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 have to take my hat off to all of you who have autistic children and deal with this on a daily basis.

I thought the programme was excellent. It has reinforced my decision not to give DS1 his MMR booster and left me feeling as though we had a narrow escape. When the mother spoke about her son after he had the first MMR, I though that's what happened to us. My DS1 had the MMR, lost speech and by the time he had his two year check he was virtually silent and my HV asked lots of questions that showed me she was concerned about Autism (although she later denied being the one to put the thought in my head). He was then diagnosed with a speech delay, we were sent to see umpteen health professionals then as strangely as his speech disappeared it came back and he now has speech appropriate to his age. I'm so glad we didn't decide to give him the double-whammy with the booster. DS2 hasn't had the MMR and single vaccines still remain a hot topic in our house, I am terrified to do it but DH thinks we should.

Thank you Channel 5 for giving this air-time I certainly learnt alot.

Jimjams your friend's son was brilliant.

Gosh Demented it certainly sounds like you had a very narrow escape.

Although I don't think the MMR caused DS1's autism, he is not going to have the booster (well, certainly not without me checking that he actually needs it first) because I couldn't bear the thought of him having a regression and all his hard-won gains coming to nowt.

I thought the portrayal of autism was very good, if heartbreaking, but a lot of the rest of the story was too hammy to be credible... Makes me more grateful than ever for my dh!
The best bits for me were the parts where she was having to deal with Nicky in public - if it means even just one person out there stops and thinks before giving me a dirty look I'll be happy.
I found the discussion bit frustrating - too many people for most to make any proper points, and too many narky interruptions from the pro-MMR side. Tamum's neighbour was (and is) lovely, and I was disappointed he didn't get to say more. He was at the back on the right, looking like an enigmatic academic.
What does SPAT mean?

jimjams do you perhaps know the answer to this question - someone who had seen the film said to me this morning that she wished her son had not had the MMR - he is about two and a half now and certainly looks fine to me - I said that I thought if a child was going to have a reaction and regress that would happen pretty quickly after the MMR - in your experience is that right?

My mum has taped the film (can't get ch 5 here) so looking forward to seeing it soon.

Yes that is so true Davros. ds seems fine and I am sick of people saying "oh his speech is really good" Yes OK he can communicate his basic needs (or demand them rather ) which of course is good and obviously that does help me to understand him a lot ...but he does have a lot of problems and I do worry about him when he starts school, if he can keep up and being teased by the other children. He can really stumble and stutter to get out even the most simple of sentences like he is talking a forgien language. He does all the classic autistic speech things like linking words together eg toast and margarine so he could be looking at a piece of toast and saying "I want some toast on it" which sounds crazy but he actually means he wants marg on it but because marg and toast go together then he thinks either word will do!

I know most of these idosyncrancies but new ones pop up all the time, eg a few days ago he said "I want some bread soup" - it was quite clearly 'bread' and he repeated it over and over. dh was just telling him to shut up but then I realised he meant 'red soup' which is what he calls tomato soup... so I had to go through the various links backwards, tomato = red = bread because it sounds like red so that word will do!

He will also say things like "mummy I can't find it" and not tell me what "it" is!? I find him quite exhausting now he is talking. Also some of his speech is quite 'empty' and he does do an awful lot of repeating and just demanding things which are very basic and concrete, certainly nothing abstract or relating to feelings.

jimjams - how does your ds do with concepts like, 'in', 'top', 'behind' etc. ds is getting better with these but finds 'middle' difficult and I wonder if he will ever know what 'sister' means!

Oh for goodness sake jimjams I wasnt implying the portayral os autism codswallop, i just thought the cod science and bias of the programme irresponsible. i have the utmost sympathy for any family with special needs that does not mean i can buy into pseudo scientific claptrap.

Urgh! I've lost track of what's being said and where on this issue. Sorry if this post doesn't make sense....
Jimjams, forgot to ask you more about the conference you mentioned. When, where, who etc? Also glad to hear your DH is feeling a bit better about the speaking, this is what we're all here for, to pass on our experiences and hope it helps someone else a bit. As for sticking PECs all over your house, I would not label everything except nouns. It would depend on the child's language and maybe the "open" word was to form a sentence. I have a freind whose home and car was fully labelled and I always felt guilty about not doing the same but if you do too many they become invisible iyswim. SO a few key ones at a time would be my suggestion.
jmg, going back a few posts! As Jimjams said, I don't follow the biomed route with my son because he is not like those kids talked about last night, e.g. children who developed normally and regressed and/or have bowel problems. I am very sure that my son has always been autistic (2 others in my/his generations of our family), he is rarely unwell and has never had an antibiotic which are things typical of the "other type". However, I have no problem accepting that other parents have had a different experience to me and I'm somewhat in a comfort zone, not feeling that something I did or allowed to happen harmed my child. I actually don't personally know anyone who believes the MMR was to blame but plenty who thinkg "something" happened and "something" caused it and they want to know more.
I thought ROsemary Kessick's son was lovely but such a sad story.

Eulalia ds1 doesn't understand any of those concepts at all. We're still working on "on". I was teaching on and under using little chairs, but he just guesses- he hasn't got it at all. the SALT siad to work on one at a time so we're doing on.

jinglesaur- i think the case studies all regressed within about 2 weeks. Physical symptoms as well. These are the really strong cases. of course more children need to be looked at. Does your friend think her child is regressing?

jmb- that first scene - where she was struggling to get out of the shop door whilst not daring to let go of Nicky and trying to hold the buggy at the same time. That was me! People will still tut though. They could see the film 15 times and they'd still tut. JMB was tamum's neighbour the one with the beard. He said something very calm and lucid.....

Demented- why don't you get his blood tested? If he has immunity he doesn't need the boosters for now.

Davros the conference is next November. Somewhere in London- can't remember where. I'll look it all up and post a link sometime. I can't remember exacxtly who is taking part but the 2nd day- autism day- has all the usual- Wakefield, Shattock etc. It probably won't be very relevant to your son, but I'm keen to see these people in the flesh.

When they mentioned Shattock in the film, dh turned to me and said "is he going to be pleased to be mentioned in this". He's been getting a bit more controversial recently, but his funding has been seperated from the Uni of Sunderland's so maybe that's why.

OK Jimjams, don't forget! Maybe its the one that was at the Royal Institute happening again? I've always liked to see and hear people for myself, whether its my specific issue or not. That way I know what I've heard and not getting it second hand. I always enjoy seeing Paul Shattock anyway. Of course, there's a limit to how many things anyone can go to but over the years I've seen a lot of interesting and wondeful people and some sh#ts! That Doh woman, Dr Elizabethe someone. She exudes condsension (sp?), I saw her with Shattock, Wakefield and some others and they were all squeezed up one end of the table and she had the other end to herself!
BTW, the portrayal of the Drs is quite realistic. There are some, and their numbers are growing, who are a lot better but that attitude and behaviour is not exaggerated. Its the old "medical model" vs the newer "social model", e.g. Dr knows best vs listen properly to the patient. Some (many) Drs really do not like or expect to be questioned or called to account. It seems like a cliche and hopefully is changing but I think its still very common.

have yet to meet a dr who knows as much about autism as me- bet you're the same davros. (but my drs are crap- obviously there are plenty out there who know more than me- I just don't meet them).

That dr Elizabeth woman(is it Miller). she's the one who Nick Hornby described as having been given a vaccination to turn her into a robot isn't she?

Davros agree so much about the old style v the new style of doctor.

Came across it all in another context too, getting the treatment we wanted for my other DS's clubfeet.

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tbh twiglett my GP's have always been pretty good. (within my expectations iyswim- my current GP is great- he listens and believes me- I recommend him to everyone with a dodgy GP). I'm talking about the paeds. I've seen 3 this year and have come out totally frustrated by their lack of knowledge.

Yes, the point about GPs is they are GENERAL practitioners. They're not supposed to be specialists but know when to refer on and maybe they do have some specialist knowledge gained through experience of parents like us! My GPs are just wonderful, my paed is OK.

Nice Gps - now that's what I like to hear!
Jimjams - it's strange, but I can't seem to remember whether Tamum's neighbour has a beard or not. He's baldish on top, with white fluffy hair sticking out at the side - I could wake ds1 up and ask him, I think he would know.. But yes it probably was him - I thought he did come across well, and calm and lucid is right.
I only really notice beards when kissing people, and I haven't got that close to ds1's psychologist yet!
And yes, I usually abandon the (double) buggy to run after ds1, although it doesn't happen so much these days, thank goodness.

Just popped in to exclusively confirm
a) my neighbour does indeed have a beard
b) jmb1964 is v. nice indeed

cheers tamum. Lucid and calm man then I was telling dh that he was probably your neighbour.

We need pros like that down here. Our pead was overjoyed to discover that ds1 was autistic despite having monovalent mumps. He kept banging on about it in every meeting- I suspect he's gone on about it everywhere. I didn't bother going into my e herpeticum stuff- didn't see the point. The man's an alcoholic and drink drives anyway so not too impressed with his judgement. He had an interesting view of the diet as well -it wasn't mainstream so therefore they didn't recommend it, but if it did ever become mainstream then they would recommend it. Nothing like making up your own mind is there!

durr monovalent measles I mean

I did think it was unfortunate that all the 'anti' MMR people seemed like models of kindness, courtesy and intelligence and all the pros were uncharismatic ranting loons! I'd happily be stuck in a lift with all of the antis but wouldn't much care to spend ten minutes at a party with the others. Nothing to do with the science, obviously, but it was pretty striking!

remember all the reputable "pros" pulled out, aloha...

I think that may have been a mistake. The ones left were a grim bunch....

who was that particularly ranting one? He was bizarre!

The problem is though aloha that the "anti" arguement is reasonable. There may be a link between MMR and autism and bowel disease in some children. Full stop. They have research that shows there may be a link. For the anti brigade it is hard to argue against as the research that could show that to be false hasn't been done. Hence they were reduced to a bunch of raving loonies. Droning on about flawed epidemiological studies in Finland does nothihg to explain why these children have vaccine strain measles virus in their guts and spinal fluid.

The pro lot did themselves no favours at all on the night. I'm peased to see they came across as badly as I suspected they did.

Jimjams, I should have his blood tested, if we go ahead with DS2's single jab I would imagine we will get it done then. Just now I'm afraid my head is firmly in the sand, everytime I pop it back up I have a wobbly about DS1 and his behaviour or a panic about measles .

Aloha, good point about those that refused to take part. Which ranty one do you mean Jimjams? The dad/GP with the greyish hair on the left? The Private Eye woman didn't get a chance to say her piece which was annoying. I still don't understand why tiny babies have to be given rubella. Why can't girls be given it, say 10 yrs old if people are worried about missing the ones who might become teenage mums? I'm not anti-immunisation, my baby has just had her last baby jabs, but I do think we need to make very sure we're doing it the best way we can. I also hate the fact that little effort is made to try to identify children who might have a problem which wouldn't be too difficult although far from fool proof but a step in the right direction. I think Simon Murch said something about MMR being safer than taking your child out in the car BUT what if you know your car has got dodgy brakes and a knackered gearbox? Its not the same risk is it? (rant over!).