Over the last few days I’ve had a flurry of activity in the comments sections of some of my older posts regarding mercury and Rashid Buttar in particular. Most of the commenter’s believe that I am being very unfair to Dr Buttar and am not taking responsibility for my daughters biomedical needs (yes, that old chestnut again). Here’s a few choice quotes:
I am so very grateful that my daughter and son-in-law were dedicated from the very beginning to find a cure for Gavin. It has been a long hard journey and well worth the effort!! And Gavin is not the only recovering autistic child. There are lots of others. With your atitude, Megan will not be one of them and she and her grandmother will most likely miss out on that joy! Such a shame.
In my opinon, by attacking this problem with just therapy, and supplements and not by chelation to remove the Mercury and the other heavy metals is giving your child nothing more than a bandaid …you have left your child in a lonely austic world that keeps him isolated from his family and loved ones.
Your dead wrong about Dr. Buttar and the children of the parents that listen to you are the ones that are really being banned! Banned from a typical life that is available through what you label as quackery. They will not benefit from mommys with hairy armpits and daddys with ponytails that like to get all wrapped up in movements.
NONE OF HIS TREATMENTS WERE DONE ON A WHIM. They were and still are being done responsibly. And Gavinâ€™s life has changed dramatically from the age of 2 to the present age of 7 next month, FOR THE BETTER! [ed - thats right, this poor kid had been 'treated' for 5 years and the family thought that was normal!]
There’s a lot of heat and not much light generated in discussions like these. We all have our beliefs and entrenched positions and I’ll be the first to admit, I give as good as I get in situations like this. I’m not one for being polite and humble when someone starts ranting all over my blog.
Beliefs vs Research
If you read through the comments in their entirety you start to notice patterns in thinking and behaviour from a lot (if not all) of these people – the threads themselves move and resolve themselves in a consistent fashion. People such as the above *believe*. They don’t look at the science as they believe it is tainted, they don’t think the situation through in a critical way as they’re caught up in the emotion of the situation. I can totally empathise with that as I used to be exactly the same. Here’s a quote from me in my first ever post to this blog.
Megan was born on 17-02-00 weighing slightly more than usual. The first few months of her life were totally normal- we didnâ€™t feel concerned about her health or well-being at all. That changed however when she had her DTP jab. I know thereâ€™s been a lot about the jabs (particularly the combined MMR jab) in the news but we (or rather I, Naomi was a lot more dubious than me but I managed to convince her) decided to go ahead with it and on the night of her first lot of jabs Megan began projectile vomiting and developed a temperature that peaked at 102 degrees. We phoned for an Ambulance and took her to A and E where they brought her temperature down, then told us they couldnâ€™t find much wrong with her. We were relieved but by the end of that week we knew something was wrong with Megs. She seemed subtely different. There was nothing you could put your finger on as such but the difference was there, she was late walking and was uncomfortable around others.
Looking back on that now it seems an almost alien time for me. I knew nothing about autism or autistics and I knew nothing about the ways of thinking logically and examining carefully *all* the variables (or as many as possible) in any given situation. Its only as I’ve increased my exposure to both scientific evidence and actually talked to a lot of autistics that I’ve learned that applying critical thinking to the theories regarding autism is vital. Take the above quote from me: I talk about how ill Megan was that night and she was but the only connection between her illness and the DTP jab was the one we made in our minds. Subsequent examinations of our daughter revealed no damage at all. I also talked about ‘knowing something was different’ but really, I didn’t. I’d already decided that the DTP jab was the culprit and my judgement regarding Megan’s ‘difference’ was then formed retroactively, based on that erroneous assumption.
After that realisation I decided that we needed to try and put Megan’s needs first and not our own selfish need to find a cause – Megan was/is autistic and our energies needed to be redirected into finding a cause into finding a way to intervene in the situations that cause her problems.
We were firmly in that pattern and it was only gradually, and only after abandoning the *belief* system in favour of the *research* system, that we started to see significant changes in the areas Megan needed help in. I’m not entirely comfortable discussing private medical issues on a public blog but suffice it to say Megan’s main area of concern in the triad of differences were social, emotional and communicative. But these are ASD, these are not however, specific problems. Specific problems can and should be targeted. A specific problem based on Megan’s communication problems is getting her to communicate so _thats_ what we work on. We don’t try and remove the autism as it can’t be removed. If I could offer one piece of advice to parents with newly diagnosed kids its this – abandon your *beliefs* in favour of *impartial research*, identify the *specific problems*, not the *general condition* and formulate interventions to address those specific problems. In that whole process however, I freely recognise that this most difficult part is abandoning belief in favour of research.
Its difficult as it means that you have to apply rigorous scientific criteria to everything that touches your children’s lives. This means:
1- Is it logical?
2 – Is it peer reviewed?
3 – Has it been published in a respected Journal?
4 – Is it safe?
5 – What are the known and suspected side effects?
Why are these things important? Because if a treatment has not been tested or peer reviewed or had data about it published then it is *an unknown quantity*. It is everybodies free choice to use whatever they feel comfortable about using but I think it is irresponsible for me as a parent to use a treatment that little to nothing is known about. I also feel its my duty as the parent of an autistic to inform other parents of autistics of anything – either positive or negative – I’ve personally found out about a particular person, treatment or system.
Its also interesting (and a little disturbing) to see so much odd belief _about_ autism. Some people believe that stimming is painful for autistics! Some people believe that bowel and digestive problems are symptoms of autism. Some people believe that the symptoms of mercury poisoning and autism are the same. I find it bewildering how anyone could believe any of these things as they are simply not true. But it all comes back to the power of *belief* over *research*. Whilst these people believe they have thoroughly researched the issues, a lot of the time they haven’t. What they actually do is research until they find a theory that fits with their own beliefs. Again, I can understand why thats an attractive thing to do but its simply flawed logic. if you want to be in the best position to know what stands the best chance of helping in a given situation you must abandon your beliefs and be prepared to look objectively at the science. You must accept when studies you thought were sound were not and you must accept that a study without peer review or a treatment without published data is useless and potentially very very dangerous.
A lot of comments lately have found humour in the idea of a global autism rights movement. They seem to feel that autism is all about children. they also seem to feel that the autistic rights movement doesn’t want help or interventions where they are needed. Again, this is down to belief over research. A lot of families may read the odd book by Temple Grandin and assume they know everything about how autistics think and feel when nothing could be further from the truth. Reading books by Temple Grandin gives you an idea of how Temple Grandin thinks and feels. Nothing more.
I find it worrying that so many parents, grandparents, godparents and siblings are so unprepared to accept the fact that their son/nephew/grandson/brother is autistic and will be for life. I find it worrying that they don’t do more to research what its like to be an adult autistic and most of all I find it incredibly worrying that to them the idea of autistics having rights is a source of humour.
Autism is not your enemy. It is not anyone’s enemy. It simply is. The comorbid conditions that sometimes occur in some autistics such as ADHD, Tourettes, Irlen Syndrome, lack of speech/communication, etc are all situations in which we as family members can and should intervene. The nature of that intervention however is vital. An emotive belief based response such as Chelation, crystal healing or any of the other myriad of ‘cures’ that exist won’t help at all. All the video recordings of ‘progress’ in the world don’t change that – these aren’t evidence, they are anecdotes. They don’t take any other variables into account and they aren’t undertaken in scientifically rigorous environments. If you make the choice to go ahead with these things anyway then thats your choice. All I’d ask is that you be honest with yourself about the effects these things really have. If a treatment you are trying has lasted 5 years can you really say that its working? How do you know its not just down to child development?
When full scale attacks are launched on autism, then to me that equatable to launching full scale attacks on my daughter and my friends. When people talk about curing autism I see that in terms of the removal of the person my daughter is. If you remove the autism you remove my daughter. Thats unacceptable to me.