For the past couple of days in one of my various autism Facebook support group the following question has been sparking a major debate:
Q: if you could would you cure your kiddo with Asd… ?
If you want to get a bunch of people who don’t know each other outside of Facebo0k to have an argument over a hypothetical “What If” kind of question, I’m telling you, this is the way to do it. Holy cow. I had no idea that this type of question would create so much controversy, or that people could take this so personally; mainly because we are all in the group because we have at least one child with Autism. I strongly suspect that this is exactly why everyone was taking it so so personally.
Without any hesitation, I answered yes. If I could get rid of my childrens’ autism and the challenges they face because of it, I would in a heartbeat. That does not mean however, that I don’t love them just the way they are; because, without a question, I infinitely love all of my children exactly how they are.
However, if I could find a way to make their lives less challenging, why wouldn’t I?
The majority of the parents who responded “NO” said that their child was considered to be high functioning and didn’t have extreme behaviors. The majority of the parents who responded “YES” said that their child had some very negative behaviors such as spreading their own feces on the walls of their house. (I am BEYOND GRATEFUL that my child does not do this, and I sympathize for those who have children that do).
The parents who said “NO” accused the other parents who (like me) said “YES,” of wanting to change their children and who they are; rather than just accepting them as they are.
Well, I think that is kind of a simplistic assumption to make. Of course I accept my children as they are. Of course I want them to reach their full potential. Of course I love my children, autism or not.
I am aware of the limitations that they may face because of their Autism. I also know that as their mother, it is my responsibility to help them reach their fullest potential, and that is exactly what I am doing for them now.
Autism is a diagnosis that my children just happen to have. It’s a legitimate medical diagnosis, with its own ICD-9 code and a listing in the DSM-V. It is not a personality characteristic (like some people assert) that can be lumped with other traits like a sense of humor, friendliness, sensitivity, etc. (I challenge those people to find a medical professional who will give them a diagnosis of “funny.”) So contrary to what other people may believe, I do not think that my childrens’ autism defines who they are as people.
I do, however, think that my children define their autism, as I discussed here.
I’m convinced that without autism my son T would still have a sense of humor and that my son Z would still be good at bowling. I’m convinced that my son H would still love to take pictures. His pictures would still be amazing. Maybe he’d actually be inclined to take pictures of something other than legos, the toilet, and himself. But he’d still be good. Those are some of the things that make my children the wonderful human beings that I know and love.
Without autism, they would still be the children that I have loved since the moment I knew they existed, and before I even knew they had the autism diagnosis.
Autism makes things harder for them. As their mother, I’ve seen it, and I’ve lived it with them. I’ve seen them struggle in their mainstream classes and struggle to interact with their peers. I’ve seen them be vulnerable in situations where others without autism would not be vulnerable. I’ve seen my teenagers have a harder time regulating their emotions, when it is hard enough for a neurotypical teen to manage their emotions. I’ve seen it firsthand, and it makes my heart ache tremendously.
As they get older and transition into adulthood, the struggles will become different. The world, and life in general, are mainstreamed. And statistically, it is likely that there will come a time where I will no longer be around to advocate for my sons and their needs.
This is the reality that parents of special need children face.
So back to this “discussion” in the Facebook group. The people who were arguing about not wanting to “cure” their child’s autism said that autism is not a disease like cancer or asthma or diabetes or any of the multiple diagnoses that can affect a child. They’re right, autism is not a disease. It is a disorder that is lumped into the same category as bipolar disorder, schizophrenia or depression; which are all mental disorders. Just like those terms, autism is a label. It is not a personality characteristic.
There are treatments for all of those disorders. There are medications and therapies that help improve the quality of life for the individuals affected. There are also medications and therapies that help improve the quality of life for individuals affected by autism.
But what if? What if all of those disorders, including autism, could be permanently cured, without a need for therapies and medications, and the quality of life for that individual was drastically improved?
And what is so unique about autism that the people affected by the disorder are not entitled to a cure?
For years I fought to get a diagnosis for each of my three sons. It’s different when they’re in school; all they have to do is demonstrate a need and they will get appropriate services. But sooner or later they graduate from high school and are thrown into the real world. And in the real world, without a definitive diagnosis, it is a lot easier for those individuals to fall through the cracks. This is exactly what I don’t want to happen to my children, and why I fought to get a diagnosis.
I also have to mention that for a while I fought hard NOT to have a diagnosis of autism. My motivation was fear, which many of the parents in the discussion also cited as the reason they didn’t want to cure their childs’ autism. They were afraid that their child might become someone they no longer knew.
I personally know people who have children with an autism diagnosis and, for whatever reason, are in denial about the diagnosis. But if you’re in denial about the diagnosis and are treating the child as if the diagnosis doesn’t exist; in my opinion, this is way worse than accepting that your child has autism while hoping that one day they will not be affected by it.
I am very realistic about the fact that my children have autism. I don’t go around trying to change them or trying to act as though they don’t have autism. I am realistic about the diagnosis and understand that I may have to approach things differently. I am also fully aware of the fact that they will likely be affected by this for the rest of their lives.
Because no one has pinpointed an exact cause of autism, and without that, a cure isn’t possible. My children will likely never see a cure for autism in their lifetime.
The question and ensuing discussion has since been deleted from the Facebook group. The discussion turned into an argument and when people start personally attacking each other the conversation stops being productive.
But I can guarantee you that the post got everyone of the 50,000 or so moms in the group thinking about the “What ifs.”
Just like it did me.