When you become pregnant you start to thinking about a lot of things that you never did before. You become very aware of everything you eat, how you sleep, how you stand, and just about everything you do on a daily basis. This is because you are starting to have to learn about how all these things will not only affect you in the long run but also how they will affect the child you are growing inside of you and how your actions might affect who they are and their future. Above all you want your child to be as healthy as they can be and do the best for them and give them the best chances at life. This does not only mean physically but mentally as well. There is one particular question that I have been asked a few times. Perhaps it is because of my status as a autism sibling or because of the field of which I work (or maybe it is a question that is more common than I think). I have been asked on more than one occasion if whether or not I have ever thought about/feared having a kid like my brothers. If having grown up with brothers with such complicated concerns has made me question whether or not I wanted to have children because of the possibility that autism or other similar disorders might be genetic.
This has potential to be an offensive question but I can say with true honesty that it has never been a question that has offended me. This is because I can’t say it hasn’t ever crossed my mind. If you have read my previous post about the hard parts about being an autism sibling you know that it wasn’t always easy for us and I only know it from the sibling perspective. I didn’t have to be the parent who had to make the decisions regarding therapies, medications, workers and all that came with those. I didn’t have to worry about all the paperwork and applying for government funding. I didn’t have to go to school meetings to discuss my son’s “behaviour” and have to try and understand their IEPs. I watched my parents go through all of this as a third party observer and I never envied them. It is hard, it is constant and it is frustrating and exhausting. Yes being an autism sibling or parent brings with it a great deal of joy but man it looks hard. So yes, despite how much of a horrible person it makes me feel to say it, the possibility of having a genetic predisposition towards having a child with autism factored into my decision to have or not have children. This makes me feel unbelievably guilty. I do not see my brothers as any less than any other child. I do not think that I will love my one child even a miniscule less if they do end up having any sort of diagnosis. But, as much as it pains me, it is true, so let’s discuss.
At the end of the day I don’t think it is a thought that only I have or that I have been the only person asked this or asked a similar question. I think perhaps for me the possibility or the the thought is just more prominent because autism and having autism in my family is such a large part of who I am. I think people might feel more comfortable asking me this question because I am so vocal about my family and the good and the bad about it all.
There are ways that you could get some information about the possibility of your child having a developmental diagnosis before they are born. There are optional tests that you can have done while pregnant that can tell you if you have any genetic markers for diagnoses such as for Down Syndrome and a few more. This is another choice that you need to consider when you are pregnant; whether you want to know if there is a small chance or if you just would rather not know. I personally opted to have none of these tests done and it was a very easy decision for me to make This is partly because I have been asked the question so many times that I have had a lot of time to think about it. At the end of the day if I was told that my little peach had markers for this or that it wouldn’t make any difference. That is not the best way I can describe what I mean but it is hard to explain. I think maybe it is because I have already had to consider whether the fact that autism may or may not be genetic and what that would mean for me and my children that I have already come to peace with it being a possibility. Does this mean it is no longer a fear that I have or something that I don’t bother thinking about? Hell no. I still think about it all the time. For instance, when I was sick and had a fever for almost a week one thought that kept popping into my head was “They told mom that one of the reasons A might have all that scar tissue on his brain is because she got a virus while she was pregnant. What if that is happening to me right now?”. When I am at work and I am working with a child who is developmentally delayed, for example, I find myself wondering if my kid could be like that too and what that would mean for me.
I don’t claim that I am the only person who thinks this way of course, or why would the option for genetic testing exist? When my midwife asked if I was interested in the tests I said “No” quickly and she was surprised. I explained it as thusly; “I have already considered whether or not knowing I have the genetic possibilities of having a kid with any sort of disorder would affect my desire to have a child or to continue carrying the child that I have and the answer is a no, a scared no, but in the end a no. The only reason I would want to know is if I would know for sure or not and in that case I would take it as an opportunity to prepare by doing research or whatever. But honestly I don’t know personally what else I could do to prepare than to just live the life I have lived already. Besides the tests can’t give you a certain yes or no answer, they can’t even give you a strong maybe. So I already have the worries that every little thing I do might do this or that to my poor little baby in there. No need for the extra stresses of obsessing over a 1 or 2 % chance.” Was it this nicely said at the time? Probably not but this was the gist and the speech I had prepared in my head. So there is the answer to the question.
So in the end, this is a question I have been asked and these are the thoughts on it that I wanted to share. Usually when I was asked before I would answer with some version of “I am not sure honestly” because I wasn’t. There are still times that the idea of it all scares the living crap out of me but I am starting to think that that might be ok, and that maybe I am not alone and that my experiences don’t make me the only person who thinks this way when they look down at their ever growing belly. There was a time when I had decided that because of this possibility among many many other reasons that I did not want to have kids. I didn’t know if I could handle it and the possibility of it all was just too daunting. I see now that it is not because I was a bad person or because I loved my brothers any less (a worry that you knew I had at the time) but simply because I wasn’t ready. Some days I think I am still not ready but not much I can do about that now!
Thank you for reading!
Danielle