Today’s post might bring about some strong emotions and that’s okay. That’s what we are here for. It is always said that there are two sides to a coin and in this scenario, this can’t be more true. Let’s dive in…
Do you say “He has Autism” or “He is Autistic”?
It may seem like it is saying the same thing but let’s get a bit nerdy about this. High level, of course, because that’s all a sleep deprived mama can handle. The first is basically saying it is a disease that someone has. The other is saying this is just who they are.
Alright, let’s break this down my friends. Let’s say you find out your friend has cancer. You would say “So and So has cancer!” You would never say “So and So is cancerous!” Both are sort of true right? But we typically state the first sentence because it is a disease they have that we must figure out how to cure. It is not meant to be a part of who they are and it has invaded their system. Another example would be “So and So has a broken leg!” versus “So and So is broken!” See the difference? Again, both are true but one implies that there is something tangible that can be fixed.
Now, how many of you have heard someone within the special needs community state the following: “I wouldn’t change anything about my kid.” To begin, I think we can all be honest with each other and understand that there is definitely something everyone wants changed and this statement is a little misleading. They may be saying that something about their child’s special need brings something they would not change (innocence, love, bravery, etc). But I think I can safely say all of us special needs parents wish our child’s life was just a bit easier than it is.
There is definitely a group that believes whole-heartedly that Autism is something that has afflicted their child. It is something to be cured, that can be cured. Autism should be something that is located in your child one day and then taken away the next. Autism is something that is the byproduct of vaccinations. Your child would have led a normal life had it not been for this “disease” they contracted.
The other side believes their child is autistic just like yours is happy or meticulous or fearful. It is part of their personality and that’s the end of it. Just as you adjust to anyone’s personality, you should do the same with Autism. There is no “cure” and no cause. It is simply who they are.
I’m going to welcome my good friend Devil’s Advocate into the room to address both sides of the coin. Seeing something as a disease means you need to do whatever you can to find the cure. There is quite a bit of funding going towards this. Funding that does not directly impact those with the disease during the exploration phase. It is only later generations that will benefit. Funding that may be better spent on resources for adults with Autism who find the world really difficult to navigate. Funding that could go to the families that find themselves going bankrupt with doctor’s visits and therapy appointments.
Jumping to the other side of the coin, I think the only thing to say is “But what if there was a way to change things?” What if there was a way to make your child’s life easier? What if hearing this diagnosis wasn’t so overwhelming and there was a plan? What if you finally understood what caused this in the first place?
I don’t think we will ever solve this riddle. I think at this point in time, we will have two very strong sides of the coin because everything is still so new. I imagine all disorders or diseases started out like this. There was probably always a group that simply stated “this is how it is.” And there was a group that steadfastly hunted for the cure. We didn’t always know about anesthesia. We didn’t always know about antibiotics. We didn’t always know about vaccines. And to be fair, let’s go back to our initial example of cancer. How many years have they been hunting for a cure? Autism has only recently become a hot topic deserving of more “research”. How many more years do we have?
It would also be fair to point out that once we determine what causes Autism and thus can determine it before the child is born, how many will choose not to move forward with the pregnancy? I have been seeing this a lot within the Down Syndrome community. Many with Down Syndrome are shouting their worth and asking that people continue with the pregnancy. Would the same thing happen with Autism?
Which side of the coin do I reside on? That’s a good question, and one that I thought hard about while writing this. When I am talking about Z to people, I usually say “He has Autism” but I think I land somewhere in between. I know this has to do with an issue with his brain’s neurons. I know there are some really smart people putting a lot of time and energy into learning more about the brain. I think Autism is caused by a combination of genetics and environmental factors. I think some kids are born with it, some regress into it and some do see it more pronounced after vaccinations or a seizure or something. But it is all of these combined. And just like Autism is a spectrum I truly believe the cause is also a spectrum. I think we should do all we can to help this community (especially those in adulthood). I would like for Z’s challenges with speech to be “fixed”. But I love his quirkiness, his attention to detail, his different view of the world, his unabashed show of emotions. Those I truly believe are part of his personality and what makes him super awesome and what should not be “cured”.
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Tilted Axis 