrawn

Suedonim - yes, Moneer had Aspergers.

From the Autistic group we visit and the way my ds behaves, the smacking of the head - and even the way it is done - seems quite a common trait.

I read the interview in the Radio Times which said they really had to consider very hard whether to include the girl hitting herself, but her mother agreed and said that it would be showing her daughter as she really is.

across the spectrum chocl8- as ds1 smacks his head in just that way as well.

Sorry, yes Jimjams, I mean across the spectrum - there are alot of children at the group all with different dx's and traits, but the hitting head thing seems a common feature. My ds who is AS does this very frequently.

I can't comment on what was shown in the prog, I only saw a little which prompted DH to bellow "autistic, them? They're not autistic"
But I do know that self injury has been researched to show that the "sites" of injury and the part of the body used to inflict the injury very often follow a pattern, such as forearm to forehead, hand between thumb and forefinger etc.

RnB - What do you mean by what did I mean???? I said that my personal view was that I could not see the autism in her, I really couldn't. That was my view and I don't see why I should have to explain what I mean.

Ds2 hits himself when he is angry and enjoys a good old headbang too. Ds1 has never really been into hitting himself although he will happily hurl himself to the ground from great heights.

When I was watching Roxanne I got the feeling that she had probably been dx'ed quite late. IMHO she was definitely AS/ASD but I suspect that it had gone unnoticed for a long time.

This is a sensitive area as some of us have autistic children just like Roxanne...so saying that she doesn't look autistic could be a problem...My boys thankfully do not harm themselves....but having loitered when dropping them off at the autism holiday club they go to i have many times seen other 'roxannes'.

It's also a bit like people who meet my eldest and say he doesn't 'look like he has ASperger's or ADHD'...well he's usually under the effect of his ADHD medication at those moments...so is able to be calmer....and since he was 4 i have used 'strategies' to help him integrate.... and certain that i am AS to some degree...i know how i learnt to 'compensate' to conceal behaviours i had.

As i said i see ME in roxanne...but luckily i did not hurt myself so much as a child....

Christie, I understand your explanation on on the exclusion - point taken.

Davros, I can't really understand the comments you made in your in your posts about the programme being so far from autism and your DH saying that the children were not autistic!

You may only have your own experiences of what autism is, but please don't be so ignorant in thinking these children do not have autism. They have obviously had a diagnosis to be in the school in the first place. You obviously have not seen autistic children like this before, or you would not have made these comments!

Your comments deeply offend me, as my DS is high functioning and this is what autism is for us. Life is really tough for my DS too!

This is a very broad spectrum don't forget, no two children are the same!

sandymogs- Davros said it was far from autism as she knew it (which is what I felt as well). We're aware that children with HFA have problems, and that they can be extensive, just different (and as I said in an earlier post I felt pleased after the prog that my son doesn't know he has autism- although I suspect he knows that the world is strange for him).

Funnily enough Roxanne was the one child I felt was most like my experience of autism. Perhaps becuase of the way she hit herself. The way she did it was exactly like ds1. I remember the first time I met another autistic child, she used my hand to indicate something in the same way as ds1 and I was blown away- there's something about those shared odd movements that connects.

I was very taken by Roy as well. He was trying so hard, but stll had such a long way to go.

Yes jimjams, they appear to be different in many ways. Having been involved with and known so many children on the autistic spectrum over the years, I am aware of the differences in ability of these children. That does mean any one end of the spectrum has it harder or easier than the other, I know your not trying to say that.

Even though my DS is HF and verbal, he has so many autistic features which you could call LF, if the word functioning is comparing abilities with the neuro-typical.
He too is like Roxanne, but hits his forhead when he's stressed, It's heart breaking to see your child permanently bruised!
As DS is verbal, it's very hard for the general public to understand, especially when you in the middlle of Tesco and DS throws a wobbly because they've moved the counters around from the last time were there. He starts shouting and swearing at me and people just stare muttering under their breath, thinking he's just a naughty child. It's only when DS starts hitting his forhead do they look the other way!

I have all to often met parents of children with classic autism, who have not seen children at the other end of the spectrum before. So maybe this programme has raised awareness, not just amongst the general public but amongst parents of autistic children on the whole spectrum too.
I do think the programme could also have shown children at both ends of the spectrum, to have shown how broad the spectrum really is. I also think the programme should have explained what autism is and what was happening to the children to make them behave like this in the first place.

I also added how difficult this must be for Roxanne as on the surface people really couldn't see it. With Roy it was far more easier to see IYSWIM
I completely 100% understand how frustrating this can be as all though my dd doesn't have an asd as such it is very similar and I too have the same thing that people cannot see what difficulties she has. It is an invisible disabilty after all. I wasn't trying to be horrible but sympathethic and if it didn't come across that way then I do apologise. Anyone that has read my posts will know that my dd has communication difficulties that affect our lives on a daily basis. I have been coming on this board for over a year now and if people cannot accept that I am just being honest and saying how I feel then I am deeply offended tbh. I would never ever say anything to hurt or offend anyone and the point I was trying to make the point that I could see it must make it so hard for her family. People without the knowledge of the spectrum and who only think of the stereo typical rain man would never categorise Roxanne as autistic but probably just think she has a behavioural problem.

Sandymogs, I don't think you could have misunderstood me more if you tried. Just from the posts on this thread maybe that was a risk but if you knew me from MN in general then you wouldn't have come out with this conclusion. I really, really do understand that people at other parts of the spectrum to my DS have REAL problems but they are different and I know LOTS of kids and parents whose children are on different parts of the spectrum. In fact I often find it tricky when "newer" parents say things like, "if only my child were HF, could talk, had more awareness" etc and I really think "well, those kids and their parents have huge problems, they're just different and being hf or being able to talk doesn't make it alright". I have posted in this vein many times before on MN. I mentioned what DH said just to show that he doesn't have much experience other than our DS but I DO and if you knew me from MN you would know that. But this program didn't show ASD as we know it and I don't see what's wrong in saying that.

I was the person who first posted on MN that this program was going to be on as I am very involved in the autism community including helping a lot of parents whose children are everywhere and anywhere on the spectrum.

Message withdrawn

RnB - Where does it state that I said Roxanne doesn't look autistic????

I am entitled to my opinion, that's what a public forum board is about and who are you to tell me how I should feel? I know lots of children with asd and I have never seen a child present in the way that Roxanne does. I am entitled to say that as that's how I feel. I have a child with communication difficulties that affect her/our lives considerably. Please give me some credit to know that children do not have to look different to be disabled/have special needs.

Tbh RnB you are obviously looking/digging me out for an argument and I have far more important things to worry about.
Enough said!

The lack of appropriate social communication skills was portraid very clearly in Roxanne. Anyone with an understanding of autism will have recognised that! Can you honestly say BH that you could not see the autism in her, even when she is uncontrollably hitting her head?
I'm sorry, but you need to do a little more research on the subject before you make comments like that as you are only showing up your ignorance!!!!

Message withdrawn

Steady on Sandymogs- I don't think BH was trying to be offensive she has said she was sympathising. TBH I know far more HFA children than LF. There are more HFA around for starters!

RnB I think people do expect autistic children to look a certain way. My son looks so "normal" (far more normal than Ray or the girl with glasses to be honest) that people really struggle to understand his problems. He can be making weird noises when out and about, hitting himself, doing weird auti stuff and still he looks normal (just as if he is behaving very oddly). For some reason this normal look means that people can't make the leap to see that he is disabled. I mean one guy even watched him for 2 hours on a ferry freaking out, when I would say his behaviour was so far from the norm than anyone should have been able to see something was going on (and of course he didn't speak once in that time, not did he look at any of the childrens entertainment he just ran around, rolled on the floor and screamed a lot) and still, still still after 2 hours of watching this a stupid man (sat with 2 young children so he should have recognised normal behaviour) thought it appropriate to look at him, then look at me, tut and shake his head. Looks normal, so what could possibly be wrong with him other than a ropey mother.

RnB I suspect you have the same problem. I thought it would get easier as ds1 got older, at 6 I would have thought it was obvious to all, but unless I practically wave a PECS book in someone's face (or wear my pecs apron ) its still missed.

Sandymogs - I stand by what I say, I couldn't tell that it was autism that was affecting roxanne. It was obvious she had special needs, yes but I personally could not see that it was autism affecting her. Am I not allowed to say that if that's what I felt.

RnB - I felt you was belittling me by the "wasn't it the fact she was hitting herself and had no friends?" I mean that was just an insult to my intelligence to be honest.

Anyway I think it's best we all agree to disagree on this one.

Oh and thansk for sticking up for me Jimjams, means a lot x

Message withdrawn

Message withdrawn

RnB I say that ds1's special talent is spotting a washing line from 500 yards