Thursday, March 19, 2009

more businesses and organizations for neurodiversity to boycott

I see that as part of autism awareness month, the reviled (by the ND movement) autism speaks is pursuing massive fund raising involving several different organizations. For those, such as myself who regularly read the blogs on the autism hub we see that a few bloggers have urged a boycott of Lindt chocolates. The reason for this is that they have teamed up with autism speaks and are donating a portion of their proceeds on each sale of chocolate to AS. It would seem that Lindt is not alone in this endeavor. The following companies have also teamed up with AS in some capacity:

Toys"R"Us, Inc., TJ Maxx, Modell's Sporting Goods, Build-A-Bear Workshop®, Discovery Health

I wonder if hub bloggers will start writing posts to boycott all of these pristine companies. In the United States, Toys 'R' us is one of the biggest retailers of children's toys. Wonder if their children will cry tears, when they are told, they will have to go without a toy for Christmas, because they are claiming that AS is deliberately trying to abort autistic fetuses and all the other nonsense they espouse.

One wonders at what point, the ND's will have to wear barrels because every clothing manufacturer is teaming up with autism speaks. What will happen when various grocery stores and restaurant chains start teaming up with autism speaks. Will they go on a hunger strike, will they die of starvation? I can't wait to see what happens.

I don't know whether or not the true prevalence of autism is rising. It is possible that the increase may be partially real because more men are becoming first time fathers at later ages. There has been research showing an association between paternal age and the likelihood to father an autistic child. There is also a temporal relationship between autism and the passage of special education legislation at least in the u.s.a. and possibly other countries as well. Whatever the reasons more and more persons are being diagnosed with autism than ever before. I don't know if the prevalence will rise to greater than 1/150 persons or not.

The point is that the more persons diagnosed with autism, the more interest there will be in funding science that may lead to preventing autism in children and possibly finding a cure. For that reason, more and more businesses will be teaming up with autism speaks and donating money to them, much to the chagrin of the neurodiverse. Neurodiversity may claim they comprise a good portion of the autistic community or even the autism community. In reality they are a fringe group whose view is out of the mainstream. Most persons who are touched by autism support autism speaks' agenda of trying to find a cure and prevent this tragedy from happening to other children. So, as more and more enterprises start teaming up with autism speaks, one wonders whether the crusade against Lindt chocolates will be expanded to these other enterprises. How many consumer goods will the ND's deprive themselves of? Only time will tell.

However, one member of the ND movement, Michelle Dawson, apparently does not want to boycott autism speaks, at least not when money to fund research she is involved with is concerned. Her mentor Laurent Mottron mentors post-doctoral fellow luc Keita who works on a grant from AS. Also Michelle has coauthored at least one paper with Jocelyn Faubert, a scientist funded by AS. . I am baffled as to why Michelle would not consider this money tainted, why she would not resign from the Mottron lab in protest. Yet, her fellow ND's still cherish, her and her writings. Michelle is not considered a quisling (a term more than one ND proponent has called me) or a sellout.

So I guess for all those reasons I will have to wait and see what and who the ND movement boycotts next.

14 comments:

Autism Reality NB said...

Great post Jonathan.

JediKnight2 said...

ROFL!!!

Here's an autie's translation on why he'd want to boycott Toys R' Us:

"I didn't play with toys from Toys R' Us when I was little since I was trying to come out of my own little world through speech therapy, so I don't see why I couldn't boycott Toys R' Us and that Jar Jar Binx look-a-like mascot giraffe, Geoffrey!"

The average Aspie's translation would be something along the lines of "Ba humbug!!! Toys R' Us is for "noisy" NT kids!" (when sensory issues he has is his own damn problem, yet denies wanting to be cured).

I guess I should attempt to boycott places where many disabled people work such as supermarket chains like Publix (in Florida, Alabama, Georgia, South Carolina and Tennessee) as many disabled people work there, and I could be a possible candidate in the future.

SM69 said...

Autism is on the rise- a study (unpublished for political reasons) conducted in Cambridgeshire (Simon Baron Cohen) across a population of over 10,000 (14,000 I think) children showed an incidence of 1 in 59. The official rate in UK is 1:100. Yes there is better awareness at the milder end of the spectrum, yes there are people with ASD who get married and have kids that tend to be more affected than they are, yes there are many undiagnosed people with Asperger S in adults, yes, there are adult people with autism who were wrongly diagnosed and in institution, but the bulk of today’s kids are in much greater number than they have ever been. And they present with medical issues. This is a new phenomenon. Autism Speaks is able to generate funding (actually I am looking into this for one of our own research proposal), and this has nothing to do with abortion of ASD fetuses or the sort of none sense we can hear, I would agree with you. People are very confused at times.

Droopy said...

Yoko Ono also supports AutismSpeaks

http://news.yahoo.com/s/afp/20090316/en_afp/unhealthautismartonopeople_20090316221603

(Maybe they'll boycott her too)

SM69 said...

On the autism prevalence issue… some news from the UK... I better go back to sanding my floor...

That’s a coincidence the study I mentioned yesterday hit the press in the evening of the very same day… even though the study has been done more than a year ago. It’s interesting to see how information on autism is being filtered through and the timing at which it’s being used. Very interesting also to show how the explanations behind this rise are being twisted.

-----

Autism Rates Rocket - 1 in 48 British Boys - Cambridge Study
March 21, 2009 childhealthsafety
"Cambridge University study figures show 1 in 48 British boys has an autistic condition, which is already costing the UK £28 billion per annum: “One child in 60 ’suffers from a form of autism” By Sue Reid, Daily Mail, UK 20th March 2009. The new study authors advise Government services planners to revise calculations of child service provision on a rate of 1 in 60 British boys and girls, but 4 in 5 cases affects boys."
If this concerns you, write to your political representative - see end of article for how to.

Read on for more:



http://www.dailymail.co.uk/news/article-1163606/One-child-60-suffers-form-autism.html


One child in 60 'suffers from a form of autism'
By Sue Reid
Last updated at 11:33 PM on 20th March 2009
Far more children have autism than previously thought, a study of British school pupils has found.
Researchers now believe as many as one in 60 children has some form of the condition.
The disturbing findings, which are due to be made public within weeks, mean that up to 216,000 children in the UK could suffer from an autistic condition, although many have not yet been diagnosed.
The research could have a major impact on public services in Britain with many more youngsters potentially needing a lifetime of special care.
Autism covers a spectrum of developmental disorders which affect a person's communication and social skills.
Families caring for severely autistic children say their lives are devastated by the condition, and looking after sufferers of autism and related disorders already costs the nation £28billion a year.
The latest study, by academics at Cambridge University's respected Autism Research Centre, involved thousands of children.
Controversially, it showed autism rates were nearly twice as high as the figure of one child in 100 which is currently accepted by the National Autistic Society.
It also surpassed the one in 87 figure revealed by research among south London pupils three years ago, which was published in the Lancet medical journal.
Cases of autism have significantly increased over the past 40 years.
In the 1980s, for example, a study found only four in every 10,000 showed signs of childhood autism.
The Cambridge study, led by Professor Simon Baron-Cohen, states clearly that the apparently higher rate found recently is down to better detection and diagnosis.
The outline results of the professor's research have already been revealed at a major international conference of world experts on autism, although they have not yet been formally published.
The audience in London was told that autism spectrum conditions have shown a 'steady increase' over four decades.
The researchers conclude that a figure of one in 60 gives an accurate picture.
They estimate that one per cent of children - one in 100 - are known to have an autistic condition.
But, significantly, they say that for every three known cases, there are two unknown. This equates to five cases in every 300 children - or one in 60.
'This has implications for planning, diagnostic, social and health services,' the researchers told the conference.
Benet Middleton, of the National Autistic Society, yesterday welcomed the study's findings, saying: 'It is very likely there are people affected by this complex condition who have been completely overlooked by education and health officials and remain undiagnosed.'
The Mail understands that two possible lower rates of autism among children - around one in 74 and around one in 94 - are also cited in the study.
These were estimates made by statisticians to compensate for missing data - for instance, when parents failed to return survey forms.
Even these lower rates, which were not mentioned in the study's conclusion, would still have a significant impact on schools, social services, and the NHS.
Anti-vaccine campaigners have previously claimed a link between autism and the MMR triple jab given to children aged between 12 and 15 months.
However, the Department of Health has dismissed the idea and Professor Baron-Cohen said: ' Environmental factors such as chemicals and children's exposure to testosterone in the womb are a more likely cause.
'At this point, one can conclude the evidence does not support the idea that MMR causes autism.'
Yesterday he declined to comment on the new findings, which will be published in the British Journal of Psychiatry.
Dr Richard Halvorsen of Baby-Jabs, a private vaccination clinic in London, told the Mail this week: 'The Cambridge figures are very concerning.'
In the U.S., President Barack Obama has just launched a multimillion dollar offensive to combat autism and find its causes.

jonathan said...

Very interesting also to show how the explanations behind this rise are being twisted.

Well if you have an explaination other than vaccines (disproven) greater awareness, changes in diagnostic criteria. Or as I have posited in my writings a temporal relationship to changes in special education and commercialization of lovaas in spite of lack of adult outcomes and other questionable issues, then I suggested you tell the world of autism afficianados what it is. I am sure they are waiting with baited breath

SM69 said...

Your style of communication is like a knife to others; but I am used to this (not from you but from people like yourself). I will ignore this and yes take up your challenge though I’d like to do this in pictures. I’ll try putting something together, maybe tonight, maybe tomorrow. I will not make any assumptions on your open mindless and the usefulness of me spending time explaining this, I might fail bringing any argument you might consider having any sense worthiness, but I don’t mind, you’ll have more fun putting yet more knifes out. I am a good target, people enjoy doing this to me, or maybe I enjoy find people who are just having a good time in such way. Have fun in expectation and watch this space.

jonathan said...

well my dear skymaker, i will be sharpening my daggers, switchblades and cutlry, awaiting your return.

One other point that I believe is pertinent regarding the study you quote is that it comes from Simon Baron-Cohen, a man who says that I, a man in his 50's never had a girlfriend, can't make a living, severe perceptual motor problems, in special ed until age 14 does not have a disability. He also got this advice from the deranged foul-mouthed david andrews (if you think i have metaphorical knives, try having a debate with this character on the internet sometime).

Also, Baron-Cohen is a man who claims that autism has stayed in the population due to evolutionary advantage in spite of all the evidence pointing towards spontaneous mutations. A psychologist, with no training in genetics who does not know the most rudimentary principles of genetics making these bold comments.

Until Baron-Cohen's results are replicated by a more credible scientist I will consider the source and take this study with a pillar of salt

SM69 said...

Well I am back!!!! Even if you are still mocking me; at least now it's funny.!

I have put a post on my blog with pictures: you can view it here.

http://skymaker69.blogspot.com/

I paste some of the text here:

Rise in autism prevalence-

Data compiled from recent epidemiological studies- note that accuracy of study vary across countries. Figure 1-

In the 80s, official rates were round 5 children per 10,000 population (Figure 2).

Incidence rates increased by 700% in children born in 1990 compared to those born in 2006. Hertz-Picciotto and Delwiche, The rise in autism and the role of age of diagnosis. Epidemiology 2009; 20: 84-90


Possible factors implicated:

1- Greater awareness and diagnosis criteria- Cannot explain the current rise. E.g. Figure 3

Figure 3: 8.2-fold increase over 1980-83 to 1995-97
Report: January 2005

2- Genetic issues (Broad autism phenotype)- Asperger in the family, often undiagnosed.

Actual contribution to current rates is unknown but has been estimated at about 7%. The family history is seen as far as Asperger and HFA is concerned but rarely as far as regressive autism is concerned.

Many genetic studies in autism have been undertaken draining huge amount of funding. What has been found is:

• There is a higher rate of chromosomal abnormalities in a subset of autistic children compared to controls.
• These include inversions, duplications and deletions visible by microscopic techniques.
• They have been found within all 23 chromosomes, but most commonly on chromosome 15 and 7.
• Based on location, a causal association might be inferred but has not been proven.
• This could account for up to 7% of cases.

Autism does not fit pattern for “classic” genetic diseases

3- What else? Genetic-environmental factors

Figure 4:

The response or ability to cope with toxins across the population can be modelled with a normal distribution curve (Figure 4). This is true of many exposure, e.g. alcohol, some individuals will tolerate it well, other not. This particular sensitivity results from both environmental and genetic factors. This is true of all animal and vegetal species. Response to environment differ from individual to individual within the same species. Some species are more sensitive than others in a give environment. Canaries were used in the coal mines to detect rise in carbon monoxide (Figure 5). They were more sensitive than humans with regard to this factor. Their death was indicative of increased toxicity.


If the outcomes of rising toxic environmental factors in genetically susceptible individuals is autism, the number of affected cases would rise with the level and number of factors as shown below (Figure 5).

What could these factors be?

- Testosterone in the mother- Little evidence supporting the theory of testosterone being implicated in autism- see post on the subject here.

http://skymaker69.blogspot.com/2009/01/autism-and-testosterone-full-response_20.html

- Vaccinations: Epidemiological studies suggest no implication. Equally many epidemiological studies have disproved tobacco to cause cancer. Thalidomide was not found to cause developmental abnormalities from epidemiological studies.

What is needed is to investigate children and their progression in autism. A few cases were investigated, suggesting strong correlation with vaccination, Poling, Bailey and more. More importantly, seeing parents of children with regressive autism, day after day, saying very similar stories of immediate deterioration after vaccination raised at the very least great concerns. In a group of 60 children, 18% were found to have loss and acute loss of function within 1 week of MMR (ATT report). The possible scenario of regression can take place more gradually and over and longer period of time and would not be picked up following parental account. We currently have no markers to prove or disprove of an association for cases of regressive autism with gradual and slow loss of function.
- Other factors: many factors are known to be toxic and found in increasing amounts in the environment. Heavy metals, bi-phenyls, phtalates, organo-phosphates, etc. Many are still unknown.
- Likely we have a combination of factors, again acting on genetically susceptible individuals.
- Autism is not the only condition that is found in much greater incidence; also rising are: ADHD, asthma, MS, chronic fatigue, Alzheimer disease, cancer and more.

How could these factors deteriorate development and behaviour:

A very common genetic feature in families of children with autism is a greater immune vulnerability. This is seen with increased rate of the following conditions: allergies, asthma, eczema, arthritis, MS, thyroid dysfunction (often associated with auto-immune abnormalities).

The sum of environmental factors would constitute a stress (or insult) to genetically susceptible individuals, affecting either primarily their immune system, their gut or more directly their brain.

It is also very likely that there will be epigenetic changes leading to alteration of gene expression- this could have the highest effect still on development and brain function.

Studies are ongoing to unravelled each of these potential scenarios. Cascades of events leading to deterioration of brain function can be identified in animal models and as paradigms (with each single step being documented and published in autism).

jonathan said...

I read your post. It is just recycling old information. You have not answered the question of how anyone is twisting around what really happened. I thought you were implying you had some earth-shattering answer or proof as to what was causing the rise in autism diagnoses assuming it was something in the environment. You have presented no new evidence whatsoever.

I will check out your blog and your photos when I get an opportunity, but I think I know who you are now.

SM69 said...

1- Increasing proof of rise.
2- Increasing evidence that the genetic studies have failed to find genes.
3- Increasing evidences of immune dysfunction in autism.
4- Increasing evidence of environmental factors affecting development and the immune system.
5- I forgot in my earlier post: increasing evidence of good outcomes of treatment. (we have not several kids officially off the spectrum, and we are not the only one).
6- Increasing scientific understanding of how the immune system, the gut, the metabolism relate to brain function and vice versa.
7- Epigenetic can explain everything in autism.
8- Good understanding of the many forms ASD takes, recognistion that traits and HFA can run in families (not on the rise)

I do not need to convince you, and unlike you, I do not need to attack you.

jonathan said...

Hi, i don't believe I attacked you, sorry you took it that way, just some levity maybe.

I will comment on your first point that genetic studies have failed to find genes. I don't think this is true, they have found associations with DiGeorge syndrome, a gene on chromosome 22, there is also fragile x. There are also autosomal dominant genetic conditions found in association with autism in conditions such as tuberous sclerosis. The problem is, there are many different things that are called autism with many different genetic etiologies, so no way will any one genetic etiology ever be found. This does not dispute at least a partial genetic etiology for autism. I have written about this in one article you can find on my jonathans-stories webpage. here hope you read it.

I don't know enough about the other points to comment, only the point was to show that there was something in the environment that triggered geniune increases from a prevalence of 1 in 2500 to 1/150 (or the UK figure of 1/100). So far it seems to me this proof has been lacking and you have not provided it. I am not saying it definitely did not happen, only no one has provided any proof. Yourself included. I seem to remember reading you are some sort of DAN practitioner and they generally don't seem to submit any of their findings to peer review. If you have proof of something in the environment causing this increase I suggest you publish it in a peer reviewed journal.

SM69 said...

Jonathan

DAN! practitioners usually are clinicians and most clinicians (but not all do not publish). I am a scientist by training and I am now in a position to get funding for research, this is something I could not do until now. I have 7 projects in various stages of writing. We will get at least 1, out these, I hope 2, one is not about Biomed but about using augmentative communication device, it will work, totally exciting. Like yourself, I deeply regret that not enough research is being done, but unlike you, instead of criticism, I act! Fingers crossed though to get the funding. I will not continue my current work unless I can do some research, that’s one thing I know for sure.

Fragile X- yes of course, but hey here is an interesting fact, in the late eighties, the incidence of ASD kids with Fragile X was about 8%, that is 8% of the kids with autism had Fragile X (many studies published consistent with one another). Today <1% (I have done this, but also others). And can you explain why a genetic stable proportion of today’s population would be less represented? It’s because what we have today is not more of the same kids (i.e. this is not better awareness, Hey SBC, do you hear?). BTW, Simon BC does not know about disability in autism, apparently he does not really count the 60%+ regressive autism cases either (I have taking him up on that).

I don’t know what you think but whilst knowing what happens to 1% of the autistic population might be in some way important and interesting, I would rather more focus on the rest of today’s population.

I don’t mind if you and people like you cannot see what is very obvious. I prefer to focus on demonstrating things. Evidence base. So, I will stop this discussion at this level, no matter how much more provocation you continue to add to it. I’ll check your link at some stage.

SM69 said...

Went through your post but will read it more later on tonight. Two things I’d like to say, spontaneous mutations, did you read the report from the genetic studies in autism showing more changes, nucleotide etc./

• There is a higher rate of chromosomal abnormalities in a subset of autistic children compared to controls.
• These include inversions, duplications and deletions visible by microscopic techniques.

linking to more exposure to environmental factors and/or less ability to repair changes (that could relate to oxidative stress).

Also ethnic groups- Somalia- immigrants from that country have a very rate of autism, I meet a new Somalian family nearly every week at the clinic. There was a report in the NY times last week on that subject. Chances are high that they have a higher susceptibility to develop autism (for genetic reasons). 8% of our kids are Somalian- we don't have 8% of the UK population originating from this country. The autistic kids tend to be very affected, almost always non verbal, and with profound behavioural impairments. Always regressive autism.