Misguided lobbying
Perhaps I’ve been deliberately avoiding it, albeit subconsciously.
Perhaps it’s just something of a fluke.
Whatever lies behind it, it’s fair to say that I’ve never read the various sites on the web that advocate that Autism is a curable disease, and that vaccines cause autism.
That’s changed today, and has proven to be something of an eye opener. At the tail end of last week, I supplemented my Google Reader list with some custom streams from Google News, gathered from some ASD-related search terms. This threw a number of pages at me this morning, some of which were on websites I’d not seen before.
I’m not going to name them, because I’m a strong believer in free speech, and they are entitled to their opinion. I have to say, though, that what I read horrified me.
My own investigations of my Asperger’s have lead to something of an inevitable conclusion – that Autism Spectrum Disorders are genetic, and that they flow through families. I say inevitable, because I can see signs of other family members having ASDs. In addition, my different ways of thinking are so deeply ingrained and natural to me that I can’t believe that they are purely a learnt behaviour, nor the effects of some vaccine gone wrong.
Living in the UK, it is impossible to have escaped the Vaccines cause Autism debate over the last few years. Indeed, in the years before my own discovery of AS, my wife and I chose to have our son vaccinated privately so that he could have separate Measles, Mumps and Rubella jabs. I’d researched what little there was of the pros and cons online, and personally didn’t believe in the suggested link; but my wife did, and I was happy to do what was needed to put her mind at ease.
In the years since then, it seems that a whole industry of new sites has been born which are far more organised and more professionally run that the information that used to be available. The sites I saw today argued very strongly that both MMR and other vaccines were behind autism, and that we were on the verge of an epidemic of autism that was caused by the vaccines.
Wow. These websites appear to be thinly disguised lobbying tools. The apparently well-meaning adults who write for the sites appear to predominantly be parents of children who have been diagnosed with ASDs. They feel that their viewpoint – that vaccines caused the autism in their children – is right, and they passionately want to change the world view. They are on a crusade.
Well, the purpose of my site has never been one of lobbying nor a crusade to change anyone’s mind. I present the facts as I see them – just as their sites do – but I hope that those who visit mine will make up their own mind. I speak as someone who is affected by Autism, not as a well meaning, but neuro-typical adult. I seek the understanding of others. I don’t want to change the world, and I certainly don’t want the websites I’ve seen today to claim to be speaking for me.
Incidentally, as a parent, I find it very easy to see how you could think that vaccines cause autism – I really can.
After all, vaccines are given to children at around the age where symptoms of ASDs often start to show.
Every child develops in different areas at different speeds. My son, who is now five, has always been great at motor skills, such as riding a bike without stabilisers before his fourth birthday, but got his colours wrong until very recently. My daughter, who has just turned three had already got colours mostly sussed, uses a broader vocabulary than her brother did at the same age, but is less good at the motor skills. This is normal. My daughter has the occasional toileting accident, despite having been potty trained during the day for well over six months. Again, this is normal. I think you have to look at the big picture. Both of my kids are coming on in leaps and bounds.
But could I see this when they were a year old? If you really think about it, it’s only at that sort of age that children really start to communicate with you in any way that isn’t smiles or crying. They’d learned to sit up and crawl, sure. They also made repetitive single syllable sounds. But beyond that? It’s much more difficult to see real progress. So I personally find it difficult to see how someone can really see regression in a one-year old, who has just had the MMR jab.
If you were brought up without the strong grounding in science and logic that I have, it is easy to turn better detection of autism disorders into an epidemic that doesn’t exist. After all, when I was growing up, there was no diagnosis of Asperger’s Syndrome. School teachers weren’t on the look out for kids that had ASDs – indeed the autism label was really just applied to kids on the very profoundly affected end of the range.
That doesn’t mean that it didn’t exist though. I had Aspeger’s when I was a dazed seven year old at school wondering why everything was so confusing. I had it when I was born. But I wasn’t one of the Autism statistics in those days. And guess what? I’m still not. I don’t have a formal diagnosis, yet I still have Asperger’s.
Like me, many tens of thousands of adults are realising they have an ASD every year. Not because they have been vaccinated then developed a condition, but because they’ve always known they have something different about them, and they are now empowered to find out what it is due to the wonders of the Internet and books that have been published. These are not new cases of Autism. These people have always had it.
It is also absolutely true to say that more children are being diagnosed with autism than ever before, but logic says that anything other than this would be absurd. Far more is known about autism now than even fifteen years ago, so more and more of those like me, who would have slipped through the net when I was a child are now being diagnosed at a young age.
An autism epidemic? Give me a break. It’s just more comprehensive diagnosis.
What I’ve read today has shocked me. These people seem determined to persuade the world to adopt a misguided view of Autism disorders. What’s more they seem to be sending a message that vaccines in general are bad, which is likely to lead to more deaths of children in the long term, as measles makes an unwelcome return.
And what about their poor children? Instead of being accepted for who they are, it would seem that they become part of a freak show, with the drug companies as the bad guys. Asperger’s isn’t a terrible thing to have – it just means you are different from the norm. I remember how I felt growing up. I can’t imagine what it must be like to grow up like that but to think that your differences were caused by an injection you had when you were a year old. How depressing – you will forever think that you could have been ‘normal’ if it wasn’t for that injection, and you’ll always have hope that the next special diet or treatment you try may remove the autism.
What I’d like to see is better understanding of those who are affected. I’d like money to be spent to provide help to those who need it. I sure as hell don’t want sites like those I saw today claiming to represent people like me.
I think, however that they might just have pushed me into action. I’ve seen a few autism advocacy sites, and I’m going to read more and look to offer them my support in some way.
Incidentally, by the time my daughter was due her MMR, the big holes had appeared in the Wakefield report, and we elected to give her the tripple jab. My son has also since had his MMR booster, as the tripple jab this time.
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8 Comments to “Misguided lobbying”
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James, I agree with you 100%. The idea that autism is a disease that needs to be cured is insulting and short-sighted. I have no problem with treatment to help autistic people, especially those on the severe end of the spectrum, but for neuro-typical people to confuse effective treatment with a cure is to be very mind-blind, if you ask me.
On Friday, I saw a report by an American researcher that claims that intensive behavioral therapy can cure autism in 10-15% of autistic children, if the therapy is begun before the age of 7. The researcher claims to have studied children who were “definitely autistic at age 2″ and who are “definitely not autistic” at age 9.
Why? Because they learned to make eye contact and be sociable. They got more flexible. They don’t get frustrated as easily. They get along with their peers.
Well, guess what? Me too. Really! I even have friends and everything. Does that mean I don’t have Asperger’s? Give me a slight break.
Thanks for this post, James. It’s a great one.
Diagnosed at age 2? I really can’t see how that could be possible. I think it’d be difficult to be sure even with a five year old, unless they were profoundly affected.
It’s really sad that so much well-meaning but misguided effort is being channelled in an unhelpful direction.
This movement has got to be one of the worst things to happen to the human race in the past 100 years. Imagine if we still lived with polio, or small pox. These diseases have virtually been eliminated. Once again people have too few things to worry about that a blatant internet lie has grown into fear about the very things that protect us all as a community. When I was a kid (30 odd years ago) I never heard of anyone getting measles. Now we have outbreaks. And I am sorry, if Jenny McCartney’s kid is now supposedly cured of autism, he never had it to begin with.
If we ever do have a serious outbreak of something that a vaccine becomes available for I hope Jenny and Jim stick to their guns and don’t get it.
Please let me apologise if this seems a harsh view point, but this has bothered me for a long time. I don’t understand how some people refuse to listen to the plain and simple facts of this matter. There is no debate. ASD is not caused by thiomerisol in vaccines.
Agreed.
I do find it easier than you to see how someone without a scientific background could be taken in by claims such as thiomerisol causing autism.
Look how uneducated people have reacted over the years to other ideas such as mercury amalgam tooth fillings. I’ve read new age ‘facts’ about how salt is bad because it contains chlorine. Really.
Viruses cause the flu. Germs get spread through coughs and sneezes. Vaccinations mean that you are injecting a bit of the disease into the recipient. The MMR contains a bit of three diseases and we inject it into kids who are just over a year old. Can their immune systems take it?
Yes, but it’s easy to see how parents could be worried about this, after all, it all sounds very scary.
Add to that they adults start to notice problems with the development of their autistic children in the months after the MMR is given, and I for one can see how they blame the vaccine and themselves for the condition.
…and I’m rambling a bit, so I’ll stop.
p.s. – looks like people are fighting back against Jenny McCarthy – see here.
“In addition, my different ways of thinking are so deeply ingrained and natural to me that I can’t believe that they are purely a learnt behaviour, nor the effects of some vaccine gone wrong.”
If they were, would you know any different?
It might not just be the age of vaccination that makes people think this way. ISTR reading that families of ASD children are much more likely to have allergies, or autoimmune illnesses, etc.
If I’m honest, I’m surprised it’s taken this long for someone this long to pull me up on this comment. I knew even when I was writing it that I couldn’t really justify it in pure logic.
You are right Anna, chances are that even if it was caused by a vaccination, I would still feel that it was natural.
I see far too much evidence that it runs in families to conclude the vaccines are involved, however. And what about those children that Dr Asperger described in the early 1940s? I still don’t buy the vaccines link for one second.
Your comment about allergies intrigues me. I’m going to go and do a search about it now…
Sorry, I did think you probably knew, but I couldn’t help myself!
Sorry I don’t have a specific link about autism and immune disorders/allergies, I just seem to have heard it a lot. I did find this http://www.scientificamerican.com/article.cfm?id=are-immune-system-molecules-build-brains&sc=rss
I have read there are a lot of anecdotes from parents about autism improving when the child has a fever. http://www.time.com/time/health/article/0,8599,1889436,00.html
What I was trying to say was that if families of ASD children have a higher rate of immune problems like allergies or autoimmune illnesses, then maybe the child is more likely to have some kind of reaction to the vaccine, and then because they see the reaction, they link it to the autism, IYSWIM. i.e. the child was already autistic, and then also had an allergic reaction to the vaccine. Perhaps that scenario is possible?
I also read that allergies and asthma have increased, but I don’t know how certain that information is.
After reading your post this morning I visited a cure website, and I was interested that they linked to a video that claims vaccines and mercury are not to blame. This doctor mentions a study done looking at the brains of dead autistic children (died in accidents) and says they looked like the brains of people with Parkinson’s or Alzheimers. http://www.tarzanacme.com/video.asp?VidID=notautism
I think I can understand your desire to avoid this topic.