Alongside my linguistics degree, I studied astrophysics at university and can hold my own in a medical debate with any doctor. I don’t deal in pseudo-science, and certainly not when it comes to my children.
So, it often comes as a surprise to many that I choose not to vaccinate my children. At first it was just a niggling doubt each time I took my eldest daughter for her (always months over-due) vaccinations. After her second set (8 week vaccinations, which she had at just over 6 months) I stopped them completely. Initially, I wanted to explore my feelings of concern – fully expecting to find that I was just afraid of the unknown, falling victim to pseudo-scientific anti-vaccine propaganda circling around the internet and a typical nervous new mother. And that’s what I found. So I booked her next set of vaccines, and then I failed to show up. I couldn’t shake the doubt. The feeling that something just didn’t add up. The countless hours I had spent reading, fascinated by biology and bio-chemistry in particular just didn’t seem to align with the concept of vaccines. So, I carried on reading. Only this time, I read to learn and not to make myself feel better.
Long story short, I learned a lot more as a new mother in 6 months of intense study than I had done in over 10 years of casual, albeit enthusiastic, hobby reading. I continue to read and learn, 4 years on and I never did book those vaccines. I won’t get into the ins and outs of the vaccine debate here, I’ll save that for another day. But, simply put – I follow the good, solid and unbiased science. I follow the facts, the data and the things we can test, measure and quantify with science.
Sure, I was always interested in the endless reports of vaccine related autistic episodes and regressions. I’ve yet to see any solid Science either way, but I’m open to the possibility. We have a lot to learn and it would be arrogant to assume we know enough, either way, to make a final call on that one. But, I never let it sway my decision making either way since there wasn’t much to really know. Not enough facts to sink my teeth into.
It surprises me when “experts” make claims either way. Particularly the anti-vaccine movement’s assertions that nobody who is fully unvaccinated is autistic – as evidenced by the Amish communities’ 0% autism rates. Apparently. And this is just the tip of the iceberg, really, when it comes to the many things that “cause” autism. As though it is a disease to be avoided at all costs.
My youngest daughter is 21 months old. She hasn’t had a single vaccine in her life, nor did I when I was pregnant with her. She is currently going through the process of being tested for autism, and I am as certain of the outcome as I have been of anything. Since she was 10 months old, I have known that my little friend is indeed autistic.
Over time, I’ve read a lot. As a writer and science fan, that’s what I spend a large portion of my time doing. Reading, researching, learning. One of many strongest abilities, I would say, is being able to gather large volumes of information, very quickly. Being able to skip over irrelevant details and skip straight to the facts. So, over the past year or so I’ve learned a great deal about the many ways in which a mother can inadvertently “inflict” autism upon her child. From whether or not she herself was breastfed as a child to the chemicals on her clothes and furniture and from the area a child lives in to how many hours television she allows her beloved offspring to consume each day, the world is a minefield of potential autism pot-holes ready to swallow up as many as 1 in 80 children at the first opportunity.
A mother overwhelmed with all of this information and the many overly negative articles on the internet describing the high suicide rates of autistic teens could be forgiven for blaming herself for her ignorance and wishing she had done better. She might also find herself desperate to achieve one of the many “cures” we are repeatedly hearing about, often putting her child through fruitless and traumatic interventions along the way.
And so much of this has to do with how we view Autism. As a disease and a disability rather than a simple difference in brain chemistry and cognition.
When we see a “severely” autistic person who is non-verbal and unable to care for themselves, requiring high levels of personal care and therapy, we are not seeing Autism. We are seeing an Autistic individual with severe “co-morbidities”. Autism and co-morbidities are common and one of the reasons for this is that we understand so little about autism that it has become a simple umbrella term for a wide range of symptoms that have a few things in common. Indeed, it is such a large spectrum that it can be difficult to see how people like many of my friends and associates, who are autistic adults and, often, have only realised this in adulthood and who are loving partners, parents, family members and friends who hold down socially oriented jobs very well could be in any way related to an Autistic adult who cannot communicate and is unable to undertake even basic self-care. In truth, they likely aren’t. All that we can know, is that there are similarities in social and sensory cognition. In the absence of any further information we are seeing a grouping together of symptoms, traits and idiosyncrasies on a spectrum so large it encompasses just about everyone.
Autism is not a disease. Co-morbidities are. Absolutely, many who are grouped onto the spectrum suffer co-morbidities that any parent should seek out appropriate treatments for and simple diet and lifestyle changes can make an enormous difference. Sometimes aggressive and alternative treatments can be the most worthwhile and beneficial. I’m not going to dispute the choices a parent makes in order to help their child. In fact, I am endlessly fascinated by the (sometimes dramatic) results many alternative interventions can have. But I remain unconvinced upon a supposed cure. Because it isn’t something that needs to be cured.
Autism, in itself, co-morbidities aside, is who you are. It isn’t something you have.
Parents don’t need to blame themselves for this. No matter how severe the co-morbidities or how mild the autistic “traits”, you cannot cause the relatable feature of autism. When we consider that some of the greatest minds of our time are autistic minds, when we understand that neurotypical social functioning isn’t always optimal in the world, we have to ask ourselves the question – is autism, in itself, even a problem? Some of the most insightful social commentaries I have ever heard have been from Autistic people. Some of the most sensitive and emotionally intelligent people I know are Autistic.
Whilst more research is needed into the obvious pre-disposition of Autistic individuals to co-morbidities, more progressive thinking around Autism is a fairly urgent matter than we can and should begin to engage in.
Far from being the set of symptoms we are so used to seeing as being the face of Autism, it might surprise people to learn that some of their loved ones or even themselves are Autistic and that it isn’t an epidemic. Heck, it might not even be a big deal. It’s not an easy world in which to be an Autistic person, but as a completely neurotypical individual I can say with absolute certainty – It isn’t an easy world in which to be a person at all just now.