In June of 2003, I opened my blog with these words:
Megan was born on 17-02-00 weighing slightly more than usual. The first few months of her life were totally normal- we didn’t feel concerned about her health or well-being at all. That changed however when she had her DTP jab.
I know there’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 couldn’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.
2003 was the height of the vaccine/autism scare in the UK and the US. Rumours (heavily fuelled by a UK media looking for the next ‘shock’ story and a US media looking to uncover the next ‘watergate’) about the various vaccines our children took were spreading like wildfire and I was as credulous as the next parents.
Our daughter had had an undeniable reaction to her DTP jab and we…we had a consequent overreaction and made an association where there was none.
Why did we do that? For a number of reasons really. First, we’re not scientists or doctors. Second, we were still in the ‘grieving‘ stage in that we had only very recently received the official diagnosis of autism and were reeling as a result – ready to clutch any straw. Third – we were totally ignorant of the personalities and politics behind the autism movement. We assumed everyone with the title ‘doctor’ would be rigorous, objective and honest.
At the time, our overreaction led us to some extreme thinking. We even made a claim for damages to the Vaccine Damage Payment Unit. One irony of this event was that by the time the claim was processed and inevitably rejected we had long since abandoned the idea that vaccines had any bearing on causing our daughters autism.
Over the following five years I’ve read about, commented on and blogged about so many aspects of the various autism/hypotheses that I think I could probably write my own book on the subject (if I had the gumption and inclination) but one thing remains clear to me above all else. There is nothing that is accessible to ordinary parents to spell out the science in clear English. Some may claim that’s dumbing down science. Tough luck. Dumb it down then. Parents need to understand it. I was lucky that I became acquaintances with parents of autistic kids who were also scientists and who were able to explain the science to me so I could blog about it effectively.
Something else that would’ve been invaluable would’ve been a book like Paul Offit’s Autism’s False Prophets.
Its a very strange feeling to read a book that you have literally lived. I know many of the events intimately. I know the names, beliefs and attitudes of many of the books ‘characters’ very well. I have debated/argued and been threatened by many of them. My daughter’s name and disability has been reviled by some members of the groups they have set up.
In later posts I hope to discuss particular issues in more depth but in this initial post I wanted to say who I am and explain my point of view. I also wanted to make a very general point about scientists.
Paul Offit (and several of the ScienceBlog bloggers) have set a standard. It is not acceptable for scientists to not participate in debates of this magnitude. You must get involved. You must speak clearly, using language the majority of people understand. You can do this via consultations with parents, via blogs, via interviews with media and when you serve on local or national government bodies.
You need not engage directly with the quacks who peddle autism quackery. Do not debate them directly. But demand equal air time. Write to local papers. Hold vaccine-education clinics. Hold autism-education clinics and invite autistic people to speak. Do not feel you have to listen to anti-vaccine rhetoric just because its coming from the mouth of a poor, poor autism parent.
And let me tell you another thing too. There are far worse things in the world than autism. Measles for example can kill people (and has done, twice in two years in my country). Mumps can make boys infertile. Polio can kill, maim and cripple children. Whooping cough can kill children. Personally I’d rather my child was autistic than y’know, dead.