Musings of a Marfan Mom

Guest Post from Kirsten


April is Autism Awareness Month. Like last year, I’m featuring a couple of guest posters to share their experiences with autism. Today I’m happy to introduce you to Kirsten, who I “met” through a great autism parents’ group online.

Since the start of Autism Awareness Month, my Facebook wall has been full of ranty-type posts about how anyone who does not believe in the notorious vaccine-autism link is anything ranging from misguided to stupid, and how autism charities that do not support the vaccine theory are evil money-grabbers.

As an autism mom who does not believe in the vaccine-autism link, I have been feeling very much in the minority. I know that there are other parents who share my views, but we tend to be a quieter lot, we non-vaccine-link-believers. Many people on the other side of the debate fully respect my right to hold my own opinions, but on many occasions, I have been confronted with people trying very hard to make me feel guilty about the vaccination choices I have made for my children.

I am going to put it right out there. Both of my children are fully up to date in their vaccination schedules. I chose vaccinate my younger son at a time when this debate was rife, even after my older son had been diagnosed with autism. I do not regret this decision in the least, and I would do it again.

You see, my firstborn son George did not develop autism. He came out of the womb with it. Perhaps he suffered a drop in oxygen supply during childbirth, when his heart rate dropped to below sixty beats per minute. Perhaps a genetic roll of the dice went against his favour – an explanation that is increasingly likely, given that my own early childhood development mirrors George’s almost to a T.

As a first-time mom, I did not want to think that there could be anything wrong with my child. Although I knew from very early on that something was not right, I lived in a state of blissful denial. I hopefully scoured those checklists that tell you what your baby is supposed to be doing by what age. When most of the little boxes stubbornly remained unchecked, I told myself that developmental ranges were so broad, and in any case, everyone knew that boys tended to achieve milestones later than girls.

One day, when George was only just starting to master the art of sitting unsupported, I tried a little experiment. I sat him on the floor, supported by a nursing cushion to help him stay upright, and surrounded him with all kinds of toys. This kid did not play in the way I had seen other babies play, and he showed very little interest in anything. I wanted to put a lot of different things within his reach to see if anything would grab his attention.

With growing dismay, I watched my baby completely ignore one thing after another. The pile before him grew and grew, and no matter how much I waved things in front of him and made silly noises, he just didn’t engage with anything. There was a brief moment of animation when I put a toy train beside him. He pressed the big green button on top of the train and, seemingly enthralled by the resulting lights, he did it a few more times. Then he went back to his state of disinterest. After a while he got fidgety and I had to put him back into his Jolly Jumper, which was one of the very few things he was visibly interested in.

This incident – and others that highlighted George’s delays – did not happen right after any vaccinations. If anything, the needles tended to outrage George and cause him to be more animated than usual for a couple of days.

Since George was exclusively breast-fed for the first four months, during which time I was meticulous about what I ate, I cannot blame his autism on diet. It is just something he was born with, even though I did not want to recognize it at the time.

I would never presume to tell another parent what did or did not cause their child’s autism. I think it is quite possible that in certain cases, vaccines can cause developmental delays. I do not believe that the scary increase in autism rates over the last decade can be attributed to vaccines.

There are many things that I could mention in support of my views, like the fact that Andrew Wakefield, who proposed the link in the first place, had a clear conflict of interest. Or the fact that when vaccination rates dropped sharply in the UK in response to the Wakefield study, autism rates continued to rise. But that is not the point.

The point is this: I believe that as a society, we are making a mistake in searching for a single cause of autism. This could well be one of those conditions that has multiple causes. Cancer, for instance, can be caused by genetics, smoking, exposure to certain foods or chemicals, improper healing after an injury, or any number of other factors.

In the same way, maybe autism can be caused by genetics, food intolerances, air pollution, or other things including, in some cases, vaccines.

I question whether we should be so hung up on what causes autism, because no matter how much money is thrown at this, we may never know. What we do know is that early detection and intervention vastly improve the odds for children with autism. Perhaps that is where we should be putting more of our focus. This is why my fundraising efforts are focused on a charity (the Geneva Centre for Autism in Toronto) that concentrates on services for people with autism, rather than on research.

I am not suggesting that all research should be halted. In the interests of knowledge, we have to continue to learn as much as we can about autism. I do think, though, that as autism rates increase, so do the needs for services. Our children would surely benefit if we put more dollars towards creating a better life for them.

Kirsten Doyle is a transplanted South African who has lived in Canada for twelve years. She is Mom to two boys aged six and eight, and her older son was diagnosed with autism five years ago. Kirsten is a great believer in autism services, having seen her son make 23 months worth of gains during his first year of ABA therapy. Every year, she raises pledges and runs a half-marathon to raise funds that go towards services for children and youth with autism. To read Kirsten’s blog, visit Running For Autism. You can also connect with her on Twitter (@running4autism) or Facebook.

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