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Twitter: @Baldscientist UPDATED due to recent events: How much do I hate autism? (read the post before yelling at me)
Update Jan 21: The remains have been positively identified. It is Avonte Oquendo. Rest in peace.
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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.
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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.
(:’-(
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You can subscribe to my blog! Just go to the “Home” page, right hand side.
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Twitter: @Baldscientist
You can subscribe to my blog! Just go to the “Home” page, right hand side.
Facebook page
Twitter: @Baldscientist
I believe you when you say that you hate ‘autism.’ It is difficult for your son, hard to understand, and a ‘difficult cross’ to carry (pardon the reference–please).
My impression of illness (–or mental illness, for that matter) is that it is very much a ‘dual edge sword,’ –not only do most neuro-typicals have a mis-understanding of the illness on a personal level– the impression of illness have become distorted throughout society.
Rarely do we have a ‘news story’ that can resonate for days and days about ‘positive news’ of mental illness–instead; mental illness is stigmatized in negative ways. Perhaps, so much so, that many within American society expect to hear of a ‘bad news story when any aspect of mental illness is spoke of in the news or in private.’
Perhaps, it is the forgotten legacy that many with illness leave to society (the eventual opportunity) to positively change the perception of neuro-typicals.
One’, many of us are personally affected by illness —-change comes slowly, very slowly 🙁
… And you are absolutely right, there can be positive as negative aspects to autism and other conditions. I admitted it in the post. I love my son’s smart wit, his attention to detail and his humor (which is eerily similar to mine… (:-)…) just to tell you some examples. He is also sweet and caring; I could be sitting down reading or something like that and out of the blue he comes and hugs me, just ’cause. The thing is that I am TERRIFIED of the dangers that he can be potentially exposed to, dangers that are less acute in my “normal” kids. From looking both sides to cross a street to trying to clean the insides of a plugged-in and “on” DVD player with a wet rag (this actually happened the other day). If it were not for these kind of things, I would embrace his autism and celebrate it for making him who he is. You should see how I testy I get when someone even looks at him the wrong way when they “notice” his autism. I know that he will be rejected by girls, this is not autism-exclusive, it happens to all of us, but We’ll help him out when the time comes. That said, he IS charming and handsome. My wife and I always say that he is going to end up with the hottest cheerleader in school!
About the “carrying the cross” reference, no apologies needed… Thank you for your kind words, my friend.
No yelling here.
No pithy words.
No words at all.
Thank you for an honest and heartfelt view of raising a child with a disability, and the realistic long-term worries associated with it. I think there is a movement to candy-coat challenging situations and criticize people who try to express their unvarnished feelings about them. Kudos to you for an authentic expression of your love and fears.
PS: Remind me sometime to tell you about my daughter.
Thanks so much for your kind words and understanding… Yes, i’d love to hear about her…
Having worked closely with autistic children and adults, and counting a few as good friends, I understand your post and my heart goes out to you and your family.
Thanks! (:-)
Hi. 🙂
I can see that you love your son. He sounds like a lovely person.
I am sure he will be married and have children someday if that’s what he wants.
I think I have missed something… I still don’t completely understand why you hate autism. Would you mind explaining in more detail?
Also, what kind of cure do you advocate?
Thanks so much. 🙂
Thanks for your understanding… as I said in the post, what I hate is what it does to him. he may walk into traffic without giving it a second thought, he really wants to “fit in” and he struggles with it, he has difficulty following instructions. What’s going to happen if he ever goes through a traffic stop and he does not understand the instructions of the police officer? I am sure that you are aware that there are many examples of tragedies in which people with autism fail to follow an officer’s instructions and are hurt and even killed when the police mistakenly perceives a threat.
I do not advocate for a cure. My son is delightful as he is. He is sweet and gentle most of the time and has quite a mind! I just want him to be safe when I am not around… Thanks for your comment!
As an autistic teenager, I have a lot of the same worries you do. I too am worried about police stops. I have been trying to memorize scripts to say to police officers and looking into cards or bracelets explaining autism that I could use.
I too sometimes walk into traffic. I have been getting better at looking both ways by going on walks alone in parts of the neighborhood where streets are not busy but there are a lot of them to cross. I can have trouble figuring out how fast a car is coming towards me so when I am in busy streets I sometimes wait for a group of people to cross and cross with them.
As for the fitting in… That used to be my biggest wish and I still sometimes want it very much. I have found, however, that I am happier when I devote energy to being kind and to doing things I love and don’t worry too much about whether I look weird. People who are located outside the norm are remembered more often than people who do not stick out. I have found places where I do feel like I fit in – groups of autistic people, both in person and online, and groups of people who love things I love, such as poetry. I love the #actuallyautistic tag on tumblr.com. It is so lonely not to know anyone who thinks like you and I am so glad I have met people like me, who finally understand.
You could try any of the things I have been trying with your son if you think they would help.
Best wishes to you and your son. 🙂
– Abby
You have no idea how much your words mean to me… Thank you and God bless you!
I just linked this this terrific post to my Facebook page (David Royko), commenting “This blog posting by a father with a son with autism is a year old but I just discovered it. It speaks for many of us with progeny whose lives have been destroyed by this nightmarish condition. And I give less of a rat’s a*s than he seems to about certain people’s negative reaction to people and families like us who HATE HATE HATE autism (but I suppose there are people out there who also embrace pancreatic cancer).” My own website: http://www.davidroyko.com/
Thanks for your comment and understanding. This is the paradox, that we simply love our kids while hating an aspect of their lives that can harm them or make them suffer…
My blog’s response to your blog — and thanks for your original post: http://www.davidroyko.com/apps/blog/show/42422337-yes-i-hate-autism
As I commented in your post, exactly. Thank you…
I found your post through my friend David Royko, who always hits the nail on the head — as do you. Thank you for sharing the truth that so many of us feel so deeply. I couldn’t agree with you more. My heart breaks for all my son has lost and will never experience. Your story about love and marriage brought a fresh bout of tears, for my own son and for yours, and the many, many others who share this hideous disorder. I recently started blogging myself (http://www.goodmarching.com) and you give me the courage to tell it like it is and not try to sugarcoat the experience to make those who aren’t experiencing it feel better. Thank you.
Thank you very much for your comment and kind words…
BTW, i will check your blog out… (:-)
This is the right web site for everyone who hopes to understand this topic. You know so much its almost hard to argue with you (not that I really will need to…HaHa). You definitely put a new spin on a topic which has been written about for ages. Great stuff, just great!