The "C" Word: Common Cause in Spite of Conflicting Perspectives

In The "C" Word: Common Cause in Spite of Conflicting Perspectives, we explore different views of the word "cure."

I wrote this article after hearing parents of children with autism say unintentionally unkind things to adults on the spectrum, and hearing adults with ASD say unintentionally unkind things to parents of children with ASD -- all because of opposite definitions of the c-word. This transformed people who should be natural allies into opponents.

Have you encountered both of these views? How have one, the other, or both shaped your thinking? Did this article help you better understand the view opposite your own? How can we overcome differences over the c-word to work together?

Share your thoughts and experiences.

You can find the article here: http://www.iancommunity.org/cs/articles/the_c_word

When I think of the C-word, I do not envision my children going to Harvord and earning their masters. I think of the C-word as "them" being comfortable withen society.

I often think of that cartoon "Rug rats, all growen up" the one boy who does not seem to conform to society, he always wears a funny hat, and miss matched clothes. In one eposiode, his parents were called to the school and he was going to be expelled if he did not start dressing like the other students. The "mom" in the cartoon then said that if the school meant to take her son's identy away from him then he did not need to go to that school.

Thats how I feel. My son's are diffrent, but I embrace those diffrences. To find a "Cure" and change them into diffrent people does not sit well with me.

Don't get me wrong I do struggle with the stimming and inappropriate behaviors, perhaps to a greater or even less extent then others, and though I would like to teach my children that perhaps if it's possiable to stop the hand flapping, do not want to teach them that they are in some way defective.

In the words of someone very insightful
" Would you give a person in a wheelchair a reprimand because they could not walk?, then why do you give my child a reprimand when he can not make eye contact?"

Thank you, Connie. The article is very beautifully written from both perspectives.

Thank you, TwoSpecialBoys, for understanding how truly beautiful are your boys.

As an autistic adult, I have apologized to my Mom for the difficult behavior I exhibited as a child. My Mom's response was to assure me I was not a difficult child. In truth, I was a difficult child. My Mom was not a difficult Mom. She did try to change some of the behaviors that would have caused me to damage myself with varying degrees of success. In the end, I am autistic and there is really nothing that will change that, nor would I wish to be anything other than what I am.

It seems from my observations of me and other autistic people, the more positive and supportive parents are to their autistic children, the more successful we are in life. I understand there are many forms of autism within the spectrum. Some forms of autism are more severe, some less severe. I have tested in the middle of the spectrum.

I am INTJ personality. I think globally and in images. I have been advised less than one percent of the population has the ability to be what I am. I have spent many hours going over and over and over it. What am I?

In the end, I am a human being just like everyone else, only not like everyone else. I am honest even when it gets me into trouble. People have said I have no fear, but I know I must have fear. Human beings could not survive without fear. My perspective is different. My concept of time passing is different. I am directionally challenged. I have a great capacity for deeper thought. I have earned all 4.0s in college (except one B in P.E.). Actually my GPA is much, much higher than a 4.0. They make me take 4.0s. I do not understand why one human being is more important than another human being. This can cause problems on occasion.

There are times when I stim. There are times when I cannot make eye contact. There are times when I have to consider deeply other people to understand. I avoid contact with unfamiliar people and unfamiliar situations.

There are times when I do not stim. There are times when I can make eye contact. There are times when I understand perfectly.

It is beyond my understanding why I need to be "cured." It is not my intent to offend anyone, but it kind of seems like there are people in the world who are very defined and linear. I am not one of these people. I am way, way outside the scope of some people's perspective. Why does this mean I need to be "cured"?

I am autistic. I have accomplished many great things in my life BECAUSE I am autistic. I will accomplish many more great things as an autistic person. Why is it I have to be dissected in an attempt to be a part of the collective?

If I want my alarm clock to be five hours fast because I like to do the math, what is wrong with that? If I read a book that repeats the same theme throughout its pages and I consider it to be the equivalent of Chinese water torture, why does this have to be an issue? Why does it have to be an issue that I ENJOY reading textbooks?

I like who I am. I like what I am. I do not wish to change. I would not want to loose myself so the defined linear people in the world can be happy.

What needs to change is the way non-autistic people view autistic people.

I myself don't really think in terms of "cure" anymore. I think in terms of "helping my son be his best self." If there are things in his way, like when he had horrific meltdowns that kept him out of school and isolated and depressed, I want those dealt with. Hurray for any treatment that helps him with that! The same for behaviors that might keep him from a job he'd want someday, or from having friends, or even just being OK out by himself in public. (Like picking his nose or scratching his privates in public, or not bathing, or whatever.) YES, for help teaching him to change these kinds of behaviors.

His core self, the part that is so sweet and honest and smart and just plain good? That part is awesome, and needs nurturing. That's the part I want the treatments to let OUT, so it is not masked by all this negative stuff.

Thank you, TwoSpecialBoys, Cyndi, and SaraB, for starting out this discussion with such insightful comments. I look forward to hearing from more of our readers on this topic, especially as regards how parents of children with ASD and adults with ASD can find common ground to advocate for a better situation for all people on the spectrum: in schools, in the work place, in daily life.

My wife and myself prefer to use the word recovery. Both of my boys regress into autism and we are in the process of recovering them. I can understand some people donnot consider autism as recoverable disorder but in the case of my two boys they are well on their way. The progress has by some experts and family and freinds been miraculous but we believe it,s because we are pulling enourmus amounts of mercury alumin and all sorts of other nerotoxics out of their bodies. I believe a cure is something GOD does but recovery is what loving,devoted parents do.

I don't understand the anger when we hope for a cure for our kids. If our son functioned well enough to object to us trying to find a cure, there would be no problem and no cure necessary!

Hi dave and billkaren, and thank you for your comments. I so understand your feelings as parents who want the absolute best outcome for their children.

Again, the purpose of this exploration of the word "cure" is to acknowledge both how some parents of children with autism feel, and how some adults with autism feel. The goal is to help overcome divides within the autism community so that everyone committed to improving the lives and future of those on the spectrum can work together, no matter how they define or feel about that particular word. For example, better treatments, better services, and better understanding of individuals with autism are all things that will benefit the entire community.

To put this into context, we are now launching a pilot survey on "Adults with Autism Spectrum Disorders," which means more adults with ASD will be joining us in IAN Community. We wanted to address some of the issues that might come up proactively.

The adult surveys are in pilot test mode, and will be improved based on user feedback prior to a nationally advertised launch in mid 2009. There is very little data on the situation of adults with ASD in the United States, which is something we hope to change.

Meanwhile, we will continue to work with our valued families of children on the spectrum to collect information crucial to researchers and families alike. For example, we plan to launch an extensive Pregnancy and Birth questionnaire in 2009 which will cover everything from in vitro treatments to medications taken during pregnancy to whether labor was induced. This will help researchers explore the many questions they have about any association between specific circumstances during pregnancy or birth and autism.

Thanks Connie and Cyndi,

I look at the wonderful accomplishments my children make each and every day. They way their eyes light up when they see something for the 100th time like it was the very first time. Their inability to lie, even when it hurts, their total lack of fear when on the biggest roller coaster in the park.

Each day I wake up I eagerly anticipate what this day will bring, what miracle I will be witness to.

A "cure" if it meant they would no longer be them, then I don't want a "cure" for them, I want a "cure" for society, so they can be accepted for the beautiful, creative, smart, sometimes quirky, always funny, screaming, toewalking, spinning, wonderful people they are.

To me the C word is an insult that implies that I am broken or that I am not as good as someone else just because my brain is a tiny bit different but I am not broken I am fine and I love me and I wouldn't give up being autistic for anything. So I am different so what we are all different, our differences are what make us special and you know what I am happy being me and I don't want a cure my autism I want a cure for society. People demand of you to show them understanding, compassion, tolerance and empathy yet they don't try to do these things, to me it seems many want to cure us so they don't even have to make an effort to try. Further more the c word scares me to death, I am terrified if genes were every located that could be tested while a baby was still in the womb that most autistic babies would meet the same fate as most down-syndrome babies.

Hi Blackstarzero. I do understand your perspective on the "c" word. What's important, though, is to make sure that everyone around the autism community understands both perspectives. If the first thing parents of children with autism and adults with autism do isattack each other over that word, they instantly lose the chance to work together towards better services, better treatments, more acceptance and accomodation in schools, universities, and the workplace, etc. It is crucial to keep common interests in mind.

(By the way, when I speak of "treatments", this includes treatments for co-existing conditions. Many individuals on the spectrum may also suffer from ADHD, anxiety, or depression, for example. These can be a big problem if you are trying to function, especially at work. Health care access, including access for issues like these which a psychiatrist or other mental health professional might handle, can become a prerequisite to success at work.)

In brief: there are many common goals the entire autism community shares. Disagreements over the c-word need not impede unity when it comes to advocating for better services and treatments for individuals on the spectrum, or for greater acceptance in society.

I'm not so sure we will ever find a true "cure" for Autism. With so many variables involved, it's probably best to find what the common contributing factors are and change that first to deter future cases. What I see in so many is a desire to find a quick and easy solution, a pill or magic potion that can be ingested, that will "fix" the problem. We can do much to help, or facilitate, the human in it's wonderful adaption ability to become more neuro-typical, but ultimately the human body is the only one that can "cure" itself. About the only thing you can really cure is a ham.

Hi, ASDaddy, and welcome to IAN.

Thank you for your New Year's Day post, and your insightful comments.

Ahhhh in a perfect world the c word would be exactly what you want it to mean. but in this world...

my son has quirks that society deems strange and unapropriate, hand flapping,stimming, spinning, yelling, and other things that would cause "normal people" to stare. I don't want my son normal. I like some of his quirks. I don't like his biting or his screaming, I don't like how angry & fustrated he gets when he can't communicate what he wants.

I don't want a cure I want him to talk to me, I want him to spin cause he's a happy 3 year old & cause it feels good, we all do things that make us feel good why should it be any different cause he spins or flaps his hands. I understand both points, I really do.

We don't want to change who our children are. We want them to live life to the fullest. & when most parents say cure, it has more to do with them talking or not biting or the meltdowns from frustration. Never to cure who are children are.

The word cure is such an issue with me.

Would my life be easier if my 5 year old could communicate with me via speech? Absolutely. Would his? Probably. But we are working on that. In the mean time, I love everything about him, every moment of the day that I get to see his face.

I also have 2 autistic siblings. One is still a child and undergoing the standard speech/ot/pt regimen. The other has grown into an incredibly intelligent and mature young woman. Yes, she's weird. So what? So are most people, in some way. When I think of a "cure" I have to wonder if it would also "cure" her of all the things that make her the awesome person she is.

I'm insulted by parents who are only interested in "curing" ("recovering") their children. What does it say about my child, my brother, and my sister, and about their place in the world that people would rather subject their children to dangerous "treatments" than have them be like my family?