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Film about autism and MMR

194 replies

Jimjams · 25/11/2003 21:27

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.

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jmg · 11/12/2003 12:47

Yes bossykate in theory - where I suspect we are poles apart is in assessing what information we have that we view as being unbiased. I think that by far and away the majority of available information promoted by government is biased. They appear uninterested in trying to understand and address the underlying concerns of parents. I find the dismissiveness by government of those parents whose children have suffered from receiving the vaccine a disgrace.

Its not an easy debate to have I know - but it does strike at the heart of what state provision is all about. We pay for the services that the state provide and consequently I think we are entitled for our suppliers to take our interests and concerns seriously. Attempts to damp down debate do not work IMO. What is needed is real high quality independent research.

bossykate · 11/12/2003 12:50

i certainly agree with you that more research should be done.

Jimjams · 11/12/2003 13:31

Good point jmg. if you look at what the anti MMR brigade are saying. It pretty much boils down to

  1. MMR may be causing a problem in a small number of children- about 10% of all autism cases. 2)Some children may be more susecptible than others.
  2. this may be a result of giving too many live vaccines at once.
  3. There is a safer alternative- single vaccines.

Hardly earth shattering stuff. The most blatently biased stuff I have read has come out of the D of H.

Been thinking further about what I said earlier about only parents of auti kids gettting it. That's not quite true. I have one friend I met at antenatal class. Her DS1 is 2 weeks younger than my ds1- and she is now pregnant with her second child. Her ds1 is totally NT, but boy does she understand our situation. When I first became worried about ds1 I rang her and sobbed down the phone and she went through the very long dx process with me. I haven't seen her for over a year- we moved away- but we still talk regularly. And every now and then she will say something that makes me realise she does understand what we have lost. I remember in the middle of a conversation she suddenly said "what happened to him? I swear he wasn't born autistic- what the hell happened to him". Earlier this week she mentioned that she had come across some photos of ds1 at her son's first bday party and she said " there he was with his plate of wotsits and sandwiches, full of stuff he can't eat now". She was also the only person apart from my mum and Il's who ever insisted on keeping a stock of gluten free food in her house. Irrelevant I know but I wanted to talk about her here, as it has been a great comfort at times to know that someone else really cares about him and has genuinely been affected by what happened to him. She's a very good friend.

Davros I meant to ask you more about something you wrote about knowing you son won't ever speak, but still having hope. I think I'm moving into the "he won't ever speak properly" zone now, and if I think about it it makes me soooooooo down- sort of knot in the stomach. but then if I think "oh he'll get there" then i feel like I'm kidding myself. I'm assuming this is just a phase you move through to acceptance. Tell me yes Then I'll feel ok kidding myself which will keep me going for a bit longer iyswim.

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bossykate · 11/12/2003 14:01

whatever

Jimjams · 11/12/2003 14:09

oh well last time I pour my heart out about a friend then.

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bossykate · 11/12/2003 14:28

jimjams, i'm sorry, that comment was really directed at the first section of your message, not the latter part.

i'm glad you have an "nt" (is that the right term?) friend who understands, i really am. tbh, i've been quite shocked at some the reactions you've had from people in the past. of course you must talk about her here if you want.

even though i am of course completely right i really don't want to argue with you any more

Davros · 11/12/2003 22:43

Jimjams, IMHO its not just a question of accepting that your child may not ever speak, who knows and you must never give up hope, you just can't spend your life focusing on that primarily. Its also a case of accepting that speaking is not all its cracked up to be! Your son sounds like a sweet and affectionate child, mine is too. Mine is very spontaneous, interactive and affectionate but he just can't form words (I think its in his head, e.g. auditory processing/memory rather than in his mouth like dyspraxia). He now uses PECs and Makaton well and has truly wonderful receptive language. I know quite a number of ASD kids who CAN speak but don't have the spontanetiy and desire to interact that my son does, they have to be heavily prompted to say anything, but they CAN speak. Then there's the ones who speak perfectly fluently but have very, very strange topics of conversation, are very repetitive and often get themselves tied up in anxious knots taking things through to what they consider logical conclusions (a few MNers on here would relate to this type I think). I really think its a natural part of "acceptance" when you start to not care MOST about speaking, as I've said, it really isn't the key to making sense! I don't want to sound too negatrive abotu ASD speakers as I would love my son to speak but I just can't care so much about it or believe its the only key to development and happiness. Of course, nothing can make you FEEL accepting no matter how much you might THINK it, it is a long, slow and hard process which, for me, is still continuing and probably always will be. Its scary to let yourself think drastically differently about something that has been so important.

Jimjams · 11/12/2003 23:00

Aww Davros - that was exactly the right thing to say. And you've really clarified things for me. You are right about speech. Our son's sound very similar. Mine is also spontaneous and interactive and I think I would rather have that than an ability to speak which wasn't then used at all iyswim. Thank you - I'm going to bed much happier than I started the day

Something else that has made me realise the basic unimportance of speech is having ds2- who also doesn't speak but yet communicates clearly and without any problem all day long. I had begun to stop seeing it as everything. Although I still long for a conversation- I'm sure you know what I mean- and I don't think I'll ever stop longing for that.

BTW I sent him into school with a motorhome magazine today- he's very into motorhomes at the moment. When I left he was leafing intently through it- looked very cute.

Thanks again. You've really struck a chord.....

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Jimjams · 11/12/2003 23:00

whoops misuse of an apostrophe there

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Davros · 11/12/2003 23:11

I'm pleased (and flattered) that its helped. Its so hard to describe something like this and very easy to upset people. I agree though, I'd love a conversation. My dearest wish would be to have just 10 minutes when he could tell me how he feels I think I know but its still a lot of guesswork. We do have a very good relationship though whcih I am very thankful for.

Jimjams · 11/12/2003 23:16

10 mins would be good. I know what you mean about a good relationship as well. I do feel very close to him, and we are very at ease with each other which is lovely.

It really helped- your post made so much sense to me. I don't know another child with such limited speech as my son (although a friend's dd was like him at his age) and it is slightly different. But thank you I feel really positive about it now. (because of the spontaneity and affection etc).

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fio2 · 12/12/2003 11:27

Jimjams everytime I see that trailer on 5 for this and Wakefield is mentioned. I always have a giggle to myself about me thinking he was a nuclear power stationSmile

Jimjams · 12/12/2003 11:51

lol fio2. Andy Sellafield! That would explain why the govt think he's so dangerous

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fio2 · 12/12/2003 11:55

lol Grin

maryz · 12/12/2003 12:09

This reply has been deleted

Message withdrawn at poster's request.

Jimjams · 12/12/2003 12:19

It's a pity so much emphasis is put on speech maryz. I have friend's with very verbal children and it makes (their child's) lives very difficult as people don't seem to understand that the speech is there but the understanding isn't. Their difficulties are definitely glossed over. One friend's dd (no 7) has been speaking since she was 2 and a half as well. She have many very complex problems, but because she was speaking these were ignored until the last year. TBH she has far more severe problems than ds1, but they just were never recognised (by the pros- her mother has spent the last 5 years telling everyone they were missing the point).

I'm glad things are getting easier for you with your ds now.

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Davros · 13/12/2003 12:08

maryz, it does make sense. Its one of those ol' double edged swords. If your child is more severe, non-verbal, more repetitive behaviours etc in some ways life is easier. For a start you don't have to deal with the child's own awareness of their difference. You don't have to convince people (not now anyway, did at dx like most!), you get easier access to support and help BUT, of course, you may live with a child who needs a lot more supervision, is probably often a danger to themself and others, has no or few interests, may not be toilet trained, may not respond to you etc etc. Although we manage well, we hadn't been on holiday for 6 years until this year. WHen I was working and colleagues would sigh "oh, I need a holiday" I'd just laugh to myself and think "you poor sod, you haven't got a clue!" and then help them to plan where to go etc and expect a postcard! I know for a fact that my son has had a lot of attention at school from very senior people because his behaviour was so bad! THe poor, passive and well behaved but autistic kids get less support, intervention and attention. Also, I don't want 10 mins when he can talk to me, I want 10 mins when he isn't autistic.....

Jimjams · 13/12/2003 13:19

And could that 10 minutes start right now please- he's saying something I don't understand.....

At lunch today dh was a bit down (had been to work xmas party- usual questions- "are the boys looking forward to xmas?" gritted teeth reply of "yeah" you know the sort of thing- rather than "no ds2 is too young and ds1 hasn't got a clue" but anyway he said "when's ds1 going to start to improve?". I pointed out that he is- all the time, and then told him what you said earlier about the not talking- and he said it really helped! So thanks again. Now pleased I have an affectionate loving boy, rather than sad I have a non-verbal one.

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aloha · 13/12/2003 23:04

Jimjams, I only have NT child at present, but I agree that affection beats speech every time. I am so sure your child will speak one day. You just may have to wait longer than most. The feeling of loving and being loved is just so wonderful that it is IME & IMO what being a mother is all about. I wish you well.
xx

coppertop · 14/12/2003 15:51

I think that if ds1 had started to talk at the 'normal' time we would still be trying to get on to a waiting list somewhere. The SALT was the first to really 'look' at ds1 and think that perhaps his lack of speech might be a symptom of something else rather than just his only problem IYSWIM. Did anyone else keep hearing "Well even Einstein didn't speak until he was 3"? (Apparently found to be untrue anyway!) Life has become a bit easier since ds1 started to speak. The problem is that the fact that he CAN speak doesn't necessarily mean that he WILL - as I discovered when I found him happily playing on the computer, surrounded by little pools of sick! It just didn't occur to him to let someone know....

Jimjams · 15/12/2003 19:48

Press release from JABS

JABS PRESS RELEASE - 15/12/03

HEAR THE SILENCE

JABS welcomes the screening of tonight's Channel Five TV docu-drama "Hear the Silence" (9.00pm) which is based on real-life parents' stories about the MMR vaccination and the controversy surrounding Dr Andrew Wakefield and his research suggesting a possible link between the MMR vaccination and autism. A debate follows the programme which JABS had hoped would include the vaccine policy officials from the Department of Health. Unfortunately, those responsible for vaccination policy declined their invitation to appear. JABS is disappointed that the same people who openly criticise the research scientists like Dr Wakefield and parent groups did not have the courage and courtesy to put their case before the public in this debate.

Since our group was founded in 1994 JABS has been contacted by thousands of parents concerned about adverse events following childhood vaccinations many of whom have long term serious problems including autistic-like symptoms and bowel disorders following MMR vaccines. Some parents have informed us that their own GP or consultant was not being effective in treating the child's long term diarrhoea/constipation and were desperate to be referred to a specialist clinic for diagnosis and treatment. Many of these parents were provided with information from JABS on how to contact Dr Wakefield at the Royal Free hospital.

JABS believes the Government's vaccine senior officers have failed to investigate the children believed to have been damaged. During the course of a one hour meeting in 1997 (portrayed in the film) a full list of children, then affected, was presented by JABS and the legal representatives to the Health Minister, Chief Medical Officer and Principal Medical Officer . We asked that the Government should instigate a scientific investigation of the children believed to have been damaged which could have been useful on two fronts:

  1. To answer the question of MMR safety.

  2. If the vaccine was found to be causing harm it may have been possible to identify ''at-risk'' groups and this may have led to a screening programme which could have improved vaccine safety for all children.

The Health Minister at the time stated she was willing to look at all scientific evidence but as parents it is very difficult for us to produce this. That is why we believe the current claims by the vaccine policy-makers that there is no scientific evidence to show the MMR vaccine is unsafe will continue to be made. Until the Government investigates children believed to have been damaged, the ''scientific evidence'' from the DoH is unlikely to change.

The statement that the health secretary, John Reid, made on GMTV in November 03: "It is unequivocal that there is no evidence at all that MMR is linked to autism." needs to be challenged. World experts in the field of virology and pathology have replicated results found by Dr Wakefield's team when he was at the Royal Free Hospital, London and other independent Japanese scientists have also duplicated the findings.

John Reid should be reminded that the drug manufacturers of MMR vaccines have provided his senior medical advisers with a long list of the adverse reactions known to be associated with their products. These lists are virtually identical from each of the drug companies. They state the minor side effects which doctors are happy to share with parents: namely - rashes, raised temperature etc. These same sheets also state reactions only recently being publicly acknowledged by the Health Protection Agency e.g. febrile convulsions, blood disorders (ITP). The information sheets also state the severe adverse events: to name but a few - diarrhoea, nerve deafness, arthritis, Guillain Barre syndrome ( a paralysis syndrome), severe vision problems, seizures and encephalitis. Encephalitis (inflammation of the brain) can lead to a range of disabilities such as epilepsy, loss of speech and communication and acquired autism.

The MMR vaccine contains three live attenuated viruses; their major disadvantage is a danger of reversion of the virus strains to more reactive and virulent forms. In plain terms, if the wild virus can cause inflammation in the brain, joints, spine, eyes, ears and bowel then so can the vaccine-virus.and to quote an extract from a letter published in the Times (February 9 2002) from Dr David Hall, President of Royal College of Paediatrics and Child Health : 'Some children develop encephalitis (brain swelling) when they catch measles, mumps or rubella viruses and may be left with a variety of handicaps, including physical and mental impairment, deafness, internal organ damage and autism.....'

Recent press stories have said that there is a parallel between the film of Erin Brockovich and Hear the Silence, however, Brockovich proved her case in court. Unfortunately, the MMR victims have had their legal aid stopped just six months before the cases were to be heard at the high court in April 2004. There is a case to be answered for the link between MMR and autism and bowel problems. In the interest of justice, these children deserve to have the issue of MMR safety resolved in court and for this we need the help of legal aid.

  • Many parents believe that the withdrawal of legal aid prior to the court cases being heard is another way to delay or prevent access to justice for vaccine damaged children. The families' representatives were able to present to the legal aid appeal committee (the Funding Review Committee) evidence not only that measles virus had been found in cerebro spinal fluid (CSF) taken from three out of six of the test cases, but also that it had not been found in 19 out of 20 controls. If the measles virus is in the CSF then it must almost certainly be in the brain. Bearing in mind:
  • that these children, like all autistic children, suffer from a form of brain damage,
  • that measles is known to be able to cause brain damage and
  • that no other cause of autism has been suggested for the overwhelming majority of the families we are trying to help

Politicians and their senior medical advisers need to stop playing politics with children's lives. If there is a potential for measles epidemics they must provide measles vaccines. Critics of our group must think of this: If our members had been anti-vaccine lobbyists our children would not have been taken for vaccines and subsequently damaged. We are parents who put our faith in the system, our children have reacted usually in the time frame known to the manufacturer and, in the main, are living with long term problems also known to the manufacturer.

Background Information

  1. The MMR vaccine was introduced into the Japanese health programme at about the same time as in the UK. Shortly after its introduction Japanese parents started to complain to the authorities that their children were suffering severe neurological damage. The Government failed to act. Other parents started to reject the MMR vaccination for their children and still the Government failed to act. Outbreaks of measles occurred and, unfortunately, it was the most vulnerable in society, the babies under twelve months of age and too young to receive a measles vaccine, that were hit hardest and 69 deaths were recorded. The Japanese Government then banned the MMR vaccine and introduced a policy of separate measles and rubella vaccines. (The single Urabe mumps vaccine would not have been accepted as it had been held responsible for the neurological damage when combined in the Japanese MMR vaccine.) The Japanese MMR court cases were heard in March 2003. Over 1,000 children were awarded
    MMR damages against the Japanese government and the Research Foundation for Microbial Diseases at Osaka University in Suita, Osaka Prefecture.

  2. The UK pre-introductory MMR trials were inadequate in that they failed to follow up adverse reactions for more than just a few weeks. Proof of inadequacy is in the knowledge that it took the DoH four years to identify and withdraw two of the three original MMR brands that had been introduced into the UK vaccination programme in 1988. These two brands, Pluserix and Immravax were withdrawn by September 1992 because they contained a mumps strain known as Urabe which caused mumps meningitis. Many of the JABS children have had these brands of MMR. It is also of concern that this problem must have been well known to the Government as an MMR vaccine containing the Urabe strain had been suspended in Canada six months before MMR was introduced in this country.

  3. The Government's vaccine policy-makers have failed to provide an efficient monitoring system for adverse events following vaccination. The Health Protection Agency in its former role as Public Health Laboratory's Service is on record in the Lancet (Vol 345. March 4, 1995) stating ''....there is an urgent need to find more reliable methods of adverse event surveillance.'' The point being that unless all reactions are put forward to a central body instead of being dismissed as ''unrelated'' or ''just a coincidence'' the central database will never hold accurate information on adverse events. How many coincidences are needed before it becomes meaningful enough to warrant scientific, clinical investigation?

  4. The Government is well aware that vaccines sometimes cause severe damage; there is a branch of the Department of Social Security known as the Vaccine Damage Payment Unit. It was set up in 1979 following the Vaccine Damage Payment Act 1979. MMR vaccine damage payments have been awarded for various adverse effects including: epilepsy, Guillain-Barre syndrome (a paralysis condition), SSPE (a brain-wasting condition), profound deafness and death. We are aware of 24 cases where children have died after receiving MMR vaccines.

  5. Any debate on vaccine damage will have DoH officials quoting the massive number of doses given to children in the United States. What is never stated by UK officials is that in the US they have a National Vaccine Injury Compensation Programme. In the last 12 years this programme has paid out over $1 billion in payments to vaccine damaged children of which a 14% share has been paid out for MMR or its components. The drug companies have to contribute to the programme and up to August 1997 they had to pay an excise tax on each dose using a risk-based formula. The DTP and MMR were taxed at $4.56 and $4.44 respectively, polio vaccines at $0.29 and DT (diphtheria/tetanus) vaccines at $0.06. This must surely give an indication of which vaccines carry the highest risk of a serious adverse reaction.

  6. The problems associated with childhood vaccines is also being reflected in the United States as has been reported in the United Press International 13/11/03:

Washington, Nov.13 (UPI) More states next year probably will follow the example of Texas and Arkansas and pass legislation making it easier for pareents to exempt their children from mandatory vaccine requirements, health experts told United Press International.....The Texas and Arkansas laws driven largely by groups arguing that vaccines carry too many risks -- passed earlier this year. The laws allow parents to have their child exempted from the immunizations states require for school enrollment, such as measles, whooping cough and polio.

  1. If outbreaks of measles, mumps and rubella are feared and parents in their thousands want to vaccinate against these diseases, why are the DoH vaccine officials failing to order single injections from the very drug companies currently supplying the UK market with the MMR vaccines? JABS believes in a safe vaccination programme but the emphasis is on safe!

Contact Details:

Jackie Fletcher
JABS (Justice Awareness Basic Support)
1 Gawsworth Road
Golborne
Warrington
Cheshire WA3 3RF
email: [email protected]
website: www.jabs.org.uk
Tel: 01942 713565

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charliecat · 15/12/2003 19:58

Thanks for reminder that its on tonight.

popsycal · 15/12/2003 20:11

i really want to watch this but part of me is stopping myself.....

popsycal · 15/12/2003 20:23

this review was in a newspaper today......
what do you all think to it?

Jimjams · 15/12/2003 20:31

well stephen rooney has seen research that I haven't as no such research has been done.

If health professionals want to stop being portrayed as baddies they should listen to parents more (there are good ones out there, but there are many more bad ones in my experience).

No evidence has been found proving a link between MMR and autism. But the presence of vaccine strain measles in the spinal fluid (and therefore brain) of children with autism at a far higher rate than controls with leukeamia (who are therefore suscetible to infection) could be counted as something worth worrying about.

Not surprised though- it't th dort of dross the dept of health p[uts out all the time. The SUnday Times article yestday explains clearly whats worng with this.

basically if I put my head in the sand and refuse to look at the affected chidren then i won't find a link so the mmr is safe.

yeah right.

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