Monday, 30 April 2012
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Are You Kidding Me?! Why Autism Positivity?
There’s been a lot of fussing and name calling in the ASD blogosphere of late. It is centered not upon vaccines or biomedical treatment but on the call by some – including Thinking About Perspectives, a blogger group I am a member of – to bring a positive light to autism. A lot of folks are embracing this view, but there are many who are frustrated, sad, and angry who are feeling alienated because their feelings don’t quite match up with all this positivity. And that makes me sad. Because I hate the thought that people are out there, once again feeling like others are negating their own emotions.
Speaking for myself, I don’t think autism positivity is about denying the very real challenges being autistic or raising a child with autism presents. If it were, then I’m afraid I would have to side with those who are against it. The cold hard truth about autism is that each person affected by it is dealt a different set of cards. And some of those cards are poor hands indeed. What I mean by that is that life is certainly going to be easier for those who can communicate with others. It is obviously going to be more pleasant for those whose sensory issues do not overtake them in a vicious assault every time they leave the house. Of course it is preferable to be toilet trained than not, to be able to read than not, and to have the ability to make your own choices. Yes, I want those things for my child. I’d be crazy not to. Yes, I am terrified he might not. Because not having the freedom to direct your own life is a loss – and one I would have every right to grieve. Without some sanctimonious autism cheerleader telling me how very happy I should be about it.
Which brings me back to my point. Autism positivity is not a vast conspiracy to make everybody autistic. It is not an attempt to discourage therapies that might improve the quality of lives affected by autism. And it is not a movement to create guilt in parents who are struggling with very real issues related to the most severe cases of autism.
Yes, some of the hands dealt by autism have been tough. But not all of them. We call it a spectrum for a reason. There are a very large number of people on that spectrum whose lives are fulfilling and happy. People who have learned to navigate the neurotypical world. Children, students, parents, spouses, coworkers, teachers, family, and community members. People whose very unique perspectives and talents have contributed to our world. And even some extraordinary minds who have helped to make it a better and more beautiful place – scientists, artists, engineers, and other great thinkers.
And here’s the thing. Those folks have to walk around hearing about epidemics, cures, gene therapy, social dysfunction, and disappointed parents. They have to endure public discussions on their sexuality (or lack thereof) and answer personal questions on whether or not they understand the concept of love. They know that perception of autism runs from people equating it with mental retardation to thinking it a “soft” condition that doesn’t even exist. And the only people representing them on TV are geniuses or superheroes. Given those roles from which to choose and identify with, can you blame them for wanting to present their own view of autism? To want to shout from the rooftop that they are proud of who they are? That they like themselves just fine? That it is okay to find humor in their differences and to enjoy some of the perks of being autistic? For there are perks. And they have a right to like those perks. They have a right to like themselves. They have a right to not feel like a walking tragedy. And they have a right to demand the world not treat them like one.
I joined the Autism Positivity 2012 Flash Blog Event because I want to send a message to the young people who are still fighting in the trenches of acceptance. Those kids who get up every day and battle loud, smelly, crowded hallways just to get to classrooms filled with students and teachers who don’t understand their differences and don’t appreciate their contributions. I have seen those tears throughout my years of teaching. I have hid them in back rooms of the library to cool off tear-stained faces with cold cloths. Kids whose peers, teachers, and even family don’t begin to understand how very brave and tough they have to be to function in what is a daily battlefield for them. All while being told that there is something terribly wrong with them.
Yet I don’t even know if my child will be “high functioning” enough to even have this to look forward to. I hope. And, yes, I pray. But his cards are still face down on the table.
No, I am not in denial. I have seen severe autism. It is still way too early to know what choices my son will have available to him. But even if the dreams I have for him are not realized, I refuse to not take joy in what I have in him. I refuse to not be amazed by the wonders of his mind. I refuse to allow my own grief –which I confess to experiencing every day – to cast a shadow on his love for life and his pride in himself. Every human being on the planet deserves to be celebrated and cherished – not matter what challenges they face.
For I know that the roots of his self-worth are reflected in my eyes. Mine. And, no matter what, I want him to like what he sees.
If you would like to participate in the #AutismPostivity2012 Flash Blog Event, please visit our page. You don’t even have to be a blogger!
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- From: flappinessis
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Comments (12)
Tell me this is on your regular blog too. This is WONDERFUL. And I could not have said it better.
Thank you for your blog. I think you are right on. How ever I feel compelled to speak for the parents that don;t feel like there is much to be positive about. When I started our autism journey 8 years ago I was positive and determine to see the good things about my son and his autism. My son was/is nonverbal but I considered him moderately autistic (now have to describe his as severely autistic) and although I knew things would be difficult for him and for us I was positive about his future. For the most part I found the professionals we worked with helpful and compassionate. If all we had to deal with was his autism I still could hold that outlook. Enter the public school system, enter the escalating aggression and self injury during their watch, enter their attitude that this was just autism and to be expected and their refusal to accept accountability for it, enter the special education legal system parents can not win in, and enter the never ending fight to get services both in the public school system and the state, that requires parents to overemphasize the negatives and forget the positives in order to get their child's and family needs met. For me It has been virtually impossible to maintain a positive outlook in the system. I am not a complainer by nature, I have parents that tell me I am too soft on those that deny what my son needs. This fight to give our kids some kind of future beyond an institution is exhausting, disheartening and enbittering. I am thankful that everyone that is living with autism does not have to deal with it and all I ask is that those that can see the cup as half full be understanding of those that have been conditioned by life to see it as not even close to being half empty and not expect us to be excited to join your parade. I truly hope there are things we can celebrate together but we might need the willingness to commiserate together as well. ,
Thank you. I really like your posts. However, I have to say, I still don't really get it. Autism is not a positive thing and I don't see why that is offensive. I don't see anyone with autism as a walking tragedy. They are valuable people. The same goes for any person with any disorder or illness. People with MS, diabetes, obesity, MD, bi-polar disorder etc. are beautiful people that contribute to society in a great variety of ways, just like people with autism. Yet we don't need to see their health conditions as positive in order to see the person as worthy, respected and appreciated. It is generally agreed upon that with most diseases/conditions/disorders/heath issues/however-you-want-to-categorize-them are not positive. Why is it so different for autism? I just don't get it.
@Jonsmom01 - I hear you. I have two children on the spectrum. One is high functioning, one is low, and every day it's getting harder. It's almost impossible for me to see anything positive any more in my daily world of severe sleep deprivation, aggression and borderline violent behavior. Everything is a struggle with my daughter and some days I don't feel I have the strength to even deal with her. I love her with everything I have, but I hate what autism is doing to her. We are so isolated. We don't go anywhere, we don't do anything, my husband and I haven't had a vacation in six years. We can't even go out to lunch as a family. My husband and I are both on antidperessants and meds for anxiety.
Anyone who could be joyful living like this is welcome to teach me how. There is very little that brings me joy any more and it would be great to remember how that felt.
This is the most intelligent presentation I have read on autism discussion here, and I thank you. I've said it in the past, I'll keep saying it, parents like you are awesome. My mom didn't stand a chance. She was scarred for life by negativity from doctors, family, friends. I'm the one who survived it all. I'm 50 now. My GAF is 51-60 on a HEALTHY day. Yes, they argue over whether I have asperger's or higher functioning autism ~now~. Back in the day I fell through every single crack. Life sucked as a child for me, and I mean truly sucked. But I grew up, got a college degree, raised my own kids, held a few jobs, still married. Looking back, I can't see that my life has any less value than anyone else's because I didn't have more opportunities with correct brain function. I think most of these arguments are ridiculous. I keep wanting to put perspective back into the discussion. I watched my sister raise a daughter with cystic fibrosis and lose her at 20. THAT was hard. I do feel for my mom. We never reconciled and I never felt loved. She died. If I could go back in time and show her who I am now, would she be satisfied? Would she be proud of me? I don't know. But I'm not going to let that kind of negativity eat me up.
@ZombieMom_Speaks@xanga - If I could hug you through the computer I would. I babysat a legally blind girl with severe autism, cerebral palsy, and seizures for a woman for a couple of years. I was the only one beside her mom who could get her to eat and bathe her and rock her. She was combative and had a very bad sleep disorder, and I remember her mom being exhausted from staying up all night holding her little girl's hands because she had such a compulsion to jam her hands into her mouth and choke, I guess the sensation was like a stim, and once she started she'd do it for hours. I'm saying this because I know it's hard. That woman was able to get her little girl into a state program that helped her transition into a group home, and her mom has been visiting her ever since. She was able to get a degree and now works with handicap kids in a public school, and is doing very well. I think it helps to know you don't have to be *stuck* with your kid. I raised a full time step daughter with fetal alcohol effect (thankfully not retarded but super ADHD and other problems like audio processing), and I think it helped that I have an edge, I'm already in a different brain wave and could kinda plug in to her not being able to be like the other kids in elementary school. I took a job as a computer aid when she was in first grade so I would be in the building, some parents find ways to volunteer. I let go of a master's degree (was acing and halfway through it) to raise this girl, and yes I felt so bitter a few times that I lost my life to her, continually. But fast forward. She's 24, never fell to drugs and alcohol, never got pregnant in school, went to college, owns her own business now, married, and is doing so well for her age. I would never have believed it when she was 5. It's really hard to have your whole life revolve around a child who is difficult to interact with and understand, but all you have to do is be there. I remember (aspie brain) everything my mom said and did, even when I didn't respond or look at her. I remember noticing in my 20's that she looked so sad, even though no one else noticed it because she was so good at hiding it. I remember trying to talk to her in my 30's, but by then it was too late, it had been to long, she didn't understand that I was needing HER to hug ME, finally! I never reconnected emotionally with her because she had built up such a wall to protect herself. And when I was 40 she started having strokes, and there weren't any more chances. I'm 50 now. I see a psychologist, and we talk a lot about my mom and other people who have helped me. I couldn't talk about my feelings to anyone until I was nearly 40. I think I'm saying it's ok to let go of working so hard all the time to connect and take care of needs you can't meet for some reason in your kid's head, because it's very possible it could all turn back around and she will be there for you some day when you need help. If I could be your daughter in the future telling you thank you for trying so hard and being there, give you a hug for all that pain and sadness, I would. I can't hug my mom. Please don't despair.
@tiyanasmom - "Why is it so different for autism? I just don't get it."
Because negativity was all I and my parents got growing up, and that is so terribly depressing any way you look at it. Because positivity means that even if my brain is crooked and I annoy everyone, we can believe that the way it works will be very good in so many other ways some day. Because if I hadn't believed with all my little heart as a child that I was worth something, I would have killed myself a long time ago. Positivity has long reaching consequences. I'm one of the lucky ones who made it through the negativity. I can't tell you how refreshing positivity is.
"I don't see anyone with autism as a walking tragedy. They are valuable people."
And I say thank you, I appreciate that. But believe it or not, the same discussions go on with kids born with deformities and terminal illnesses. Not everyone believes they are valuable and have the right to live. I have a social deformity. No one saw it as valuable. My only cure is a lobotomy. I think the point to positivity is that it really sucks having to face that your only cure is electrocuting your brain. At least, that's how it used to be viewed. People with asperger's used to be mistaken for schizophrenics. And parents of kids with asperger's and autism used to be called "bad parents" by doctors. I like the fact that the social tragedy of quick judgment is being highlighted through autism, and that everyone in general is going to benefit because of it.
"They know that perception of autism runs from people equating it with mental retardation to thinking it a “soft” condition that doesn’t even exist."
...and from thinking it a "soft" condition to 2 more different directions: compassionate people like you thinking it's a spectrum, and anti-compassionate people thinking it's an excuse for them to sexually harass: http://autistscorner.blogspot.com/2009/10/but-what-about-aspie-men.html
@tiyanasmom - " I don't see anyone with autism as a walking tragedy. They are valuable people. The same goes for any person with any disorder or illness. People with MS, diabetes, obesity, MD, bi-polar disorder etc. are beautiful people that contribute to society in a great variety of ways, just like people with autism. Yet we don't need to see their health conditions as positive in order to see the person as worthy, respected and appreciated. It is generally agreed upon that with most diseases/conditions/disorders/heath issues/however-you-want-to-categorize-them are not positive."
Great point!
It's an especially important point for the difficulties that get caused by other people. People with paralysis are beautiful people that contribute to society in a great variety of ways, just like people with autism. Yet we don't need to see paralysis itself as positive. If we did need to see paralysis itself as positive...then what about when another person does the paralyzing? How much gratitude could the people who paralyze other people by drunk driving, drive-by shootings, etc. demand for each case of paralysis they give?
@ZombieMom_Speaks@xanga - I too would like to give you a hug, having 2 kids on the spectrum is something I can only imagine and I am guessing I would not handle it too well. I don't know where you are in the world (I am in Kansas near Kansas City) and what resources you have available to you but if you would like to have a more private email conversation about behavior problems I would like to help if I can. We have dealt with self injury and aggression and have worked with several professionals (PhD in Behavioral psych, Board Certified Behavior Analysts) as well as tried to work with the school district on his behavior problems. I won't pretend that I am an expert but if you just want to sound off about the behaviors you are dealing with I will listen and do my best to respond with any help or compassion I can give. I help lead a local support group and volunteer as a supporting parent through our states family advocacy organization. I consider it a great gift and honor to be able to use the overwhelming experiences I have had to help others. It is the only thing that makes what we have gone through make any sense. I hope you can find a support group or support and resources of some kind. Take care and I wish you the best.
@bluejacky@xanga - Good discussion. I think we're all on the same side in most ways, (which may be the point of this article.) I'm sorry that you had that kind of negativity thrown your way and you have all of my admiration and respect for coming through it so well. I will be thrilled if my daughter is able to live her life as you are and I hope that she always feels that I see her in a positive light. The one good thing about the increase in autism incidence is that people are more aware that people with autism are valuable and can make much of their lives. We've still got a long way to go, but we've come a long way. At the same time, autism really can and does destroy the lives of some very wonderful people. There's nothing positive I can see in that.
I am a mother of a beautiful 8 yr old son who is a severe autistic. I live in a county were there is not enough programming for these children. I had to reliquish custody of my son to his father so he could be in another county that did have schooling for him. I am now and have been fighting for my son in this county so i can get him in school here. I wish communicating with him was easier, it took me 7 years to potty train him and just as long to hear the most wonderful words in the world "ILOVE YOU MOMMY". As hard as life may seem because he is not a Normal child. i would never want to change him, i just want to know understand him better. It is a very hard life i do have 3 other children who are normal, and there just isnt enough hours in a day to make sure all are getting the attention they need because i am so busy with taking care of him. Being autistic isnt a positive thing however they are not a tragedy. I takes alot of work to help these kids but they are worth every second!!! These children are the future weither they are normal or autistic or deformed or mentally retarted or whatever else maybe worng with them! They deseve positive energy and all the love and compassion they need to stive in life.