I have been reading some excellent blog posts by some great bloggers recently that have got me thinking, which is the whole point, I suppose. Firstly, Laura at Life in the House That Asperger Built gave her take on the recent news that the court case involving a girl with a rare mitochondrial disorder developed symptoms of autism following vaccinations had been settled in her favour. I’ve talked about the fear I felt when I took Cubby for his MMR, but Laura gives an informative and analytical post that is the antithesis of my wishy-washy vague approach to the whole vaccine debate. It is excellent.
Then in Welcome to the Mad House, my friend Fi talks about her take on the issue of environmental triggers. And again here. It is both tongue-in-cheek and fascinating. There subsequently followed a very interesting discussion in the comments about autism, anxiety and the influences of environmental factors. While I firmly believe that Pudding’s ASD is a result of genetics, that she was born this way, at the same time I do think that there was also an environmental trigger. If I think that she had an environmental trigger for her variety of autism, that does mean I’m open to the idea that there are other triggers, and other varieties of autism too. There probably is an allergic kind, a premature/ difficult birth kind, an autoimmune kind, and other exposures too that would tip the balance in somebody already genetically prediposed.
So what is Pudding’s story? For the first 18 months to 2 years of her life, she developed just like other kids her age. She met her milestones right on target, and never gave her pediatrician any cause for concern. Having said that, from birth she was a sensory seeker, she was demanding, and her language developed in a different way to her peers. Pudding was a happy kid though, living a calm life where she was number one, and had all the attention she wished for. Spectrummy Daddy and I both feel that had things remained that way, we would have continued living in blissful ignorance of Pudding’s differences until she began school, or possibly even later.
That wasn’t to be though. Cubby was born a few months after she turned two, and suddenly life changed for her. Here was a screaming infant whose cries hurt her ears, and took attention away from her. No longer was mummy providing the same level of stimulation and attention, and when she got bored, she got herself into trouble. To make matters worse, a few weeks later we moved, leaving behind everything that was comfortable and familiar to her. It was too much. She couldn’t sleep by herself, and would wake up screaming several times a night. She would spin and pace around in circles. She would flap her hands, repeat phrases over and over. She was fearful of everybody but myself and her daddy. She needed to be told what has happening all the time, or she became terrified. She required complete control over her environment and possession. She would line up her toys. Instead of playing with other children at the playground, she would get in their personal space, and touch their hair. It was autism, almost overnight, or so it seemed at the time. For 2 year-old pudding, this level of anxiety was the trigger. I think that anxiety in this particular situation is a perfectly normal and understandable reaction, but back then I couldn’t distinguish between autism and anxiety. A year later, I can see that this was anxiety, and for Pudding already predisposed to autism, this was the trigger for her. As life has become more settled, so has she. She hasn’t lined up toys in almost a year. She is far less controlling over her possessions, though she does still like to know where people are going, and what is expected to happen.
I’ll always wonder what would have happened if we hadn’t moved. If she was older, would she have been better able to handle things. Or would there have been something else, sooner or later, that would have caused her anxiety which would have tipped the balance. We’ll never know.
I do know that if I’d known beforehand that Pudding was on the spectrum, I’d have handled our move in an entirely different way. If you’re wondering (as I have many, many times) why we continue in this lifestyle with such overwhelming changes with a child who had such anxiety as a result, I’ll tell you why. I joined a group with other Foreign Service Parents of children with special educational needs. There are a lot of us (was this the trigger for their kids too, or does this lifestyle attract people with certain genetic traits?) in this same situation. I explained how we were struggling financially to do a domestic tour, but terrified of how Pudding would handle an overseas assignment. I got wonderful advice from people in the exact same situation. Who helped me realize that overseas we’d be supported, that we’d be able to create a tailor-made education for Pudding to make the most of her strengths, and assist with her weaknesses. I’d be able to get the therapeutic assistance she needs. That the reasons why we always believed in a nomadic lifestyle for our children are still valid, the diagnosis doesn’t change that.
One mother I spoke to has a teenage daughter with Asperger’s who told me that she thinks moving has enabled her to become more flexible, resilient and social (!), required it in a way that a static upbringing would not have allowed. I have to hope that the same is true for my kids. Cubby will be the same age as Pudding was when we next move- will this prove to be his trigger too?