Film about autism and MMR

[Jimjams]

On Dec 15 on channel 5 there is a film about autism and the MMR. it's called Hear the Silence. Apparently -even if you;re not enamoured with the MMR storyline- its a pretty accurate portrayal of life with autism in the family (oh heck!) I've seen the word "harrowing" used. Apparently you need lots of hankies. My friend's (from email) son is in it. 4 years ago they said he wouldn't ever talk and now he's been in a film- absolutely amazing. i can't wait to see it. MrsF - remind me please :-)

The woman from truly madly deeply is in it as well- she plays my friend's son's mum.

I said I don't care if its biased because I don't and I was being honest. Media coverage of the MMR is biased, (and everything else if you ask me, that's why I DON'T read newspapers at all).

Oh and by the way I also wasn't saying you don't care about autism. Why should you? I was fascinated by autism before I found out about it, but did I care about it? No not really.

All I was saying is that if you watch this film you will understand the fuss. Because the advertised line is "if you don't have MMR your baby will catch measles and they will die" people think "oh I'd far rather my child had autism - what's such a problem with having a child who can calculate numbers in their head". I'm not syaing you think that I'm tlaking about society. If you watch this you and anyone else who watches it may realise how truly horrible it is. And just how awful.

Oh and that last message wasn't meant in a pitying feeling sorry for myself way. It's just a fact. Autism is horrible, but not many people realise how awful as it is presented in a quircky way. I look forward to seeing it in its awfulness.

Thanks for the offer of the video Davros- may well take you up on that.

When things like this are discussed i often wonder how many of the experts who make the decisions that affect so many lifes- and make us parents who have 'gone against their advice' feel guilty have actually had their lives touched by autism? And would they be so sure if they had a child like in the film that 'changed' after the immunisation???As i said earlier in this thread i have 3 boys - 2 on the spectrum and a 3rd sitting on the edge- which way will he fall....noone can say....but do i dare risk 'triggering' whatever it is that may or may not happen......or do i spend the rest of my life loving the way he interracts,plays imaginatevly and countless other things his AS brothers cannot do without help- despite him being years younger- but risk him catching measles etc????

hi jimjams, have been meaning to come back to you for a few days, have been busy and this is a difficult one to respond to.

as far as the film goes, i think it could make a case very persuasively without resorting to lunacy. did you see the critique of oliver stone's "JFK" recently as part of the Kennedy 40 season? it makes a very persuasive case but is apparently nonsense. i'll have to watch now the autism/mmr film now, won't i?

do you really find people are so ignorant about autism - they perceive it as a cute idiosyncracy? now, my knowledge is not fantastic, but i assure you i know that living with a "bad" case day to day would not be "cute" or easy in any way.

i agree with you - in order for parents to take a "balanced risk" approach, they must understand the impact of what they are risking, i.e. how bad autism can be. however, the other element of risk management is the probability of occurrence and obviously this is where the wakefield v. doh anti/pro mmr debate (to simplify) comes in, and where we disagree. incidentally, i've just reviewed the doh page and it doesn't say it's 100% safe...

in terms of pitying or feeling sorry for yourself, your message didn't sound that way, but i wouldn't blame you if you did feel that way. as i said, way down this board, i don't think i could cope with a "christopher" (i.e. from curious incident) let alone a more severe case.

your original message made me rather cross as i felt you ascribed to me feelings/opinions which i don't share/agree with - even if many people you encounter do think this way. but it doesn't seem unreasonable to me that you are extremely frustrated by this sort of comment/reaction if you encounter them frequently.

anyway, i appreciate you may feel rather battle weary from all these discussions, so don't feel the need to respond (unless you want to). i'm not trying to score points or win an argument and i'm all for more research into this topic.

ps - i enjoyed mercury rising (i love thrillers) but suspect you might find it a bit "rainman" -esque... maybe not if davros doesn't think so.

Thanks for replying. I still think you misunderstood my original message- in that I wasn't really ascribing any opinions to you. I was using you in the sense of one (sometimes it would be useful to be French).

BTW- whilst the govt may not describe the vaccine as 100% safe I'm certain they don't admit that any link between MMR and autism is even a possibility. They couldn't say it was 100% safe as they have paid compensation for brain damage folllowing measles jabs for example. TBH I've said on here a lot- the numbers are small- I don't disagree with that at all. I just feel sorry for the poor sods who were the unlucky ones.

People don't understand what its like to live with autism. Really they don't. Even my IL's (50 something- not old) don't get it. They often do such inappropriate things and then wonder why all hell breaks loose! They also continunally bang on about how they understans what its like as they had 2 kids as welll. This is there excuse for not helping out- and they really don't seem to understand the pressure that autism adds to a family. I'm hoping they'll watch the film actually. I suspect my SIL wil make sure they do- she was shocked at her last visit by their inability to take the autism on board. And to them it is a bit of an idiosyncracy- by the time ds1 is 8 he'll be top of the class apparently, For f sake he can't even talk yet! Like In would even care where abouts in the class he is- ever! It doesn't even feature in my mind.

It's only since having ds2 that I realise how utterly different life is with an auti child, and that most people don't even consider the constant scenarios I have running through my head. The only people who really get it are other parents of auti kids. For example when we returned from France llast year- we were shown to our cabin - but we were shown to the WRONG cabin- we were taken to the outbound one. Coincidentally my friend was on the saem boat with her ASD daughter- I bumped into her dh, told him what had happened, and his face showed instant horror- he really understood why that simple mistakke was an absolute disaster. It''s not fair to say that no-one gets it- as I have some very good friends, who do pretty well, but its certainly sorted out my real friends from my aquantances (spelling?) . And most of my friends who do get it have slightly unusual situations themselves.

As for Joe Public? nah you just get the " I don't care how good he is at colouring in he shouldn't be behaving like that" brigade.

And as for coping with a christopher. You would if he was yours as you wouldn't have any choice! The vast majority of parents take problems on board- often shakily at first, but I have yet to meet someone who hasn't coped at all (we all have our bad spells).

Anyway back to my original point.I really don't care about the MMR story in the film, the whole arguement goes round and round in circles, and can't be answered as the research hasn't been done. I would like to see the general public educated as it would make my life a heck of a lot easier.

educated about autism that is, not the MMR!

Jimjams, just posted to you on the 'sob' thread.

christopher's mother walks out! only she waits about 14 years to do it!

let's hope your in-laws watch the film and start to "get it" a bit better.

The book was slightly unusual there. it is fairly common for the father to leave (but then isn't it always iykwim). Did she leave because she couldn't cope with christopher or because she was having an affair. i can't really remember.

I think I may have felt the same about Davros about the biased thing really. (I;'m guessing here obviously), Actually I'm with her and I don't care whether the film is biased as I feel far sorrier for the parents of damaged children, and the children themselves obviously than I do for the parents struggling to make the decision to go triple or single, or not at all. really that is not a big issue compared to the decisions the families of damaged children are making. After all we all have that issue to grapple with. I actually hope it isn't too biased as I would like this particulat child's story to be taken seriously, It's a tradgedy for his family, so deserves to be recoognised I guess.

Sorry probably stirred it all up again, not trying to, just thought process has slowly crystallised, and I now realise what I was trying to say.

you would not let it lie...!

ok, but as you said yourself, you could have a film which shows the reality of living with autism without bringing the mmr into it.

and if i wanted to be the devil's advocate, i'd say so what if it's a minor decision to vaccinate compared to the decisions made by parents of autistic kids? the numbers affected (i.e. struggling over a decision to vaccinate or note or get single jabs) are much greater.

is this where i stick my tongue out and say "so nah nah na-nah nah"

Bossykate and Jimjams - I don't want to get involved in other peoples debates but... the decision as to whether to go for single or triple was not easy but can see it was relatively trivial - but really so much of parenting is!

But... as difficult as I found the decision I was glad to have had the opportunity to weigh up the odds. I think bossykate you seem to be suggesting we would all be better kept in the dark and fed s**t. I don't agree - I'd rather have all sides of the argument, shaky though some of them are, and make my own decision. That way, I am in control!

BTW - I went for the singles with both children and had them done very late.

no, i am absolutely not, jmg and i don't see how you could have got that from my post. i am against bias - from either side - and all in favour of parents being provided with sensible balanced information as to the risks so they can make a decision. sheesh.

i really resent that, jmg, you should read people's posts properly before making sweeping statements like >>

"bossykate you seem to be suggesting we would all be better kept in the dark and fed s**t"

how dare you?

Bossykate - I am sorry - having reread your last post of yesterday again this morning I can see that I did misinterpret it last night. I can see this morning that you were saying that the MMR angle should be shown in the film because many people are affected by the issue.

Last night for what ever reason - I had not linked your first and second sentence and wrongly assumed that you were saying that the film would cause more people to have to agonise over their decisions.

I am sorry - I had been following this thread but obviously did not read your post properly.

oh dear, jmg, what confusion, i thought what i said was very clear, but maybe not.

actually, i'd prefer not to talk about the film, i haven't seen it.

as i said before, i'm against biased reporting in whatever medium, and in favour of a sensible, balanced, evidence based debate, which allows parents to weigh the risks.

the film came into it because it has been reported in the press that it gives a biased view of the mmr/autism debate. i hope it doesn't, because i think it's hard enough for parents to make decisions on this issue, without emotive drama presenting opinion as fact. now, i don't know whether the film does this or not, but i hope not.

and actually, another point, for jimjams, i don't think you can have it both ways, i.e. to say people are clueless about autism and have no idea what they could be risking and then say the decision is trivial. if people feel they are risking autism then it's not a trivial decision.

right, i really am leaving this one alone now.

thanks for your apology, jmg, but i don't think i'm out of your bad books!

batters, i'm not sure what jmg is cross with me about now!

But BK- you're missing the point. This is not a fiction. This film is one boy's story. It is a true story - at least the truth as his family see it. How could the MMR be missed out- that's the whole point. Their story is that they had a nomal child, they took him for his MMR an then they had an autistic child. How can you miss that bit out? the film then looks at everything they did- which will be interesting for people who know nothing about autism as it goes in ABA etc- and the gfcf diet etc.

Bossykate - why do you say you are not out of my bad books? And wondering what I am cross at you for now?

In actual fact in terms of the unbiasedd reporting I think I agree with what you are saying - once I had read things though more carefully.

Where we might still have to agree to differ is on our interpretation of the risks. Risk evaluation and therefore our consequential decisions will always be very personal. It will take into account our risk appetite and to a large extent our interpretation of the differing information sources that we have at our disposal.

I do think that there is still a dearth of proper research into the MMR (and other vaccines).

I really am not cross with you, I promise!

whew, jmg, we agree then, at least in theory...

jimjams, i don't agree and have just written two separate posts and deleted them, because i'm not going to comment any more.

So we're not allowed to tell a family's story because it might make some people worried about giving the MMR???? Oh OK fine. Does that mean we don't show plane crashes (very small risk, but tis made me scared of flying).

Anyway am more than happy not to discuss this any further believe me.

For more info on the film there is a forum on the AiA webiste . They were involved in advising on the dietary aspects shown in the film. If you go to Forums, general then you will see it- can't post the thread directly. It mentions the discussions following the premiere. Sounds heated.

A link I've posted several times before is this one observer.guardian.co.uk/comment/story/0,6903,647836,00.html by Nick Hornby. It's very good funny/tragic article. He does make the point in there that it's the job of the govt to reassure about MMR- no-one else. Quick snip from it- although think the whole thing is worth reading

"Last week, I listened with growing disbelief and rage as Yvette Cooper (an otherwise smart woman who appears, sadly, to have been given a vaccination that has turned her into a robot) accused anyone calling for single vaccines of 'undermining public confidence', as if it were anyone's job but her department's to restore it. The truth is, Yvette, that these parents who have been on Panorama and London Tonight and in every national newspaper saying that their children were made autistic by the MMR vaccine - the very parents, in other words, who are engendering this panic, and whose fears prompted Andrew Wakefield's research in the first place - are really not feeling very public-spirited right now. "

i disagree with these comments too. and i read the nick hornby stuff last time you posted it.