Update Jan 21: The remains have been positively identified. It is Avonte Oquendo. Rest in peace.
I heard the news today about the possible recovery of the human remains of Avonte Oquendo, a 14 year old with autism who went missing about three months ago. As of right now these remains have not been positively identified but anyway, it is already a tragedy because someone died.
I will not go into the details of Avonte’s disappearance, who is to blame, etc. There is a lot of details elsewhere if you are interested to know more about the case. That said, these news certainly put into perspective the original story of this post (you will see what I mean if you read it); I cannot even begin to imagine what are his parents going through, but this story reaffirms my feelings about autism.
Based on some of the comments that I got when I posted this for the first time, I need to ask you a couple of favors:
**Please do not interpret that I hate autistics, far from it; read the post beyond the title to know what I mean…
**Please do not insult me (especially if you are high-functioning autistic; I heard Temple Grandin -in person- say “…being autistic does not give anyone permission to be rude”).
** Kindly READ the post before
criticizing attacking me and telling me how horrible a father I am. I you disagree with what I have said, fine, tell me why, but any rude or disrespectful comment will be deleted.
This is a sad and somewhat rambling post, and I apologize for that in advance.
How much do I hate autism? (read the post before yelling at me)
This is the most difficult post that I have written to date. You see, a very strong aspect of my personality is that with me, what you see is what you get. This, of course, is a blessing, but most times it is a curse. The thing is that it is very difficult for me to pretend. If I am happy, it shows, but the same thing happens if I am sad, upset, annoyed or simply pis***… (you get the idea).
Well, here it goes: I HATE autism.
As the title of the post says, keep reading; if after reading the post you still feel like yelling at me, well, there’s always the “comment” option (but see above!).
I do not think that I have to explain what autism is and why am I interested in it. For the former, there is quite a bit of information available and for the latter, you may want to check out my other posts about autism. If you are interested, look at the “tags” section or go here, here or here for examples.
What I want to share is that some time ago, we were watching an episode of “Scrubs”, a very smart comedy mostly about the lives of several young physicians in training. A staple of the show are the daydreams of the main character, Dr. John Dorian (J.D.), Who has quite the active imagination. His imaginings are a big part of the “comedy” part of the show, Yet sometimes, they give very nuanced and intelligent lessons and perspectives on human nature.
In the first series finale (long story) they showed a scene where J.D. was imagining his future. One of the things that he imagined was himself being married to Elliot (his dream girl), having children together, etc. My son, Reynaldo (look at my other autism-related posts for background) turned to me and asked something like, “Papá, is it going to be like that when I have kids?”
I do not know how I was able to do it (you will see why I say this in a moment), but I kept my composure, smiled at him and told him that I thought so, that he will find a girl that he loved and that he will be loved back. He smiled. It is not the first time that he had mentioned this type of things, he has clearly though about it. He’s even told us, completely out of the blue the possible names of his future son and daughter. Just like any other young teenage boy, he thinks about love.
A little while after that conversation, we took them to bed and when my wife and I were alone, I told her about Reynaldo’s question; I could barely talk as I was trying really hard not to cry, and I finally was able to say something like “… But it’s JUST NOT FAIR!”
And I then finally lost it. I started bawling, hard. Now, I feel the need to share with you something; I did not even cry that hard when my dad suddenly passed away in 2009, and I loved him oh so very much!
Anyway, I was crying so hard that my wife had to stop me right there (and with reason) because after all, we had just taken them to bed and, well, if they saw me like that, they would be quite upset. I went out to the yard and I cried my eyes out, raising my voice to the heavens and wishing for my son to have a happy life, that he would love and experience the joy of being loved, wishing that, that, … oh boy …
Never more than in that moment I have ever wished to believe in something more, never before that moment I have desired more that there was a loving God that will help him out and grant him the life of happiness that is not in my power to grant, despite how much I may try.
**And please do not tell me that this is God’s way of making me spiritual; please just don’t.**
I share with every loving parent in the world this desire and hope. Firstly, we all want our children to find that person to love and cherish. We want them to feel joy in their lives. Sadly, there are simply no guarantees, not for them or anyone else for that matter. I do get it. This is life, plain and simple, and I understand that. That said, the second thing that we want for them is a fair chance.
And this is one of the main reasons why I hate autism. More than one person has been robbed of that fair chance because of autism.
It is difficult to articulate my thoughts about this. People can be cruel, no doubt about it and even for us “neurotypicals” the game of love is tricky to say the least. Very few of us have never felt the pain of rejection; this is part of life and growth. How much difficult is it going to be for my son? Would love ever happen for him?
So you see, I absolutely love my boy, unconditionally and forever; however, I ABSOLUTELY, COMPLETELY AND UTTERLY HATE AUTISM. I hate it oh, so very much and for so many reasons, but today I hate it because I love my sweet boy and I see what that monster of disease does to him. Please, pretty please, note that I am not talking about his beautiful mind, his really funny quips, his really insightful comments. My young man is AWESOME and if his autism were just that, I would actually love it.
**And please, please do not tell me that his condition is a blessing in disguise, that his reality has a purpose, please just don’t, at least not today.**
How can anything that has the potential of harming him be a good thing? How can something that has the potential of making next to impossible for him to just go and chat with someone who catches his eye be a good thing?
I once went to a meeting of a “support group” for parents of kids with autism. Once. In that one meeting a woman stood and briefly told her story about raising three (3!) boys with autism. And she was like “… I am so grateful for my boys’ autism because it’s given me the opportunity to grow…” I really tuned her out as soon as I heard that because in my opinion, I have never ever heard a more selfish comment in my life. How dare she!!!! You know, it was not about HER, it was about her boys! How could she not worry about what is going to be of them if she is not there for them? I am fully aware that I am judging and I am not proud of it, but here I am merely expressing my opinion of her comment at the time, nothing more, nothing less.
I also know that there is a series of movements, championed by high-functioning autistics that rather forcefully argue for not trying to cure what they do not consider a disease, and frankly, that is wonderful for those who are able to navigate life with some degree of independence; fair (more than) enough and God bless them for that! Sadly, a significant fraction of people in the spectrum cannot function as well, if at all; plain and simple. Without the help of others, they will be in harm’s way, no doubt about it.
Anyway, I am fully aware that I share this burden with every parent of a special kid, with all ranges of severity, and I weep with all of you today. I do not want to give the impression that I think that I am special case; I know that I am only one of many.
It is just that I am living my dreams… I just want the same for all my children, Reynaldo included.
In another aspect of my life. I am a scientist and a writer. You may want to check my book out…
TFB is available as an ebook (Kindle, Nook, as well as in iTunes). The hardcover is available at Amazon and at the Oxford University Press’ website. There’s even a 20% discount code from OUP. Shoot me a message if you have any questions!
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