| T O P I C R E V I E W |
| GUS THE FUSS |
Posted - 06/24/2008 : 21:24:41
Dr Miriam Stoppard:
It's now been proven beyond doubt that the MMR (measles, mumps, rubella) vaccination does NOT cause autism.
Perhaps she could direct us to the research that proves this. I We all must have missed as of late??
http://www.mirror.co.UK/showbiz/yourlife/drmiriam/2008/06/23/health-why-families-with-autism-sufferers-need-a-better-deal-89520-20618194/
Health: why families with autism sufferers need a better deal
Today's health topic: autism
23/06/2008
Half a million families are hit by autism in the UK - and many of them are struggling without proper support.
The National Autistic Society's "I Exist" campaign has revealed that almost two thirds of adults with autism don't get the back-up they need, and staff in many health and social-care agencies lack training.
This spurred the introduction of the Adults with Autism bill in the Commons last month, calling for more help from Health Secretary Alan Johnson.
The bill's promoters hope it will progress further in the autumn session of Parliament.
Autism tends to be associated with children but it is a lifelong condition affecting one in 100 people.
Most local authorities and primary care trusts have no idea how many autistic adults live in their area, making it almost impossible to provide adequate services.
But getting the right support can make all the difference - 60 per cent of parents with autistic kids claim that lack of support early on meant they needed more long-term help.
Here's what you can do if you're one of the families touched by autism in the UK.
Making sense of the world
Autism always develops before the age of three and sometimes shows up as early as 18 months.
The different forms of the condition are grouped under the name of Autistic Spectrum Disorder (ASD).
The effects range from severe learning disabilities to those, like Asperger's syndrome sufferers, who have high ability and become fully independent adults. People with milder forms may miss being diagnosed altogether.
In people with autism, links between distant regions of the brain are weak. This is what makes it so difficult for them to make sense of the world.
As a result they have problems communicating with and relating to others.
They can't read facial expressions, don't like being touched and become isolated in their own world, often making no gestures or eye contact and not speaking.
They tend to resist change, become locked into repetitive routines and as children don't play imaginatively or show interest in others.
Treatment hopes
ABA - Applied Behaviour Analysis (ABA), an intensive behavioural programme pioneered in the US and now used in the UK, has achieved extraordinary results with its one-to-one intensive teaching method.
DIR - Another US approach involves the teacher getting down on the floor to enter the child's world.
Transporters - Pioneered by Professor Simon Baron Cohen, Director of the Autism Research Centre in Cambridge, this method teaches autistic children to tune into facial expressions and emotions using vehicles (trains, tractors, buses) with actors' faces digitally grafted on to them.
What makes it likely
It's now been proven beyond doubt that the MMR (measles, mumps, rubella) vaccination does NOT cause autism. Here's what increases the risk:
- Blood ties. It runs in families. For instance, the identical twin of a child with autism has a 60 to 90 per cent chance of being affected. Brothers and sisters of a child with autism have about a one in 10 chance of also having it.
- Antibodies. Abnormal antibodies have been detected in children from families with ASD and in mothers with more than one autistic child, say researchers at the University of California. It's thought these antibodies alter brain development in an unborn baby in ways that lead to autism.
- Mental illness. Having a parent with a serious mental illness raises a child's risk of autism by 70 per cent while having two parents will double the risk.
- Being a boy. It's four times more likely in boys than girls.
- Having an older dad. Two years ago a US study showed that men over 40 have a two-and-a-half times greater risk of fathering an autistic child than men under 30.
Getting help
Whatever the age at diagnosis -- whether the person is two or 22 - the right type of help is vital.
Research shows that early intervention through specialist education can make a crucial difference to an autistic child's development.
If you suspect your child has autism then see your GP, who can refer you to a specialist for tests.
Proper assessment can help you get services and support that could really improve their quality of life.
People with autism and Asperger's syndrome need specialised pre-school help and education, respite care, work or support to find benefits they're entitled to, including mobility allowances.
Staying power is essential. In one study of autistic children under the age of five, nearly half of those who had 40 hours a week of therapy over two years achieved normal intellectual and educational skills.
In contrast, only two per cent of children who received 10 hours a week reached the same standard.
But there's little evidence that vitamins, special diets or fish oils help, says the British Medical Journal.
Your best ally is the National Autistic Society, which gives first-class post-diagnosis support. Visit www.nas.org.UK or call the helpline on 0845 070 4004.
Tree House, the National Centre for Autism Education, campaigns nationally for improved services and indicates useful organisations for parents like the Advisory Centre for Education, ACE.
Visit www.treehouse.org.UK or call 020 8815 5444.
One sufferer's story: "Suddenly I solved the jigsaw"
Aly Gynn, 46, is single and lives in Bury St Edmunds, Suffolk. She was diagnosed with Asperger's syndrome two years ago.
Living with Asperger's syndrome is like being a tiny child trying to escape from a very noisy, bright supermarket, dodging people and trolleys to reach somewhere quieter.
I've always known I was different - even as a child I felt totally overwhelmed by everything.
I can't cope with bright lights, loud noises or overpowering smells - they make me anxious and I would even describe it as a sort of pain. I'm hopeless at multi-tasking as well. I can only do one thing at a time.
My idea of hell is a dinner party. I would never be able to use a knife and fork, chew, drink and cope with conversation all at once. I need to concentrate hard to do just one thing.
I also hate not knowing what is coming next in life, so I like strict routines and timetables.
I did well at school and my friends just thought I was eccentric. My family were very loving but, back then, no one had heard of Asperger's. They just thought I was incredibly sensitive.
When I left school, I became a nurse but I suffered several nervous breakdowns because I wanted to do everything to such a high standard - I just couldn't cope.
So I left nursing and did a fine arts degree, which I loved because I could study on my own. I did really well and got a job teaching young adults with, ironically, Asperger's and autism.
It was then that I started to read up on the condition and alarm bells rang. It was like a great big jigsaw that suddenly came together.
I went to my doctor and told her that I thought I had Asperger's. She sent me to the Cambridge Autism Research Centre where I had tests that confirmed I'm on the autism spectrum.
I was so relieved I could put a name to what I had and can now find strategies to cope.
I was lucky enough to be referred to an autism research centre which has offered me a lot of support. However, I know other sufferers aren't so lucky as there is a shortage of dedicated places
|
| 15 L A T E S T R E P L I E S (Newest First) |
| laura_c_a |
Posted - 07/16/2008 : 13:34:39
"With autism it never works itself out - the cycle keeps on recommencing, and the lack of support is one reason. When the families are burnt out the state takes over."
Yes, seemingly so. His nana told me that although there's been no improvements in his health, he hasn't deteriorated either. I guess I'm on the learning curve of that cycle. Even so, I feel like I've failed. I usually get my own way and succeed, so this has proven to be a very bitter pill to swallow.
"That explains why I sometimes get so angry (after reading yet another diatribe by the ill-informed) that I yell out my anger in my empty house sooner than have it fester inside." Oh Lord. How much I can concur with that statement.
I ignore parenting groups and forums now. I genuinely believe that many of the MMR posts are contrived in any case. So many start out as "I don't know whether I should give my "dd/ds/lo" the MMR jab" only for the same original poster to write at the end (usually after some ignorant and hurtful posts have appeared) "oh I'm so glad I decided to give my lo the MMR jab. It's for the best. It protects him and everyone else blah blah blah, blah."
I use to be one of those parents who would warn others about the MMR jab. Now, I don't bother mentioning the MMR jab unless asked. Instead, I point out the consequences and the hardship of having an autistic relative, and the realities of living with an autistic person. Although, in my experience, not many want to listen. Of those who are polite enough, they may hear what I say, but I don't get the impression they are listening.
|
| Elizabeth |
Posted - 07/16/2008 : 00:18:51
John, I never realised it until I read your last posting but, yes, that's right. That explains why I keep on hoping against hope that one day I'll have a daughter who "thinks straight" and doesn't get herself into all sorts of trouble because she doesn't understand how everyday life works. That explains why I sometimes get so angry (after reading yet another diatribe by the ill-informed) that I yell out my anger in my empty house sooner than have it fester inside.
I had so many ambitions for my daughter. She was going to have ballet lessons, horse-riding lessons, whatever. I would have encouraged her wherever her talents lay, the same as I've done with her "normal" twin brother. Now I would be grateful to have her living quietly and happily in the community in her adult life without causing herself or others any problems.
I love my daughter so very dearly but there are no easy solutions for her or for us. |
| John Stone |
Posted - 07/15/2008 : 23:12:11
With autism it never works itself out - the cycle keeps on recommencing, and the lack of support is one reason. When the families are burnt out the state takes over. |
| Elizabeth |
Posted - 07/15/2008 : 22:39:14
John, Thank you for your correction and clarification. |
| John Stone |
Posted - 07/15/2008 : 21:18:28
Elisabeth Kuebler-Ross
Denial-Anger-Bargaining-Depression-Acceptance
http://en.wikipedia.org/wiki/Elisabeth_K%C3%BCbler-Ross |
| Elizabeth |
Posted - 07/15/2008 : 20:59:26
Six years ago I sat in tears in our front room whilst the educational psychologist with my ASD daughter on her caseload told us that there was nothing locally for our daughter's secondary education - it's a long story but local special needs and mainstream placements had proved unsuitable. I remember saying that I never thought when I had children that I would ever be thinking of sending one of them away.
A boarding school placement was offered and we were told by more than one professional that we should accept it. That autumn the first placement failed after a short time (too long a story) but the second placement the following Spring has proved as successful as such a course of action can be. Nothing can be perfect and there have certainly been peaks and troughs over the years.
laura c a, I have a friend with a severely autistic son and, yes, visiting was restricted while he settled in. Maybe things will slowly improve and, hopefully, your contact with him will slowly resume.
We each of us have to survive as best as we can in our individual circumstances. Your sister-in-law must be feeling quite "strange" without her son taking all her time (I know I did) and, yes, she's having to make the best job of it that she can. I remember only too well what it was like to have to look after my daughter 24/7 when my husband had to go on a rare business trip. N.B. My mother-in-law once stated very firmly that my daughter was "one person's work".
If my brain were working better (sigh!) then I'd remember the six stages following a bereavement. I think it was Dr Elisabeth Kruber-something who wrote about them (she died recently). The stages included anger, denial, and eventually acceptance, if I remember correctly - maybe some of it would ring true for you? laura c a, Good luck, Elizabeth |
| Wanda |
Posted - 07/15/2008 : 20:07:45
To Laura
This is more than sad. Professionals say 'encouraging' things and it becomes necessary to latch on to something positive ie. "I must get on with my own life now". There's probably a period similar to mourning after this and, perhaps, things could change for the better eventually. Who knows?
If you search for Nigel Thomas you will find what you were looking for - Older Brother of Two Affected Children. All the best. Wanda |
| laura_c_a |
Posted - 07/15/2008 : 19:27:47
I'm hoping it's temporary. I know his nana visits him regularly and provides us with updates on how he's getting on but I would prefer to see him myself.
Maybe it's because I'm an eternal optimist, but I will never give up hope. I will never "let go" at the thought that one day, someone somewhere will find a 'cure' for autism. Science and medicine have made great strides in other diseases, so why not autism?
Of course I want my sister-in-law to get better but I am just a little concerned by her choice of words. I wasn't a happy bunny yesterday so I apologise for the post.
There was a post on JABS written by a brother about his experiences. It was so well written. I had 'cut and pasted' it as a word document and I would read it from time to time for comfort. Unfortunately, I've purchased a new computer since then and did not transfer the file onto the new hard disk. Unfortunately I don't have the time to go through the JABS archive to find it. Got to get my children ready for bed now! |
| Hannah |
Posted - 07/15/2008 : 09:49:56
Laura, I'm so sorry to hear this. It must feel awful knowing that there's nothing you can do. I wonder how many others are in the same situation?
Hannah |
| laura_c_a |
Posted - 07/14/2008 : 11:56:35
Alice2: Your post struck a cord.
My nephew has been 'institutionalised' for almost a year. Since last September, I've seen him only on a handful of occasions. Before that, I would see him fortnightly.
There are numerous reasons as to why the family chose the institution route. The main reason was because his mum couldn't cope. It was hard enough when the father was around. When he walked out and left,(and now is no longer living/residing in the UK) the stress of dealing with a “low functioning” severely autistic 7 year old as a struggling single mother got too much. My family (and other 'extended' family members such as his grandparents) tried to help as much as we could. The profeesionals involved in the care of my nephew persuaded that placing him in an institution would be for the best. I did voice my doubts but as the peadiatrician pointed out "she (meaning me) does not have to look after (name of nephew) 24/7."
I can’t write down on a public forum (or even voice in private) what I REALLY think of the whole situation and of those involved in the care of my nephew. I would be sued for deformation by all sorts and besides, Jackie would have to take down the post. I'm not even allowed to give a detailed accurate account of what's happened - I've effectively been gagged into silence.
Nevertheless, I think I can write the following: Last night I phoned my sister-in-law as she had not called me for some time, which itself is unusual. She had had an appointment with her GP recently, in which she apparently told her "We don't have to worry about your son. He's safely amongst professionals who know what they're doing. You can concentrate on yourself and on getting better." And went on to prescribe more anti-depressants. She's now in her 4th year of using anti-depressants. I'm sure more was discussed, because she also declared – and this is a first - that she no longer wants to talk about her son, or anything related to her son's condition. She finished with the sentence "I must get on with my own life now." She went on further, “I have to learn to let go and move on”. I wonder where she got that advice from?
I don't envisage having much more to do with my autistic nephew. I've always been known as "The Interfering Aunty" by these professionals and now I feel that they've successfully written me out of the script and out of my nephew's life.
I realise (now that I’ve read my post back to myself) that I sound downbeat, which pretty much sums up how I feel at the moment. I would even consider starting a support group (if I could) for relatives such as aunts, uncles, siblings and grandparents who have effectively been erased from their relatives’ lives. As my nephew’s grandmother said, “In England, we are considered as “extended” and therefore we don’t count, our views don’t matter and more importantly, we don’t have a say in our grandson’s care.“
Is Article 5 of the United Nation’s Convention on the Rights of the Child worth anything? Even the paper it’s written on?
|
| Seonaid |
Posted - 07/13/2008 : 22:44:21
You are right to never give up...
http://www.ageofautism.com/2008/07/an-autism-mom-s.html
AUTISM MOM SHARES HER CHELATION PROGRESS
By Lisa Brown
My son Benjamin Brown is an almost 6 year old boy diagnosed with severe Autism at 20 months of age. I wanted to share a little of his recovery story. The healing process has been long, the behaviors almost impossible to deal with at times, the educational needs immense. For a long time he did the two steps forward, one step back dance all the time. Change is in the wind now, after almost a full year on oral DMPS changes are happening constantly.
I wanted to share some good news because Ben has made a huge leap forward this year with his overall development and language skills. The real reason I am posting today is because he is finally toilet trained. His recovery in the past had been slow, progress sometimes seems like it arrived at snails pace however when something as wonderful like using the toilet happens just needed to share it.
Toilet training has been an ongoing total failure and I was really just beginning to accept he might never be trained when suddenly about one month ago he decided on his own he was going to do pee in the potty. BM's came a few days later and took some convincing and many hours of me sitting on the floor in the bathroom for 3 days in a row - eventually he pooped in the toilet once and then he seemed to get it and only had a couple of accidents. Its now been almost 3 weeks of constantly using the toilet on his own without any reminders and I am so happy I tear up thinking about how great it is for him. I really did not think potty training would happen without some sort of professional intervention.
I have not been working for some time and money is very tight these days but I shop at the cheap super market, hit yard sales and second hand stores and somehow find the money to keep going and am so glad I have. His program is pretty basic because he refuses to take many of the supplements and isn't fooled too often when I mix them in food or drinks. I have kept constant with the chelation medication, mineral supplements, yeast treatment and dietary aids. When I started chelation he was just about three years old and he started with a few months of EDTA suppositories (EDTA totally jump started his language) then over a year of TD-DMPS on which he was showing progress but it was slow. Last year our DAN changed him to oral DMPS. Within 3 months everyone was seeing major changes in behavior, lower outbursts, less aggressiveness, better concentration, much more language, reading skills, and personal control (he can control himself now most of the time). A year after starting oral DMPS the overall changes are outstanding.
He is not recovered yet, I don't know if he will ever be completely recovered. In taking him from Severe Autism where we were pretty much locked in the house to a point where he can now communicate and actually function in the world and he gets invited to play dates
with other kids and goes out in public and sits in a restaurant -- all the work and sacrifice has been worth it.
The changes brought on by chelation are so profound that I have people that I barely know from my sons school and family members asking what I have been doing for Ben and they really want to know which shocks me b/c I am too used to the eye rolling when I start talking about Vaccines, Biomed and DAN.
Lisa Brown, former Information Technology Professional once held executive roles at companies like CBS/Viacom, Sony and Prudential Securities. Before giving birth to my son Ben almost six years ago I was the Vice President of Technical Operations for the Internet Division of CBS/Viacom where my team built and managed all aspects of technology for their large Internet sites. After the birth of my son I wanted to change carreers. I graduated from a fully certified 700 hour Massage Therapy Program and went on to take additional classes in Cranial Sacral Therapy. Autism entered my life soon after receiving the Massage Therapy certificate so instead of establishing a Massage practice or heading back into Technology I decided to stay at home for a few years and dedicate myself to my sons care, education and recovery. I have spent countless hours reading books and trolling for information on the internet. If I didn’t do that I don’t know where he would be today. I am also a trained Special Education Advocate. I dabble in herbalism as a hobby.
|
| Janet |
Posted - 06/28/2008 : 15:11:00
quote:
[i]Originally posted by Joan
We need to step our game up here as the topic of Autism MMR etc is so one sided now and all in favour of the huge multi billion pound pharmaceutical companies.
Absolutely agree with you Joan!
Aiming to follow this up in the very near future  .... tired of waiting for "a better deal" 
|
| Joan |
Posted - 06/28/2008 : 01:47:11
Thank you Adrienne. I think I shall be waiting a long time before she replys.
Fingers crossed I shall have a picture of Jack and I plus comments featured in this Sunday's Sunday Mail (Scottish)and the topic is "Cost of Autism"
We need to step our game up here as the topic of Autism MMR etc is so one sided now and all in favour of the huge multi billion pound pharmaceutical companies. |
| aobbard |
Posted - 06/27/2008 : 20:41:49
Well jolly good for you Joan and well done!!
I agree wholeheartedly.
Adrienne. |
| Joan |
Posted - 06/24/2008 : 22:26:10
I had to reply to this statement of Dr Stoppard
Dear Dr Stoppard
My name is Joan Campbell and I read your comment
“It's now been proven beyond doubt that the MMR (measles, mumps, rubella) vaccination does NOT cause autism.”
I am extremely distraught and upset that you have come out with this nonsense. The studies that the pharmaceuticals companies and various bodies on the MMR have never come to a proper conclusion regarding whether the MMR causes Autism or not. I was involved in the MMR/MR litigation regarding my son and I can honestly say I am appalled at how my son has been treated for vaccine damage. He was and is severely damaged from the day he has his MMR at 14 months and not a day goes by that I am reminded of his autism, no language, behavioural and severe behavioural and dietary problems.
I think that there is a conflict of interest with you saying this as you are the wife of an ex chairman of GSK. I have been in contact with the Judicial Appointments & Conduct Ombudsman regarding Justice Davis and his decision to stop our legal aid, he also has a conflict of interest because his brother Nigel Davis is also linked with GSK when he made his decision.
I have written a chapter in a new book called “Silenced Witnesses” about my son and what has happened to him and it is no joke looking after a child with Autism. Can you imagine how the country is going to cope with 1 family in every hundred has a child with Autism.
My husband’s words:
"There is an urgency to address this growing epidemic of a global autism explosion.
"Otherwise there will be too many people from all walks of life worldwide putting a strain on an already insufficient caring infrastructure.
"In humane terms there is undue suffering both for the victims, families and carers.
"In economic terms the victims become non-productive whilst the family members etc in turn mostly become less productive.
"The consequences are already shocking and the longer any decisions or determination of the true cause will remain vague and more children will be at risk."
|
|
|
