24 Dec 2007
We all attended the village carol service. Lady sang with the Brownies. Duncan enjoyed the big Christmas tree and the chocolates. He had a bit of a dance to the singing, and there's not many who can grove to 'Hark the Herald Angels Sing' but that boy could! A man was holding a mike to the motley choir during 'We Wish you a Merry Christmas' and Duncan approached him to have a closer look, then directed the mike to himself before singing a couple of lines of the song. Lady said all the Brownies thought he was very cute.
My sister arrived a few days ago and it's fantastic as always having her around. She's the cool pretty auntie who loves all the children and who is adored by them in turn. We've been out shopping a few times in preparation for Christmas day and yesterday's clan party. I was glad to have her with me on Saturday when I had a bout of what I refer to as 'flutters' or to be more exact, supraventricular tachycardia (SVT), in TK Maxx. It's a benign but irritating condition I have had since late childhood, causing my heart to beat at around twice the normal rate leaving me dizzy and breathless. I know how to deal with the episodes. I just have to sit down, take it easy and do a Valsava manoeuvre (holding my nose while trying to blow through it). I can usually get rid of it in a few minutes, but in the shop it took what felt like ages, which made me more stressed and anxious, which made it harder to overcome. Anyway, I was plonked on the floor in the shop feeling a bit embarrassed but knowing I'd feel even worse if I walked downstairs to the nearest seats. Several people offered assistance and one lady got a staff member. The staff at TK Maxx were great. They got me a chair and water and the manager offered to arrange a taxi home. When I said I'd be driving, she offered to have one of their staff drive my car for me (my sister doesn't drive.) But when the SVT passed, as it always does, I was fine and well able to drive myself. It's just nice to know that people can be so kind.
Anyway, yesterday was one of the highlights of the Christmas season; our big extended family party. I booked a room in a restaurant which is about equidistant from all of us travelling from north east, due west or south west. Attending were all my siblings except our youngest brother, their partners and children, our dad and step mum, our step sister and her family. We had lunch, the cousins played, we exchanged presents, my dad dressed as Santa and all the children recognised him, we chatted, Duncan ran around, we enjoyed being together, even if it was kinda loud. We did the same thing last year, and it's just such a nice way of getting everyone together without anyone having to travel too far, or anyone having to cater for 30 or so people.
Now I must go wrap some gifts. I put them under the tree at the last minute, or it might be difficult for Duncan to resist the urge to open them.
To all of you who read this, a very Merry Christmas and best wishes for a happy new year.
14 Dec 2007
7 days ago, I learned that a very close friend lost a family member in the most shocking and terrible way. I visited their home, and sympathised with them in their grief and pain. The loss is severe, the victim was a wonderful, kind, vibrant and beautiful person who appeared to have been doing really well recently. It has given us all cause to question the current provision of psychiatric services in this province.
The following morning, Gordon and I flew out to Malaga in southern Spain for a 3 day holiday, booked months ago for his birthday. We really needed that time together. Both of us were low and worn out by the past few months, and our time away was wonderful and rejuvenating. I was upset to hear when we returned, that Duncan, who with the other children had been cared for by their wonderful grandparents, had been a bit unwell and miserable.
Yesterday I spent a while with Duncan curled up on my lap, making up for lost cuddle time, just browsing my favourite blogs and web sites and catching up on the latest news. It made for dispiriting reading.
I read on Abfh blog, of the NYU 'Ransom notes' campaign. It appears to be an 'awareness' raising exercise by the Child Study Centre of the university, to highlight the impact of mental illness on children. That might be worth doing, but this is not the campaign to do it. This is disgusting, degrading, inaccurate and dehumanising. The autism 'ransom note' that they intend to splash all over New York and put in magazines and newspapers, says,
'We have your son. We will make sure he will no longer be able to care for himself or interact socially as long as he lives.'
How can anyone think that such a statement on a billboard will benefit a single autistic person or their family? How would I like to explain that message to any of my children? I pity the autistic people who will face such a sentiment in huge letters as they go about their city. What fear and ignorance it inspires. They have similarly awful notes on other conditions too; bulimia, OCD. depression, Aspergers and ADHD.
There is a petition that I would encourage anyone who reads this to sign. It consists of a well composed and thoughtful letter endorsed by several disability organisations, and addressing the justifiable objections to this campaign.
Via Autism Vox, I read the New York Times article about the controversy. The center’s founder and director, Dr. Harold S. Koplewicz, is quoted as saying, 'Children’s mental disorders are truly the last great public health problem that has been left unaddressed.
He went on to say (in the NYT article),
'While we knew the campaign was edgy and we knew it would be harsh and upsetting, the facts of mental illness are even more upsetting.
'I am disappointed. I thought the people we’d be arguing with are the people who believe psychiatric illness doesn’t exist or those who believe children are being overmedicated.'
'I thought we’d be fighting ignorance. I didn’t think we’d be fighting adult patients or the parents of patients whose feelings have been hurt.'
While there clearly needs to be more understanding of childhood mental health issues, this campaign only serves to increase fear, stigmatisation, ignorance and misunderstanding. This is not about something as nebulous and unimportant as 'hurt feelings' and I don't know why he considers those of us opposing the form of the campaign, as 'fighting' them. We just want to come to a resolution.
5 Dec 2007
Duncan usually stays with his grandma while the class is on, and Gordon and I go to the gym. On Saturday Duncan made it very clear he didn't want to stay there, so we wandered the town together for an hour. It was really nice. We picked a few library books, and I was tempted to pay a visit to the event upstairs, where there was some sort of CAM fair with stands on reiki, aromatherapy, angel er, handling(?) and the like. Duncan was in his major buggy, and although there was a lift somewhere, I couldn't be bothered to look for it. I'd have loved to hear what some of them have to say for themselves though. Perhaps another time.
But we made the infinitely better decision to buy some buns and trawl the charity shops looking for books, I found a couple of ancient Ladybird books in perfect condition. One is a book on costumes and clothes through the ages. It ends with a page entitled, 'present day clothing', illustrated with a 60's era family picnicing by their car, with father in a cravat and slacks, mother, ever so daring in trousers, and children, gay and comfortable in shorts and 'jeans'. We like it!
Today, The Golden Compass film is released and I'm trying to organise things so Gordon and I can take Lady to watch it. She has been listening to the books over the past month, and loving them. I really like the trilogy, having re-read them recently in anticipation of the movie. I know I'll be disappointed when aspects of the book are omitted or changed, but it looks good on the trailer. We all worked out our Dæmons from the website. The results were rather inconsistent;
I was assigned a gibbon called Thalius. I am 'modest, sociable, dependable and fickle.' (Dependable and fickle!)
Gordon was assigned a chimpanzee called Lysandra. He is a 'leader, assertive, spontaneous, modest and inquisitive.'
Lady got an ocelot called Persaon. She is 'modest, spontaneous, inquisitive, fickle and a leader.'
A tiger called Onthany was chosen for Duncan. He was described as 'solitary, a leader, shy and proud.'
Thomas was allotted a raccoon called Arphenia. He is 'a leader, sociable, modest, spontaneous and inquisitive.'
As far as I'm concerned, there is one attribute in each profile that shouldn't be there. If C. or anyone who knows us well is reading, can you pick the error for each of us?
1 Dec 2007
Yesterday we worked together to out his latest creations into a video. He picked the song 'Hawaiian Roller Coaster' from Disney's 'Lilo and Stitch' as his soundtrack. He didn't know at first that the song mentions roller coasters, he just liked the tune.
Anyway, here's what he produced.
28 Nov 2007
I just read a press release from the United Nations on a 'World Autism Day Resolution';
Member States should break the “barrier of shame” of people suffering from autism and raise international awareness of the importance of early diagnosis and treatment of the brain disorder, which was estimated to affect 35 million people worldwide, Nassir Abdulaziz Al-Nasser, Permanent Representative of Qatar to the United Nations, urged this afternoon during a Headquarters press conference.
Qatar shares the concerns of a number of countries about the high rate of autism in children in all regions of the world,” Mr. Al-Nasser said.
Well, I'm not sure what 'barrier of shame' means in this context. Perhaps he is trying to adopt the social model of disability and explain that people are treated shamefully for their autistic differences and suffer from a lack of acceptance, understanding and accommodation.
There are calls for the UN to designate April 2nd as a UN autism awareness day. It's a shame that these efforts are appropriated by organisations like the badly named Autism Speaks.
Joining the Ambassador today was Bob Wright, co-founder of Autism Speaks, a United States-based non-governmental organization that works to raise awareness of autism and fund research for its causes, prevention and treatment. “Combating autism is going to require worldwide effort. It is not politically, geographically or economically centred. It is an equal destroyer,” he said.
This is the organisation the UN chose to represent the interests of autistic people. Autism Speaks make no secret of their eugenic aims and trumps them at every opportunity. Notice that they make no mention of funding services, training, or living support for autistic people. This is the group that proudly displays a photo of Bob Wright and James Watson on it's website, along with a quote from Watson saying, 'Autism is the worst thing that can happen to a family.'
It's claimed that;
In the United States, children diagnosed before the age of three and then properly treated had a 50 per cent chance of graduating from public school at an appropriate age level. However, many African-American and Hispanic children, and children from non-English-speaking households, were not diagnosed until age seven.
Many children who are diagnosed very young as autistic, particularly as mildly autistic, lose the label as they get older. It is important to help all children as early as possible so that they receive the understanding and appropriate education (not treatment) they deserve and so their parents can learn how best to interact with them and encourage their communication. Many children, like Duncan, are unlikely to be able to graduate from a school at age appropriate level, no matter what 'treatments' I could have foisted on him when he was younger, and he was diagnosed at just over 2 years old.
Suzanne Wright, also co-founder of Autism Speaks, said 1.5 million people had the complex brain disorder in the United States, and a new child was diagnosed with it every 20 minutes. An immediate global response was needed to address the epidemic, she urged.
Ah yes, the 'autism epidemic'. That would be the epidemic which dates from the time the diagnostic criteria were widened to encompass many more people, the epidemic that coincides with the falling numbers of people labelled as 'retarded' or 'learning disabled', ie diagnostic substitution. It's disingenuous of this organisation to harp on about a non-existent epidemic, which they must know is false, to raise their profile and funding.
And get that scary statistic about another one 'diagnosed every 20 minutes', they're like Body Snatchers...
Also during the press conference, Jacqueline Aidenbaum Brandt, a mother of an autistic son, shed light on her personal experiences, including the misconception society had of the brain disorder and the concerns of parents of autistic children. She said people often mistook an autistic child for an unruly or poorly behaved one, blaming the parent instead of the disorder for the child’s behaviour. Caring for an autistic child was complex, as parents were left to grapple with whether the child would one day be independent, and how he or she would be cared for after the parents had died or were no longer able to do so.
It's a pain when strangers are critical, misinformed and lacking understanding about autism. Autism Speaks make no efforts to help here, choosing to paint autism as entirely horrible, devastating and the 'worst thing that can happen to a family.' The NAS however have at least made some good efforts to educate the public in the UK with its 'Think Differently' Campaign.'
The mum quoted above worries about her son's future, perhaps she will be canvassing the charity that claims to speak for autism, about whether they intend to change their emphasis somehow to supporting autistic adults to live as independently as possible.
From the Telegraph article;
In the new centre, there are some top scientists and clinicians, one of whom I know very well and who is working hard to improve cancer therapies and to make things better for the patients.
World-renowned oncologist, Professor Patrick Johnston, director of the new centre, said the new centre marks "a major milestone for Northern Ireland and Queen's in launching an international centre for excellence in cancer research and care".
27 Nov 2007
The children were watching a film now and then; something about real people and Warner Bros. cartoon characters playing basketball. Duncan was glued to the telly at one stage, watching as a man was squashed flat by a heavy character, after which a few cartoon animals put a pipe in his mouth and pumped him so full of air that he turned into a massive balloon and floated off. I commented on the funny man pretending to be a balloon, and promptly forgot about it.
When I was trying to get Duncan settled that night, he kept talking about getting 'blown up'; 'Duncan not blown up, Duncan will be fine, be small boy.' At first, I associated those words with bombs, and wondered what on earth he had seen! It took me a while to realise he was still thinking about the film. I reassured him that he was fine, he would not be blown up like a balloon, he would stay small, that Mummy would look after him. I talked again about the man in the film, and how he pretended to puff up, he was a funny man, playing and pretending.
We have gone over these facts a few times since then, and have explicitly explained how each individual in the family was safe from the threat of being pumped full of air.
It's surprised me before, what the children have been worried by or frightened of in their videos. Lady used to be terrified of the opening scenes of 'Brum.' The kindly old engineer freaked her out for some reason. She used to go and sit quietly on the stairs when something she wasn't comfortable with was onscreen. It's harder to remember what Thomas was scared off, since he never was as sensitive as the other two. He didn't like the lion and the bear on the Teletubbies much though, and who'd blame him, the bear was voiced by the intimidating Penelope Keith!
20 Nov 2007
Thomas and Lady developed a 'history project' yesterday. They dressed up in different outfits, and read the relevant bits from their 'History Explorer' CD Rom. But the main point of the exercise seemed to eating the food of different places and eras. The had tea (ancient China) olives (Rome and Greece) bread (medieval Europe) and raisins, substituting for dates which we don't have, (Egypt). Like their parents, they believe food is the best way to engage in different cultures.
In the spirit of educating himself, Thomas asked me to put on their DVD of the excellent Wallace and Gromit film, 'The Curse of the Were-Rabbit.' He needed, he said, to learn about cheese!
We all recently enjoyed the film 'Ratatouille' too, though it had a complicated plot and was much too long. Duncan loved the bit where the rat cooked soup. It's led to a revolution in his diet. He has for a while, been eating tins of Campbell's oxtail or cream of chicken soup. But these have too much salt, and I'd much prefer that he eats home cooked food. Ratatouille seems to have persuaded him. After the film, he asked to cook some soup, 'with vegetables, carrots and leeks.' He took out the saucepan, chopping board, ladle and wooden spoon and arranged them all by the cooker. Then we worked together to make a nice chicken and vegetable soup, which I blended. He ate it all, and has since had many a bowl of hearty home made soup.
Thank you Pixar!
19 Nov 2007
Please be advised that this copyrighted document referred here to as "Melnychuk" that you are displaying and continually re-displaying in comments was illegally hacked from a web site in the United States of America.
United States law allows that hacking a web site and posting, and/or using copyrighted material without express permission of the author is a federal offense (sic) and is punishable by incarceration even if secondary or mirrored from another web site.
That legal surrender of a fugitive to the jurisdiction of the United States is required by British law.
Ohhh, scary! I mean, I've seen ' The Shawshank Redemption' and other shows about tough US prisons. I don't want to go there! I should be so sorry and do whatever they say. Mr/Mrs Anonymous has got me quaking (I almost wrote quacking,) in my socks...they wish.
Since I have no idea who is making these empty threats, I am going to do nothing but poke fun at whoever is responsible.
The web page I quoted from is available here.
Does this look the work of a hacker? I couldn't hack my way into a children's ABC site. My talents lie elsewhere.
I just wonder what they have to fear when they have to write threatening comments on the puny blog of an Irish housewife.
Oh and I have a disabled child, don't they know that makes me practically a saint ;-)
14 Nov 2007
'Read it.' 'Wellington Mews.'
'Read it.' 'Texaco.'
That's what I hear over and over these days. It may be when we're driving and I look in the mirror to see a little hand pointing out the window to a road sign or a poster in a estate agent's window or the name of a petrol station. It may be when we're looking at a book together or when he's using the computer or he may be looking at a packet of crisps, ('Tayto Onion Rings').
In his own way, and with zero stress, Duncan is learning to read.
He's also learning to type. Here are some of his recent 'invented' spellings;
The Gerrar (Bagheera, from the Jungle Book)
Mogley (Mowgli, as above)
Pinck mad mouse (I love the use of 'ck' at the end)
sasagtas (sausages...I'm not sure why he has a 't' in there)
However, I have only to show him once how to type a word correctly and he remembers it. Most of what he types in Google, Youtube or to name his pictures is spelt properly.
We had loads of fun playing a demo version of 'Roller Coaster Tycoon', a game in which you design your own fair. I'll have to get the full CDRom as the demo cuts out after about 15 minutes of play. That's one idea for Christmas.
Duncan is still enjoying playing with his Dogz 4 game. He now has learned to take a screen shot, paste it into the Paint program, cut out the part he wants and paste that to a new file where he expands the image then paints and adapts it to suit him.
This is one of his pictures. The toy with blue hair was in a Kinder Egg. Unfortunately he lost the toy, but we managed to find a picture of it on the Magic Kinder website.
The boy is an edited image from the excellent Starfall learn to read site. It's on the Who Am I? section.
The toy is sitting in a car from the Mad Mouse roller coaster. This is another edited screen shot. I helped him a bit to draw the mouse, but he did the rest by himself.
I love his vision!
Here's a request to anyone who reads this.
If you happen to buy a Kinder Egg and find the toy shown above, I would be ever so grateful if you would be willing to send it to me. Duncan was very upset to have lost it and we have bought about 20 Kinder Eggs since then, but have not found it again. Lady says it's like looking for the Wonka golden ticket. But this is valuable only to us!
9 Nov 2007
Two boys aged 4 or 5 joined Duncan. They were playing with the foam blocks, and Duncan approached them. He laughed and imitated them in their game of jumping onto the blocks. The boys looked at me and whined that he was ruining their game. I just asked Duncan to come and play with Thomas and Lady on the 'pirate ship' (the other section). Duncan was as always these days, wearing his Captain Hook costume. Duncan didn't want to move. He started playing on the slide and in the ball pool again, and the boys were mocking his speech, saying 'go go ga ga' as if he was a baby, though he's bigger than they are. Then he passed the boys again, and one of them started kicking him! I sternly told the boy to stop; 'don't hit or kick him, I'm right here watching!' and took Duncan away. Duncan was upset and kicked at me a bit, but I distracted him by playing at being a crocodile.
The boys went off to terrorise other children and a few little girls came in. One of them was a real sweet heart. She went down the slide laughing with delight, making Duncan laugh with her. She started to play with him wordlessly, throwing balls and sliding and climbing and they ended up hugging each other.
Duncan was rather distracted by the shop, with loads of sweets in easy reach and which was unstaffed most of the time we were there. I had to move him away from it many times. He worked out all the things he wanted in order of preference;
'1, Kinder egg, 2, marshmallow, 3, apple juice with a straw, 4, ice-cream.' We actually got through the whole session without buying any of it. Bonus!
I'd warned Lady about the nasty boys, and when we were leaving I saw her in a corner talking to them. Then she stepped back, and did a jujitsu high kick in the air.
I asked her what had been going on. She told me that they had pushed Thomas on the big slide, and then tried to knock Lady over. She told them not to, and then demonstrated her martial arts capabilities. I think she was making a point. That's my girl.
Thomas loved the play centre. He's become so brave and outgoing recently. He went on the huge inflatable slide, and jumped so far off the top that he landed half way down before starting to slide. He asked a (nice) boy to play with him and somehow I think Thomas was dictating what they did and when.
His tooth fell out on Tuesday and he was so excited about the whole thing, especially the prospect of some cash! He cracks me up with how he talks. He sounds more grown up than he looks, and he's adopted lots of little phrases from films and TV. Echolalia? ;-)
We were watching a film recently where a character fell and bumped his backside. Thomas goes, 'Oh that's gotta hurt!' He's a cute and sweet boy, but he can be rather, well lets put it nicely, self interested. As I said to Gordon once, if Thomas were one of characters in Kubrick's film 'Spartacus', at the end of the film, he'd have stood up and shouted, 'well I'm not bloody Spartacus!'
7 Nov 2007
I am 9 and my brother Duncan is 7 and he is autistic. I like him, he is fun and we are best friends. We like to play together with my other brother on our trampoline and to run around and to go on our scooters and bikes. He likes to play with his trains and he likes it when we read stories to him. He's good at drawing and doing things on the computer. He doesn't like big bangs or when me or anybody else cries. I don't think his autism is a problem.
I have sent this to the NAS and hopefully it will be put up on the site someday soon. It might just make people think differently about the assumption that siblings suffer so much due to autism.
1 Nov 2007
I have acquired the Case Notes of a case of Autism that John Melnychuk, RSHom (NA) claims to cure. These Case Notes were anonymised by John Melnychuk and were presented at a conference as well as being available on the web, I am assuming that all necessary permissions were sought by John Melnychuk, the organisers of the conference and the owner of the website. They make for distressing reading and are presented unedited below (apologies for length):Case Notes by John Melnychuk;
A Simple Case of Autism
John Melnychuk, R.S. Hom. (N.A.) CCH
This case is written nearly verbatim and in the order the mother gave the case. (small changes made only to enhance readability.)
Initial consultation 9/19/05 K.S., Six year old boy. Both parents bring him to my office complaining that he has Autism and that he is violent to others.
We sit down and I observe: K. presented with paroxysms of noise and motion. Small stature, large head. Beautiful. This small stature is related to digestive impairment secondary to gut injury. Large circumference head is commonly found in autistic individuals. Autistic children are usually very beautiful – long lashes, big eyes, and symmetrical faces – perfect in appearance, (more commonly so where cancer is in their genetic history).
He is the son of Japanese American immigrants. Father speaks almost no English and did not contribute much verbally to the case taking. Father, restaurant owner and chef. Mother helps with business, former professional dancer, now an accountant. One older brother – M., age 8 who is well. Maternal grandmother provided and provides a great deal of care.
The mother says:
History of hitting (his own) head severely. We saw Dr. Eric Dolgin, D.O. for Osteopathic Manipulative Therapy who helped a great deal. R. ear is deaf at birth.
Conceived in America. Pregnancy was no problem. Did not know I was pregnant @ 3 to 4 weeks. Had a tooth removed under local anesthesia and took antibiotics (type unknown). Mother age 36 at delivery.
Epidural, and then delivery after doctor broke the water to induce labor. Labor was 3 hours. During pregnancy K. was much quieter than his brother. We saw immediately that he had a problem with his R. ear. R. ear was bigger than the L. ear.
After birth he stopped breathing for a short time. The doctors kept him overnight in the hospital because of this. Both boys had a bit of jaundice.
Mother had many (20) silver amalgams due to unavailability of good dental care in rural Japan where she grew up. Also did not receive good instructions on hygiene from parents. Now only one mercury amalgam is left, (others have been replaced with composite fillings).
Age 1 K. is seen smiling and waving in video tapes. Very early teething at 7 months. (carc) (Brother teethed later.) K. bit mother’s nipple to get attention. (violent).
Mother wanted to be a CPA, and got this job at K’s age of 7 months. Lots of work. She would give 3 shots of vaccines at a time because it was difficult to get away from work. She ate Doritos and Cheetos and a bad diet. (Corn chips and cheese doodles).
Mother was too busy to pay attention to any reaction after vaccines since maternal grandmother was the primary care giver at this time. No information available from MGM.
Stool was always watery since birth. Then he had yeast infections. Now the stools are good. At the beginning very watery stool and diaper filled with liquid, not smelly. Brownish yellow.
He would cry at night and kick until we changed his diet.
Sleep is much better with a gluten free/casein free diet that began last year.
His eye contact, responsiveness and attention are all better since we began the GFCF diet.
Now he takes many supplements, but it is difficult to get him to take them. Doctor wants to give 7 supplements a day. We can get 2 into him. He will take vitamins in pomegranate juice.
He climbs and is very athletic. Knows where his mother hides crackers, beef jerky, and juice.
He has hit his head quite a lot. Osteopathic Manipulative Therapy has been given with benefit.
He was less responsive by age 2. He began hitting and pulling hair this year. Also he bites. He knows pulling hair is more effective than biting. He needs help but is very violent. Mother has devised a way to hold him when he is in a rage so that he does not hurt her.
He does not like speech therapy and cries there.
Family Medical History:
Mother age 20’s Bladder infection. Mother used to be a modern dancer. Would sweat and then get a chill, then bladder infection would begin.
MGM forgetful, short-term memory poor. MGF deceased from liver cancer after drinking alcohol – whiskey, even though he was happy.
PGF died age 48 of heart attack. PGM died age, in the year 2000.
Mother’s brother is healthy at age 37. Father’s 3 brothers are healthy, but not close.
Obs: K. will lie back with his feet up in the air and play with toys – a soft anemone-like rubbery toy.
Began at an Early Start Program offered by school district at age 2.5. (This program offers speech and occupational therapy to help children who have delayed development.) He cried a lot and did not like it.
He is obsessed with leaves and likes to tear them. School has good resources and uses a “Floor Time” program. He is occasionally interested to interact with other children (but has very limited skills).
Obs: K. will “give me five” and glance at me if I ask him to.
Fear of going to the doctor’s office. Will cry. Used to be afraid of leaf blowers, bathroom fan, and the sound of video tape rewinding. Fear of new people.
Sensitivity to sounds is better since chelation, but still sensitive to sounds.
Likes smiling persons. Likes to be hugged. Likes to be upside down and standing on his head. Very good balance. He can stand on a horse that is walking. He swims like a sea otter and is very fast in the water.
Can speak a few words, but almost always must be prompted several times. Can understand Japanese and English.
He will calm down when Mozart is played. He will hit his head near midnight. No sweating or drooling. He did sweat on his head from age 2, a bit less since they removed wheat from his diet.
Food: beef, chicken, McDonald’s French fries, cereal, corn flakes.
Nursed 8 months. He quit shortly after beginning to teethe. Mother was working at the time. She still loves her job.
K. likes to be outside more than inside.
Sleeps on back on a pillow with hands above his head. Likes to sleep with brother. (This was really the only time that he showed any interest in brother. Nearly no interest or contact with brother outside of sleep-time at night.)
Will occasionally hump mother or therapist. (Masturbate). (common symptom).
Obs. K. Climbs over parents as they sit on a sofa in my office. K. Gives video tapes to parents to play for him which he does not watch. (No speech).
He takes methylcobalamine B12 injections twice a week.
History of fevers once a month for which mother would give Tylenol. K. has been doing better since OMT and treatment from DAN protocol. (DAN “Defeat Autism Now” protocol is a biomedical approach to treating Autistic individuals with vitamins, supplements, diet and pharmaceuticals).
Before he would not react to pain, but now he is reacting more normally.
History of remedies: This child had been given infrequent and hight doses of Tarentula and either Stramonium or Scorpion, (I can’t recall which) with no benefit in approximately a year of treatment.
Plan: A two part prescription:
1) Morbillinum 30C , one dose only for one day.
- gut damage in MMR injured individuals looks similar to that when the AIDS virus is present. Very syphilitic. Morbillinum individuals are miserable and cranky. (Shepherd writes beautifully about Morbillinum).
2) Beginning the next day, Cuprum metallicum 6C once daily. Seizure like paroxysms of pain resulting in violence to himself and others. Neonatal asphyxia. Vaccine injury.
What did the first homeopath miss? Likely he did not comprehend the significance of the rhythm of symptoms – paroxysms or spasms of violence. He may not have seen them as seizure-like events related to a brain injury. He may not have ranked the episode of asphyxia as being important. Certainly he did not adopt the strategy of giving low potencies daily in a case where daily life was filled with violence.
First follow up 10/24/05 by telephone with mother.
He is better than the first time we talked. We stopped the remedy at Yom Kippur and began again after. No violent reaction. He had rashes and itching with soft stools. The stool has tiny bits in it (different from before).
He is doing very well now, but he will wake after 2 or 3 hours. He cries “itai” (Japanese for “pain”), but he is less violent, although he can still be aggressive.
He had a yellow mucous discharge from both eyes on the morning of October 1st. (Keynote for Morbillinum – and in this case the discharge likely contained toxins from the vaccine and Tylenol in his brain).
Violence is reduced by 50%. His headaches at night are much reduced. Also the Osteopath noted an entirely positive qualitative change in his ability to treat K.
K. was not waking at night and crying and pulling hair or biting. It has been much easier. His ability to understand our speech is much better.
He is growing more. (He is absorbing more nutrients from his gut and therefore less malnourished.)
He still wants to go outside and is obsessed with leaves. Doesn’t want to stop watching videos or playing. Will get upset and scream when interrupted.
Cuprum is very useful for him.
Impression: Doing well. Plan: continue Cuprum met. 6C daily.
Follow up 11/21/05 by phone with mother.
He is better than last month. We gave Morbillinum 30C on the 25th of October and he had some tantrums for a week, but these were milder and shorter than in the past.
Now diarrhea is gone and it is easier for him to go to the bathroom.
The pains he feels in the R. side of his head are less severe and less frequent.
Now he is imitating us much more. (more social interest – usually the first thing to improve in such cases.)
He is not organized with homework, but he will now willingly sit at his desk instead of resisting it. (new). He needs a lot of pressure in his joints to pay attention (a common symptom in brain injury cases). He no longer resists or pulls hair, or throws things for the last 2 months.
His mood is good and he is smiling more. I stopped the chelation the last three months. I was giving DMPS transdermally. Still giving glutathione and methylcobalamine B12.
Fewer tantrums and crying. Likes roller coasters. Not screaming or pulling hair.
He can control his bladder now. Sensory and muscle control is developing. Can’t yet say “I have to go pee pee.”
Not banging his head these days.
Plan: continue Cuprum met 6C daily.
Follow up 12/27/05 by telephone with mother.
Not as good a month since his molars are coming in. He has been cranky with the pain. We gave Morbillinum on November 22nd because he was stubborn. He would not cooperate at home or school. He was better again a week after this single dose Morbillinum 30C.
After his molar erupted it got easier. Now he is doing very well – much less crying again. His father says it is much easier now. Now we can go to restaurants because his spontaneous noises are less, and he can sit at a table. Before it was like carrying a time bomb.
He has no headaches now. He can more easily repeat what he hears.
Mother is now pregnant again with 3rd child – in vitro. He doesn’t hit me or pull my hair anymore. He is not hitting himself as often.
Violence is 80% less than it was. Before it was every night. Now he is sometimes (merely) pretending to be threatening. He is not violent to his brother.
He is growing a lot taller. He is very fit and dong a lot of sports and gymnastics.
Plan: Cuprum met 12C once daily. Kreosotum 30C only if tooth pain is overwhelming.
Follow up 1/26/06 by telephone with mother.
He is much better with the higher dose of Cuprum.
Headaches moved to a place near a bump on his head and the pains seem to be moving toward the back of his head and neck.
He is now saying new words (spontaneously). He also is beginning to answer a bit in Japanese (primary language at home.)
Aggressiveness is 5% of what it was. He can stay still to study now for between 15 and 30 minutes.
Plan continue Cuprum met 12C daily.
Follow up 3/1/06 by telephone with mother.
Doing better. No headaches, no crying, unless he has wheat. Jaw pain is better in a just few minutes with an occasional Kreosotum 30C.
Still can play with leaves for hours. Loves horseback riding, gymnastics, swimming, trampoline, climbing. Appetite is much better.
Less obsessive than he was. Sleep is very good.
Plan: Continue Cuprum met 12C daily. Maintain GFCF diet very strictly.
(Gut inflammation is the last thing to be resolved in these cases and aggravating foods will delay general improvement).
Follow up early July 2006 – An in person visit in Los Angeles, the first time I have seen K. since our initial consultation in September 2005. His brother and mother attend.
K. is now very responsive to his family and teachers. He will make good eye contact. He has grown a great deal. Now K. is interested to play with his older brother and they have become quite close. (In September K. would not play or acknowledge brother. The only thing is that he wanted to sleep with his brother at night.)
Obs: Speech is delayed but much improved and social interest is firmly intact. K. continues to improve.
Plan: continue Cuprum met 12C daily.
K. is very well loved and thoughtfully cared for. Although father speaks nearly no English, his presence at our initial interview was an important positive sign in the prognosis of K. His mother presented with a very positive and sunny disposition, and she did not reveal the depth of her suffering and worry in our first visit. K. had been attacking her with little restraint due to paroxysms of violence for more than a year. Only some months later did she reveal that she had been at her wits’ end before bringing her son to homeopathy. She confessed that she had been contemplating killing her son and committing suicide herself because of his violence and lack of progress.
Note: It becomes important to accurately measure progress yourself rather than merely by report of an overly nice or polite parent in this circumstance where the parent is more well mannered and hopeful than frank.
When there is a history of violence, sudden or not, it is wise to use lower potencies and “nudge” the patient forward on a daily (or less often) basis. As well, dry doses were used because the primary care giver is elderly and unfamiliar with homeopathy. The last thing the family needed was to fuss with preparing LM potencies. Even the simple process of preparing LM’s can produce a great deal of anxiety in those new to homeopathy. They often are stewing “did we prepare the dose properly?”
What happened to this boy K.?
My perception is this is a case of poisoning.
The first clue is that K. was mostly well, apart from the deafness in the R. ear. The family history of cancer is significant – it is an indication of higher susceptibility particularly to MMR vaccine. (There are dozens of factors which increase the risk of autism – genetic history is a major issue and I am careful to gather as much information as possible about the pregnancy and extended family history in these types of cases. Different genetic inheritance yields children which are more susceptible to various types of vaccines. There are many ways for children to become autistic and there are many types and manifestations of autism according to the unfortunate combination of inherited and environmental factors).
It is very important to note that not all children will be negatively affected by vaccines, and not all autism is associated with vaccine injury, but vaccines are a factor in more than 80% of cases I see of true autism. Vaccines are an important, but usually a secondary factor in cases of Pervasive Developmental Delay.
The second clue is the fact that he stopped breathing shortly after birth. He must have been blue at least for a short time in an episode of neonatal asphyxia. (Maybe from Hep B jab?)
The third clue is the wet stools from birth. This indicates that there was already some inflammatory activity and lack of development in the gut – before any vaccines, except perhaps Hepatitis B vaccine which is routinely given shortly after birth in America. (I think this Hep. B is a major contributor to jaundice in newborns.) This digestive weakness shows that K. already had some susceptibility to vaccines and foods from birth. I speculate it was the antibiotics and other drugs that the mother received for the tooth extraction before she realized she was pregnant that contributed to this digestive problem in K.
The timeline is the fourth clue. Note that K. was observed as developing normally socially and with language to his first birthday. There is even video evidence of his normal ability and conduct. After MMR there was a slow, insidious onset of symptoms over approximately six months which resulted in loss of social interest, speech, and intolerance of foods. This is typical for MMR vaccine related autism.
The timeline here is quite typical. Several years ago the most common presentation would be of a child that was injured by MMR would have early normal development and then be affected by an MMR jab at 12 months. Most often a bit of fever or fussiness would come after the jab. Tylenol was almost always given (which always compounded the severity of the injury – don’t get me started about Tylenol….) By 18 months speech and social interest would be lost and gut problems would appear. Pediatricians would typically stall the parents – “he’s just a late talker,” etc. Diagnosis of autism or Pervasive Development Delay – Not Otherwise Specified (PDD – NOS) would come by age three or four depending on the severity of damage the child had sustained. (PDD - NOS would be a more common diagnosis where motor planning problems were more evident rather than where primarily speech and social deficits presented.)
These days the timeline is a bit different for children developing symptoms as a related to MMR injuries. Now for children where MMR is likely a factor, the onset generally comes later and the diagnosis comes earlier. What we see now is slightly atypical development to 15 to 18 months with loss of social interest and speech by 24 months. The prognosis for these children is better since their injury came later, is milder, and because diagnosis and treatment come earlier. The later onset and milder injury have likely arisen because thimerosal has recently been removed from MMR and many other but not all childhood vaccines. Thimerosal is one of many metals and chemicals commonly present in vaccines as stabilizers to extend shelf-life of the vial of vaccine. Thimerosal is more than 50% mercury by weight. The diagnosis comes earlier because Autism is a more popular diagnosis and pediatricians are very interested to make such a diagnosis even if the evidence is for PDD-NOS or some other problem. Is it clear that thimerosal is not the only problem, although it has been the focus of most of the Autism advocacy groups and most scientists and physicians.
The fifth major clue is: paroxysms of violence. K. was actually suffering from something like minor seizures which would come on suddenly and result in his attacking his mother and others.
We see that he would also strike his head. This is never a good sign and it frequently presents in cases of head or brain injury and autism. In this case K. suffered short, suddenly intense pains in the head which he responded to by pressing or striking his head very hard. (Hitting the head, or doing head stands.) So intense was his distress, without any other ability to express his suffering with language, he would strike, pinch, bite, kick and injure others, most commonly his mother.
Sometimes these children strike their heads against a wall or floor, or they use their fists or hands to strike their heads. The striking results from two things: one is that this is a proprioceptive response– similar to when you rub your knee after bumping or injuring it. Secondly, the children are trying to relieve a kind of “stuckness” in their cranium. (The brain will contract in the presence of a vaccine – think of how a slug shrivels when salted. This contraction is painful, and it slows recovery since blood and cerebrospinal fluid circulation to the brain is impaired). By beating their heads, the children are trying to free up their contracted brains.) Osteopathic Manipulative Therapy can often be very helpful to these children as it was to K. Homeopathy proved to be profoundly helpful for K. as well.
Cuprum will not be the last remedy K. will need, but he may benefit from it for the foreseeable future. The main clues about the next remedies will again be found in his family history of illness, his desire to swing, jump, swim and play outdoors. Also his fascination in tearing leaves is likely to help us find the next remedy.
My clinical experience in treating hundreds of autistic and other brain injured children has given me an opportunity to identify common features with autistic children, their history, and their prognosis.
In general the children:
- Are uncommonly beautiful, and have symmetrical faces, frequently with long lashes. May be quite hairy down the spine.
- Are usually small in stature, but with a large circumference head.
- Usually have at least one special talent or ability and also some definite areas of deficient functioning.
- Usually at least above average intelligence if not gifted.
- Have their entire physiology impacted – it’s not just social disinterest and speech delay.
- Benefit greatly from gluten free and casein free diets.
- Love to eat what aggravates them.
- Generally don’t absorb nutrients very well and this delays recovery; they are malnourished. It is therefore important to address this in treatment from the beginning. Most biomedical approaches focus on this. (DAN protocol, etc.)
- Frequently have problems eliminating – gut problems are usually present.
- Exhibit stimming behavior. Examples of stimming are repetitive arm or hand flapping, spinning, swinging.
- Feel better from deep pressure. (But simply giving zinc usually yields disappointing results).
- Find transitions very difficult, moving from one activity or location to another usually leads to an upset.
- Prefer to be outdoors rather than indoors. Circle time at school is not interesting.
- Love music and videos. Frequently they can sing before they can talk.
- Are echolalic at first when speech begins to return. Echolalia is a very common feature early on when speech begins to return. Echolalia is the name for the behavior where the child will repeat only what he has been prompted to say. It’s a good sign, although the parents are frequently upset and frustrated by it.
- Retain ability to receive language . Expressive language is more the problem.
- Recover social interest first and this drives their interest to speak.
This is bizarre and worrying and frightening and desperately sad for the child involved. Various unproven theories of autism causation are discussed; mercury from fillings and of course the ubiquitous baddy, vaccinations.
There is so much to take issue with.
The boy is said to be beautiful, and it's claimed that all autistic children are beautiful, especially 'where cancer is in their genetic history.' My son is beautiful, and that's my entirely biased opinion. My 2 non-autistic children are just as lovely. It's nonsense and distancing to write that autism is linked to 'uncommon beauty' as if they are somehow 'other' from ordinary humans. And where has he pulled the 'hairy back' theory from?
K is described as small due to 'digestive impairment secondary to gut injury.' How does he know? Has he read a report from a gastroenterologist regarding the boy, but failed to mention it? There is a reference to practinioner of 'Osteopathic Manipulative Therapy' and to a doctor of some kind who 'wants to give 7 supplements a day.' I don't think that this 'doctor' is a registered GP or paediatrician. I wonder if the boy has been seen by any proper doctors. Who diagnosed him? What about his right ear, has there been medical assessment of that?
There is much discussion K's stools and the other altie-obsession, yeast. The GF/CF diet has worked as well as it usually does in parent testimonials.
This line made me smile, 'He climbs and is very athletic. Knows where his mother hides crackers, beef jerky, and juice.'
That sounds familiar! Duncan seems to have some sort of sensors that can detect sugar no matter how well you think it's hidden. Perhaps I should get him some magic water too.
This line is not so sweet, 'Fear of going to the doctor’s office. Will cry.'
It's more chilling when you read a few lines later that 'Sensitivity to sounds is better since chelation'.
It's no surprise that K is afraid of doctors' offices. He has not had good experiences there. Duncan is worried about seeing the dentist ever since he had a tooth removed. He likes seeing doctors in the hospital we usually attend, as he knows he can play with cool toys there. These things are not hard to understand!
Another observation is that K 'will occasionally hump mother or therapist. (Masturbate). (common symptom)'
I wonder what he means by 'common symptom.' Does he mean common to autistics or common to boys? What's the relevance anyway?
Here is a list of the therapies poor K has been subjected to, before setting foot in Mr Melnychuk's consulting room;
- Osteopathic Manipulative Therapy, 'helped a great deal.'
- GFCF diet. 'His eye contact, responsiveness and attention are all better since we began the diet'
- Many supplements and 'vitamins in pomegranate juice'.
- Early Start Program offered by school district; speech and occupational therapy. 'School has good resources and uses a “Floor Time” program.'
- DAN protocol of vitamins, supplements, diet and pharmaceuticals. 'K. has been doing better since OMT and treatment from DAN protocol.'
- Homeopathic remedies: infrequent and high doses of Tarentula and either Stramonium or Scorpion with no benefit in approximately a year of treatment.
How, I wonder, was his pain dealt with? That isn't pursued.
We also are told that 'He is growing more. (He is absorbing more nutrients from his gut and therefore less malnourished.)'
Children usually do grow at 6 and 7 years of age, even without magic water helping them along.
In the next telephone consultation, pain is mentioned again; 'The pains he feels in the R. side of his head are less severe and less frequent.'
There is another reference to chelation, and a few more things from the smorgasbord of non-evidence based autism interventions; glutathione and methylcobalamine B12.
In the final assessment, K. is said to have improved in many areas, he has grown, he studies more, is less aggressive, plays with his brother, speaks and understands more language. The quantification of these improvement is truly bizarre. Where do these numbers come from? ('Violence is reduced by 50%...Aggressiveness is 5% of what it was.')
It's interesting what happens to a 6 year old child in almost a year! Even if some of the therapies the boy has been subjected to have had an effect, it's impossible to tell what has helped since there are just so many.
The most disturbing thing about the whole case report however, is Melnychuk's reaction to K's mother telling him that she had contemplated murdering her son then killing herself. He writes,
'Note: It becomes important to accurately measure progress yourself rather than merely by report of an overly nice or polite parent in this circumstance where the parent is more well mannered and hopeful than frank.'
He does not recommend that she sees a doctor herself for counselling or therapy. He seems to accept this revelation as acceptable.
The rest of his 'perceptions' are full of inaccuracies, mistakes and invention.
Why does he think a family history of cancer is important? What has that got to do with MMR? He reckons, 'vaccines are a factor in more than 80% of cases I see of true autism.' How does he know this? He says, 'The later onset and milder injury have likely arisen because thimerosal has recently been removed from MMR and many other but not all childhood vaccines.' Wrong! MMR vaccines have never contained thimerosal.
He talks about the pain K. suffered from; 'So intense was his distress, without any other ability to express his suffering with language, he would strike, pinch, bite, kick and injure others, most commonly his mother.'
What investigations were made to discover the source of this pain and to treat it properly?
I have read some downright nonsense since I started looking at autism quackery. This statement deserves an award for the most ridiculous claim ever; 'the children are trying to relieve a kind of “stuckness” in their cranium. (The brain will contract in the presence of a vaccine – think of how a slug shrivels when salted.'
Give that man his prize quick!
He ends with 17 observations from his 'clinical experience in treating hundreds of autistic and other brain injured children.' Some of them may be true for specific children, but mostly, he just made them up!
I am focusing on this because I am disgusted that homeopaths think they have any right to 'treat' autism. As I said when I commented on Gimpy's blog, I had thought that homeopathy was fairly harmless, merely silly magic water sold to the worried well for self-limiting conditions. I had thought that while it was important to try to let people know that there is no evidence of its effectiveness, the fact that there is zero active ingredient in these pills/liquids means there would be no real harm done. However then I read about the homeopaths advising their magic water for malaria prevention, or to be used in clinics in Africa to treat real serious illness, or that homeopaths advise against vaccines for babies, and now this!! They have managed to delude themselves into thinking that their bottles of water and sugar pills, every one of which is identical when you remove the labels, can cure rashes, fevers, fatigue and now they reckon they can tackle more serious illnesses and even developmental delay. This is dangerous. It has to be recognised and dealt with. Thank you Gimpy for bringing this to light.
Joseph left a comment on an earlier post about homeopathy and autism. It turns out that there's a book recommended as essential, by those promoting homeopathy as a treatment for autism. I think we'll manage without it.
30 Oct 2007
There's a quiz where you can test your knowledge of autism, and a campaign pack giving more information. Please take the time to have a look and to share the link.
When I was wee (ie, a child) we'd have a bonfire on Halloween night in the field across the road from our house. A load of cousins would turn up, and we'd eat loads of nuts and fruit and wear scary plastic masks (no other dressing up) and wave sparklers. It was always good fun, even if you ended up with cow dung on your wellies since you couldn't see where you were walking in the dark field.
Thomas intends to dress up as the not very scary, Harry Potter. What a surprise! Duncan has been wearing his Captain Hook outfit every day for over a week. He's worn it to all the shops, his Grandma's house, the swimming pool, and very dashing he looks too. I think Lady will wear her witch dress. I'll just be my hideous, evil and horrifying self. Look on me, and turn to stone...
Right, well. I have to give a big congratulations to my big brother T. He ran his first ever marathon in Dublin on Monday, and got round in 3 hours 39 minutes. What a guy! So hooray for him!
27 Oct 2007
Yesterday he was playing on YouTube. I found him a lovely film of the story, 'Where the Wild Things Are' which he and Thomas watched many times. Then he found some videos of Dogz 4 pets, including one of puppies. He's decided he wants his dogs to make puppies, so we're trying to make the John and Jane dogs fall in love!
Google is his friend. He uses the toolbar, and types as few letters as possible, then scans the suggested search words, to find the one he wants. It's helping him learn to read and spell. Sometimes he doesn't spell things quite right, but it's always a very good effort, 'cheez and unyin crisps' isn't too far wrong!
He can now decode really well when we read together. And I find it interesting, that after he works out the words bit by bit, he re-reads the whole sentence so it is smooth and makes sense. It's also clear that reading is and will continue to help his spoken language. Often he works out a word and seems to realise for the first time, 'oh that's how it's said' when he can see all the letters that he just wasn't able to hear somehow.
Today I dropped Lady and Thomas off at their jujitsu class and took Duncan with me to an enormous hardware shop. I had to buy a mousetrap. (I'd been reading in bed the night before when a little mammal intruder scuttled out from under my wardrobe door, then in again. There wasn't much I could do at the time except block up gap to try to contain it.) I choose a live trap thing so if it works, we'll have to release it away from the house. Duncan was fine, and had fun with some singing and dancing Christmas stuff, and a Jack in the Box (well teddy in a box really) which made him shriek with delight. When I'd sorted the purchases, he insisted in leaving the shop the way we'd entered, even though there are separate entrance and exit doors. I realised that he always does this now. When we're in the supermarket, we have to push the trolley back through the shop, instead of along the back of the checkouts. It's a funny little thing to need to do. But it's easy enough to manage. I hope he won't feel the need to leave the way he came in if we ever visit the new Ikea when it opens!
23 Oct 2007
James Watson has fled back home after shooting his mouth off just a bit too much. He was hardly a paragon of decency before he made his frankly racist, sexist and disablist statements to the press last week. It's surprising to realise the manner by which the Science Museum and other organisations decided not to give him a platform, as if they were unaware of his reputation for thoughtless and inflammatory views.
This is the Times quote that caused the most fuss;
He says that he is “inherently gloomy about the prospect of Africa” because “all our social policies are based on the fact that their intelligence is the same as ours – whereas all the testing says not really”, and I know that this “hot potato” is going to be difficult to address. His hope is that everyone is equal, but he counters that “people who have to deal with black employees find this not true”.Watson also seems to hold autism up for particular opprobrium. In the Times article, he talks of the “horror and destruction” of life that can arise from having a severely autistic child, and hopes that by diagnosing autism early, “we might prevent some [autism-prone] families having subsequent children”.
So he thinks Thomas shouldn't have been born then? Obviously he thinks I should have been able to prevent Duncan's existence. What a foolish idea!
Watson was quoted on the Autism Speaks page saying “Autism is the worst thing that can happen to a family.”
Yep, that's right, he just claimed that autism is worse than murder or child abduction or fatal illness or abuse or drug addition or anything really. That's a horrible thing to say.
He's made other ugly statements before;
For instance, he believes abortions are acceptable where a foetus is found to be genetically inclined to homosexuality.Someone should tell him about all the gay parents out there. Would he advise abortion on fetuses found to have a genetic inclination to have fertility problems, or if their genes could predict that they may be heterosexual and child free by choice?
"If they want to, let them," he said. "My wife really wants a grandchild."
I don't understand this idea that parents should be able to decide what kind of child has the right to exist.
I was most surprised by the sheer number of people who came out in support of him. Most of these quoted his 'right to free speech' claiming that by denying him a platform, the Science Museum, and others, were trying to gag academic freedoms to ask difficult questions. That doesn't make sense. He's free to say what he wants, but that doesn't mean he gets to say it in any particular institution. I also think that the maxim, extraordinary claims require extraordinary evidence, must hold true here. In spite of oh so many commenters on various liberal-leaning sites, crawling out to harp on about IQ tests showing that Watson was right, others have pointed out the numerous flaws and biases in such tests.
There's a summary of the events in the Guardian here, which includes the reaction of Craig Venter;
As Craig Venter, who pioneered much of America's work in decoding the human genome, put it: 'There is no basis in scientific fact or in the human gene code for the notion that skin colour will be predictive of intelligence.'Some good posts on these events are;
A Twisted Life and Twisted Logic by Club 166.
This and this by Evolution blog.
This at Pure Pedantry.
Emma is a beautiful, blonde haired, former model. There end the comparisons to Jenny McCarthy, who has done the round of USA talk shows plugging her book about her 'recovered' autistic child.
McCarthy blames vaccines for her sons autism and uses her celebrity status to spread her misinformed inanities. Here are a few choice quotes from her interview with Larry King. When he asked for a definition of autism, she answered,
Wow! Well, it differs for a lot of people. But -- or opinions. But I believe that's -- it's an infection and/or toxins and/or funguses on top of vaccines that push children into this neurological downslide which we call autism.She was asked if she'd have more children, and said,
I got my butt kicked. You know, it was really hard those years. Pulling Evan out of the window, I call it. I suffered a lot. I cried a lot. I'm just ready to move forward. I'm ready to help out. I'm ready to spread the word. I'm ready to make this world a safer, cleaner place.
You get the picture.
McCarthy is the new face of quackery pushing autism organisation, TACA. As an example of their ethos, here's their sample 'To-do check list' for parents of autistic children. Among the many non-evidence based services mentioned (for the 1st year), are secretin, glutathione and chelation.
Emma Noble has not taken this self-serving route, and just gave a really sweet interview. The fee for the interview was donated to the NAS, a decent autism support charity, and one I'm happy to be a member of. The NAS does a lot of work to improve the lives of autistic people, both children and adults, and parents or carers of autistic people. Here are some highlights from the Mail article;
"My life would be empty without my son and the experience we have been through together. His autism makes him who and what he is and I love him.
"He makes it easy for me to accept because he makes me proud every day, proud of his achievements and of how hard he tries.
"There is no part of me that mourns the mother I could have been to a son without his condition. I simply don't know that person."...
Emma reveals: "Harry needs to know what is going to happen and in what precise order. There can be no surprises and definitely no dramas.
"For example, he needs me to tell him what is going to be inside a wrapped present before he opens it.
"He pictures it to be something that he wants and then, if it's not what he had in his mind, he can't understand what went wrong.
"When he goes to bed he might have to touch the curtain a specific number of times and then similarly flick the light switch, climb the stairs in a particular way, ask if the cats are in their room, check the hall light is on and that the door is open at precisely the angle he wants. And he might make these checks 20 times.
"If he's worried he's done them wrongly, he'll have to get up and start again. And he's very literal....
She refuses to ask "Why Harry?", saying: "I could tear my hair out every night wondering why. There is no autism in either family and Harry did not have the MMR jab because I knew there was controversy over potential links to autism, which is ironic, really, given that he has it anyway.
"What I do know is that the number of children with it are creeping up every year. Whether that's because the incidence is rising or because we have better diagnostic tools I don't know. But I do know we have to deal with it and I hope I am now sufficiently informed to help.
"I don't want to betray Harry but it's only a matter of time before someone asks about my connection to autism and I have to tell them I have been gifted an autistic son and that I feel blessed to be his mum."
..."I want people to understand that autism doesn't mean a lesser life, just a different one.
"I want people to know just how wonderful these very special children are and how much joy and love they bring to the lives of those lucky enough to know them."
How lovely is that! Emma Noble, thank you for your beautiful words.
18 Oct 2007
It transpires that this same woman is an occupational therapist trainee, and works in this play club. She recognised Duncan as soon as we came in. It's quite a coincidence, Fanad isn't exactly a bustling metropolis!
After the boys had settled in (Thomas was staying to play too) Gordon, Lady and me had an hour to spend together. I can't remember the last time we did this. Frequently each of the children spends time with either Gordon or myself, but not with both of us. I was reminded of the few times my mum and dad took me out for a meal on my own, when I was 14 or so, and how special I felt to have them to myself!
The boys had fun and made cakes of chocolate, marshmallow, biscuits and golden syrup. Duncan, obviously, enjoyed this activity a lot!
We didn't want to go home straight away, since we were having such a nice day. So we picked up some chips for lunch, then decided to take the train into Belfast. We dootered round the shops for a while, bought a few more sweets (have to keep the sugar levels up) and went home. Gordon and I were amazed at how well Duncan did. He held our hand, and enjoyed the trip out.
On Tuesday I took the children swimming, and like last time, it was a great success. Lady can already swim quite well, though she's never had any lessons. I will take her alone a few times to help her improve her style. Thomas was like an eel; jumping in and diving under. He managed to propel himself forward by a few metres. He has taken some big steps out into the world lately. He's definitely not the baby of the house any more.
Yesterday Gordon took a day off work and I convinced him that a family day out to the aquarium would be nice. It was too. The drive down along Strangford Lough is just so beautiful, especially on a sunny autumn day like yesterday. As expected the aquarium was very quiet, and Gordon spend a happy few hours discussing genetic diversity with Lady and a (not too interested) Thomas, while I took care of Duncan. The last time Gordon went there, the place was packed as the school were out, and it was all a bit stressful.
These trips out together are very important. Duncan is slowly becoming calmer and more manageable. He still sees things he wants to have, but we can now negotiate better about what is and isn't acceptable. He's continuing to develop, and we can really foresee how he will continue to do so as he gets older, just like all children, though on his own trajectory. It's also important to have the public get more used to seeing a non-typical child out with his family and having a good time.
15 Oct 2007
Now I read about a 15 year old English girl with cerebral palsy, called Katie Thorpe. Her mother, Alison, wants her to have a hysterectomy and explains why in the Times;
“We already have to do everyday things for Katie that most people do for themselves,” said Thorpe. “Katie has an undignified enough life without the added indignity of menstruation. She will not understand what is happening to her body and it could be very frightening for her.I think this is important; the reasons stated here do not in any way, justify a major surgical procedure, with a long recovery time, and life long after effects. I really fail to see why menstruation is considered such an indignity. In practical terms, it would be a few mls of blood once a month or so, added to the pad Katie already must wear.
“Katie would be totally confused by menstruation. She could not manage it by herself.
She could not keep it discreet, she cannot be private. What we need to do for Katie already is undignified enough.”
It's evident from the numerous newspaper and TV interviews given my Alison Thorpe, many of which show photographs of Katie, that Katie has not started her periods yet, and there is no mention of a medical problem that would call for hysterectomy as a treatment. There is no reason to suspect that she will have painful periods, or if she has, that painkillers would not help. There are also other, much less radical and invasive approaches available in the event that Katie does has extremely painful periods. I don't think that any doctor would be wiling to perform this procedure when it appears to be medically unnecessary. At least I hope not.
There have been several references in the media to Katie's 'mental age', stated as 18 months in some articles, 6 months in another and 3 months in another. The Mail journalist writes;
She has no need for a womb. People would be horrified at the thought of a baby menstruating, but that is what Katie is. All she will know is further discomfort and confusion.
Whatever her cognitive functioning is, she is not a baby, she is a teenage girl. She has a right to bodily integrity, just like any other teenage girl according to the UN Convention on the Rights of Persons with Disabilities,
Article 17 - Protecting the integrity of the person
Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.
From what I have read, most people giving their opinion, think that Katie's mother should have the right to decide. As a home-educator, I want minimal interference from the state in my duties to raise and educate my children, in accordance with the law and my personal philosophy. Parents have the right to make judgments for their children, and the state must presume that parents know best. It's an 'innocent until proven guilty' thing. However, when it is clear that a parent is not doing the right thing, like failing or neglecting their child, then the state has a duty to step in and make inquires and if warranted, take action. Likewise, if a parent decides that they want their child to have a totally unnecessary surgery, the state has a duty to that child, not to give the parent authority to allow it to happen. That the child is disabled should be irrelevant. Parents sometimes are wrong no matter how much they love their child.
Hating is acting in a way you know will hurt a family via their seven year old autistic daughter.
Left Brain/Right Brain was probably the biggest (and in my opinion, the best) autism blog on the net and it's author, Kevin Leitch, has become a friend too. I've been reading his blog for years and it has helped me immeasurably. Kevin and his wife have had to make the difficult decision to close the blog because of their valid fears for their daughter, who has been used as a target of abuse and shocking written attack by a hating individual. I am very upset at what has happened. I support their decision and wish them and their beautiful children the very best.
The Autism Hub may have to take another form, but the blogging will continue. Many of us, especially the parents of autistic children who have started blogging, have been directly influenced and motivated to do this by Left Brain/Right Brain. So even if that blog has sadly ended, and how I will miss it, the writing will continue.
12 Oct 2007
This isn't what I write about, there are many great bloggers tackling bad science stories, but this is just disgusting, and like many others, who intend to high-light the heavy handed antics of the SoH, I wanted to link to the story, and copy the post here. It's currently available on Google cache. There's more about the whole incident on David Colquhoun's blog. (I managed to name check Gordon's favourite lecturer in a post!)
Here's the post from The Quackometer;
The Society of Homeopaths (SoH) are a shambles and a bad joke. It is now over a year since Sense about Science, Simon Singh and the BBC Newsnight programme exposed how it is common practice for high street homeopaths to tell customers that their magic pills can prevent malaria. The Society of Homeopaths have done diddly-squat to stamp out this dangerous practice apart from issue a few ambiguously weasel-worded press statements.
The SoH has a code of practice, but my feeling is that this is just a smokescreen and is widely flouted and that the Society do not care about this. If this is true, then the code of practice is nothing more than a thin veneer used to give authority and credibility to its deluded members. It does nothing more than fool the public into thinking they are dealing with a regulated professional.As a quick test, I picked a random homeopath with a web site from the SoH register to see if they flouted a couple of important rules:
48 • Advertising shall not contain claims of superiority.
• No advertising may be used which expressly or implicitly claims to cure named diseases.
72 To avoid making claims (whether explicit or implied; orally or in writing) implying cure of any named disease.
The homeopath I picked on is called Julia Wilson and runs a practice from the Leicestershire town of Market Harborough. What I found rather shocked and angered me.Straight away, we find that Julia M Wilson LCHE, RSHom specialises in asthma and works at a clinic that says,
Many illnesses and disease can be successfully treated using homeopathy, including arthritis, asthma, digestive disorders, emotional and behavioural difficulties, headaches, infertility, skin and sleep problems.
Well, there are a number of named diseases there to start off. She also gives a leaflet that advertises her asthma clinic. The advertising leaflet says,
Conventional medicine is at a loss when it comes to understanding the origin of allergies. … The best that medical research can do is try to keep the symptoms under control. Homeopathy is different, it seeks to address the triggers for asthma and eczema. It is a safe, drug free approach that helps alleviate the flaring of skin and tightening of lungs…
Now, despite the usual homeopathic contradiction of claiming to treat causes not symptoms and then in the next breath saying it can alleviate symptoms, the advert is clearly in breach of the above rule 47 on advertising as it implicitly claims superiority over real medicine and names a disease.
Asthma is estimated to be responsible for 1,500 deaths and 74,000 emergency hospital admissions in the UK each year. It is not a trivial illness that sugar pills ought to be anywhere near. The Cochrane Review says the following about the evidence for asthma and homeopathy,
The review of trials found that the type of homeopathy varied between the studies, that the study designs used in the trials were varied and that no strong evidence existed that usual forms of homeopathy for asthma are effective.
This is not a surprise given that homeopathy is just a ritualised placebo. Hopefully, most parents attending this clinic will have the good sense to go to a real accident and emergency unit in the event of a severe attack and consult their GP about real management of the illness. I would hope that Julia does little harm here.
However, a little more research on her site reveals much more serious concerns. She says on her site that ’she worked in Kenya teaching homeopathy at a college in Nairobi and supporting graduates to set up their own clinics’. Now, we have seen what homeopaths do in Kenya before. It is not treating a little stress and the odd headache. Free from strong UK legislation, these missionary homeopaths make the boldest claims about the deadliest diseases.
A bit of web research shows where Julia was working (picture above). The Abha Light Foundation is a registered NGO in Kenya. It takes mobile homeopathy clinics through the slums of Nairobi and surrounding villages. Its stated aim is to,
introduce Homeopathy and natural medicines as a method of managing HIV/AIDS, TB and malaria in Kenya.
I must admit, I had to pause for breath after reading that. The clinic sells its own homeopathic remedies for ‘treating’ various lethal diseases. Its MalariaX potion,
is a homeopathic preparation for prevention of malaria and treatment of malaria. Suitable for children. For prevention. Only 1 pill each week before entering, during and after leaving malaria risk areas. For treatment. Take 1 pill every 1-3 hours during a malaria attack.
This is nothing short of being totally outrageous. It is a murderous delusion. David Colquhoun has been writing about this wicked scam recently and it is well worth following his blog on the issue.
Let’s remind ourselves what one of the most senior and respected homeopaths in the UK, Dr Peter Fisher of the London Homeopathic Hospital, has to say on this matter.
there is absolutely no reason to think that homeopathy works to prevent malaria and you won’t find that in any textbook or journal of homeopathy so people will get malaria, people may even die of malaria if they follow this advice.
Malaria is a huge killer in Kenya. It is the biggest killer of children under five. The problem is so huge that the reintroduction of DDT is considered as a proven way of reducing deaths. Magic sugar pills and water drops will do nothing. Many of the poorest in Kenya cannot afford real anti-malaria medicine, but offering them insane nonsense as a substitute will not help anyone.
Ironically, the WHO has issued a press release today on cheap ways of reducing child and adult mortality due to malaria. Their trials, conducted in Kenya, of using cheap mosquito nets soaked in insecticide have reduced child deaths by 44% over two years. It says that issuing these nets be the ‘immediate priority’ to governments with a malaria problem. No mention of homeopathy. These results were arrived at by careful trials and observation. Science. We now know that nets work. A lifesaving net costs $5. A bottle of useless homeopathic crap costs $4.50. Both are large amounts for a poor Kenyan, but is their life really worth the 50c saving?
I am sure we are going to hear the usual homeopath bleat that this is just a campaign by Big Pharma to discredit unpatentable homeopathic remedies. Are we to add to the conspiracy Big Net manufacturers too?
It amazes me that to add to all the list of ills and injustices that our rich nations impose on the poor of the world, we have to add the widespread export of our bourgeois and lethal healing fantasies. To make a strong point: if we can introduce laws that allow the arrest of sex tourists on their return to the UK, can we not charge people who travel to Africa to indulge their dangerous healing delusions?
At the very least, we could expect the Society of Homeopaths to try to stamp out this wicked practice? Could we?