Thursday, December 15, 2011

Fixing the Misconception


It is time to answer another question from the old mailbag. This one is BY FAR the most often asked question. I have answered this in various posts and responses, but perhaps it is time I put the answers all in one spot so that I can just reference something for people that are having a hard time connecting the dots or are quick to assume that I am suggesting something that I feel I clearly am not.

Suzi N. asks on my Facebook page:

Hi,
When you used quotation marks for the word "fix" in your video, what did you mean? I am part of a group - and right now that is the main discussion. To me, and please correct me if I am wrong, it is about making Bianca the best she can be by fixing the system.”

Thanks for asking Suzi! It means a lot of things. Perhaps I can best answer you by saying what it does not mean. It does not mean that I view people with autism (or any disability or disorder) as being broken people in need of fixing.



The quotes around the word “fix” are EXTREMELY important. They are vital to the message. It actually drives me a little crazy when I see people put up links to “Fixing Autism” or misquote me and say that the last card says “to fix her”. Taking the quotes away makes the video insulting to a whole lot of people… and rightly so in my opinion. It is unfortunate that a small percentage of the people skip over the quotation marks like they are not there and take me saying that “to ‘fix’ her” I mean that my daughter is some broken human being.

I don’t get mad or rude though. I just try to educate and explain my meaning. The way I look at it, self-advocates have a right to be defensive. I have heard and read HORROR stories from many adults on the spectrum that were treated horribly and bullied through school, and some throughout their adulthood as well. Some had parents that were less than understanding of their condition either by choice or by ignorance. There are parents out there that also have just cause for being sensitive and defending their children where they perceive insensitivity or a lack of understanding. I don’t blame them either.

The video is indeed about the healthcare system and the disparity in funding which I feel needs to be fixed literally (without the quotation marks). There should not have to be articles by the LA Times pointing out that you have to be a “warrior parent” to get the best services for your child on the spectrum. You should be able to get the best services for your child because they are available to you easily from your insurance company. Also I genuinely feel that more needs to be done in researching what it is that is causing what is clearly an epidemic of ASD and what therapies best work for children to help them reach their full potential.

“Fixing” also refers to an innate feeling that men have to want to try and fix things that they perceive to not be right. For many men this feeling can be so overwhelming that they feel helpless, they shut down and withdraw. It is a personal belief of mine that it is that very instinct which keeps fathers less involved than mothers. So I wanted to do a video that was a call to action for men to get more engaged in the lives and treatment plans of their children. When talking about autism, we all know that there is most often a social deficit that accompanies the diagnosis, so in my opinion it is VITAL that dads are actively engaged in the autistic child’s life. The more people that can help to pull the child out of the isolation of autism the better. A father’s involvement will do nothing but lead to easier and more fulfilling social relationships as the child grows older.


The other more specific thing that I was drawing reference from was as you pointed out Suzi, the cards that end the black and white portion of the video… “I can guarantee that she will be… the best BIANCA she can be.” I thought that the inference was pretty obvious, but again when defenses are up, subtext is not always clearly understood. Yes I could have made the video literal so everybody could take it as is... but where is the art in that? I wanted people affected by ASD and not, to be able to connect the dots. The danger in that is that it leaves the message open to interpretation.



I also wanted to create something artistic. I knew I wanted to use “Fix You” by Coldplay because I heard it one night on my way home from work and it made me think of Bianca. I know the song is about a failed romance, but when the part of the song played that says, “Tears stream down your face, when you lose something you cannot replace” I broke down sobbing thinking of how cruel regressive autism is to parents and how I wish I could break out the big picture book and have Bianca label every animal under the sun as soon as I could point to it… but she can’t any longer. Perhaps she just chooses not to.

I told my wife about my experience with the song the next day and played it for her asking for her to think of it in context of our daughter, and she started to well up almost immediately. I knew I wanted to do something with that song. I started analyzing why it got to me and I slowly started to make the connection with a man’s desire to fix things, and that maybe that was why I had compulsively visited the Autism Speaks webpage and stared at those statistics over and over. I felt like I needed to get those numbers out in a way that was more appealing than just looking at statistics on a page. I wanted people that were not affected by autism to be able to be entertained by something as they were learning about the discrimination people with autism have to face with insurance companies and how there is this huge disparity in funding between autism and other less prevalent conditions.

I knew that using the term "Fix" would be tricky because it can be such a hot-button word. I also thought that since it was a term that conjured up passion that it may help to open a much needed dialogue between parents advocating for their kids and adults on the spectrum that take exception to the notion that they need to be cured or that there is anything wrong with them in the first place. Their argument is that autism helps to define who they are as people. Who are we as parents to say otherwise? My position has always been that I hope that some day my daughter will be able to join the ranks of the self-advocates and help to educate the masses on her experience and how she views the world. I dream that someday Bianca can be a correspondent alongside Alex Plank, Jack Robison and Kirsten Lindsmith on Autism Talk TV and follow me into the business.

Let me also say that a common criticism of the video is that people believe that I am comparing autism to other diseases or conditions that are terminal. I am not. This isn’t a “which condition is worse” contest. I am only referring to the funding of those conditions in ratio to those affected in the hopes that the severity of the situation at hand can be fully realized by those that have YET to be affected.

Thank you for understanding the message of the video Suzi. It really makes my day when I see people “get it”. Sometimes when I read negative comments, I see that people have replied to those comments with their interpretation of the video and it is almost always spot on. It is an incredibly warming feeling to see when somebody understands the true message. I was recently at an awards reception where they played my video. Afterwards I was talking to a painter who asked me how I felt seeing people moved by something I created. I was at a loss for words because I honestly had never thought about it that way. That is probably why I responded with, “Overwhelming”.

Thanks again to everybody that has watched my videos, read my blog, and have followed me through social media; your support has been so healing. It is good to know you aren’t alone.



If you have not already, please take time to watch my videos, "Fixing" Autism and Autism Awareness with Nichole337 and share them with your friends.




To keep up to date with everying in Lou's Land, please subscribe to my blog. "Like" Lou's Land on Facebook and follow Lou's Land on Twitter

11 comments:

  1. U r a wonderful father please keep up the great work u do to make more people try to understand

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  2. <3 I love the video and tear up every time I've watched, and my husband does as well! Keep up the fight! We are certainly fighting to give our son the best outcome possible. And all the work your doing will pay off and hopefully help the future families that are faced with autism, I hope that we will no longer have to put up a fight and be "warrior" parents to get our children the services they need and deserve!

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  3. This part: “Fixing” also refers to an innate feeling that men have to want to try and fix things that they perceive to not be right."

    Was the first thing I thought of when I watched the video ala Men are from Mars, Women from Venus.

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  4. Don't we all want to "fix" things in our own lives that frustrate us? Why would a child who wants to be loved be any different? As parents of children on the autism spectrum, it is our responsibility to help our children fix the frustrations in their own lives. I believe most parents want their children to be able to succeed in life, parents of children on the autism spectrum want no less for their children. Many parents of typical children guide their children (fix them) to be able to "fit in" to society to be successful in life. I watch my daughter struggle everyday, and I don't think there is anything wrong with wanting to try to fix her frustrations and help her cope with being unique. As the video explains, it is a daily struggle fighting providers, insurances, the public opinion, schools, and sometimes even family and friends just so my daughter can receive the help she needs to be the best person she can be - a goal that everyone has in their own lives and in the lives of their children. "Fixing" is not about changing who the person is, it is about helping them!!! Thanks Lou for your video. I currently pay out of pocket for services for my daughter due to insurance denying services for Aspergers. I also had to move to get my daughter into a school that would accept her and help her. She is finally starting to be able to be successful at school and the smile on her face explains why as a parent I will continue to "fix" whatever I can for her!!!

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  5. Lou, I have heard the word "fix" is a knife in my heart when I hear it for so many reasons. Rhys is not broken, I may be broken, but he is not.

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  6. Lou, thank you. As a father of a 7 year old autistic son, thank you. I greatly appreciate your artistic ability that simply puts it all together--for those who have experienced someone with autism and those who have not. You've also inspired me to begin sharing our story more often and with more people. I've learned quickly we "need a village" to help us raise our son--we really cannot do it alone. So THANK YOU for "getting it."

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  7. You are a wonderful father, and I envy you! My daughter, Ady very much reminds me of Miss Bianca! Kudos to you! I totally understand you! I hope Alabama can get to the point where you guys are with insurance.

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  8. That video was so moving. My 28 month old son was diagnosed with Autism this past January (thank god for Early Intervention!!!) and I can completely understand what you meant by "fix". When you finally hear the weird Autism, the first thing you ask yourself as a parent, after the initial shock, is where do I start? There are so many things to "fix"! You take it upon yourself to "fix" the way the public views your child, "fix" the system from which your child receives treatment, "fix" your child's lack of self expression so that he/she can have a voice in all of this. It does not mean that our children are broken, they just need a society that is understanding and supportive. I love my son more than anything on this earth and I'm extremely proud to advocate and educate on his his behalf <3

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  9. Friend of mine on facebook passed me the link to your vid. I had to watch it twice.
    When I was a kid, there was no name for my backwards sliding, no convenient label for having, at times, genius level in some subjects; at other times, the inability to comprehend idiom.

    When my youngest was born, he was mostly quiet, always alert, generally recognized the world around him, but by fifteen months, the gap in levels was noticed.

    Moderate autism, high-functioning. When he was four, the education expert stated there may be a chance my son might not speak at all.

    My son produced a chunky crayon, scrawled on a paper, "Boy sMaRT", obviously mentally sounded out or otherwise cut-and-paste of symbols [letters] in his environment that fit what he desperately wanted to express.

    He threw the crayon on the floor, threw the paper at the education specialist, scrambled under a desk.

    Rages happen, episodes occur. Sometimes the chasm between his brother and him would be huge.

    He's college-aged now, graduated school with honors, but it took a full support team backing him to navigate it.

    He's brilliant, make no mistake, though it's through the unique filter of the spectrum.

    He's not broken, as neither is your daughter.

    He was voted, among his classmates at high school, "Most popular", though he still shows signs of being socially inept, and, much like my own world of people around me, he has a hard time navigating the world around him without a full support team around him.

    I saw your video, and I felt every bit of it, having seen it in my son's eyes.

    Thank you, and keep fighting The Good Fight.

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  10. FIXING for Autism does not mean to fix he/she but supporting them to be the BEST that he/she will be...for me as a mom, do the best in whatever I can, so my son will be raised as his siblings and can be an independent person in future..who knows what will happen tomorrow so do the best for today as much as I can..my aim is simple, teach your child to be happy, not how to be rich so they know the value life is not about the "price" only...

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