I’ve been thinking of this post for a long time. Pretty much since the first day the Autism Speaks “I am Autism” video came out.
I would have loved to make a response to the video, as in “I am Socks” or “I am Autism Speaks“.
I’m just not that creative. But I am able to lean on other people’s creativity, which I’ll do here in this blog post. First I’ll restate: First I’ll restate what I have said before: I didn’t like the way “I am autism” put the focus on pretty much everyone except the autistics. I didn’t like how it framed autism in terms of how it costs those of us non autistics. I didn’t like how the heroes of the story weren’t the autistics themselves.
I think a commenter to this blog, Emily reflected much of my views when she commented,
I’m no warrior. I’m doing the job I signed on to do when I decided to bear children. I took on that responsibility—whatever it entailed—when I, an adult, made that decision. There’s nothing warrior like or heroic in that. Heroes face fear and move forward in spite of danger. I can’t lay claim to that.
But these kids who fight every day to learn or bear the inputs around them or self regulate, who live minute by minute in ways that the neurotypical could only vaguely understand if they were packed into a echo chamber full of revving jet planes, these kids and autistic adults are the real fighters. I think of the severely affected children I know, how I’ve known them to work up the courage to do something terrifying to them, something that to a neurotypical would be barely noticeable. I’ve watched these kids hesitate, wait, stim, think, and then rush headlong with extraordinary bravery into it. That’s a hero.
Many people don’t like the way I am framing this. They say that people like me downplay the difficulties of being the parent of an autistic child. I point them to a recent post where Kev noted:
We all struggle. Its damned hard, we all lack services, all autism parents all over the world
Yes we all struggle. Is this supposed to be news to those outside the autism communities?
Guess what, I was a burden to my parents. I cost them money. I cost them heartache. All this even though I am not autistic. I was just their kid.
And, yet, somehow, they never once spoke of me in terms of how much I cost them.
Why should I treat my kid differently?
I am constantly reminded of the old movie Boys Town, and the real life Boys Town that exists to this day. If you remember the movie, you probably know where I am going with this. I admit, the image is a bit sappy by today’s standards, but I keep flashing on the statue and the slogan that Father Flanagan used for Boys Town: “He ain’t heavy, he’s my brother“.
Does anyone really believe the little kid isn’t heavy?
If that doesn’t make the point, let me put it another way. How many disability groups are there where the parents focus attention on themselves and the how much of a burden their children are?
One of the arguments often made is that Autism gets lower private funding that pediatric aids, juvenile diabetes…many other conditions. If those communities can pull in more money than the autism communities, we certainly don’t need to spend our children’s dignity in a quest for funding.
I always try to write as though my child will someday read and understand what I have written. Whether it will come to pass or not is irrelevant. Why should I write differently if I think my kid won’t understand what I say?
If this should come to pass and my kid reads what I have written, I realize that I will have to explain to my kid why at times I have been childish or lost my temper. But my main goal is that I hope to keep to a minimum the number of times I have to apologize for disrespecting my kid.
With all due respect to fellow autism parents Alfonso Cuarón and Billy Mann, I don’t consider “I am autism” to be respectful.
Once again, I will rely on someone else’s words, words from another songwriter. After I listened to “I am autism” I had to listen to this song. I listened over and over again. The song? “For Good” from the musical Wicked by Stephen Schwartz.
Here are the lyrics:
(Glinda) I’ve heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don’t know if I believe that’s true
But I know I’m who I am today
Because I knew youLike a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I’ve been changed for the better?
But because I knew you
I have been changed for good(Elphaba) It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You’ll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend…Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I’ve been changed for the better?
But because I knew you(Glinda) Because I knew you
(Both) I have been changed for good
I have not said that my life is the same as if I never had a family. My life is also different than if my child had somehow been someone else, someone not disabled.
Like any parent, I have been changed by having a family. But when I go, my message to my child is simple: your impact on me is measured in the handprint you left on my heart. You changed me, for good.
If you haven’t heard the song, here it is as sung by Lea Salonga and Jennifer Paz
Left Brain Right Brain 
Which again means you’ve missed the point entirely. I’ve never blamed my children for their autism. I’ve never wished them to be any different that who they are.
BUT, I do not believe they deserve to live at the mercy of the system. I do not believe they should live in a group home, a residential facility, be stuck in a self contained classroom, do without friends, do without a spouse, do without their own children, do without travelling, a job or even their own bank account.
That is what it’s about. I’m still trying to understand the brain transplant crap I read on the boards. My eldest (10) will be as “normal” as whatever is “normal” is, yet he started with mild, non-verbal PDD at 2.5yrs of age and is now mild NLD. He’s the same kid, all we did was teach him to talk (private 3hrs/wk), behave appropriately, social skills, executive functioning skills, homeschooled on top of regular school (30min/day), tutoring (30min/wk), karate, swimming, library programs, scouting. He will be 100% independant.
I want that for his younger bro (8) with Autistic disorder (re-dx’d from PDD, July 2009) and I realize I probably won’t get it. Oh, he reads at a Gr 3 level, but comprehension is Gr 1. Math is done with a calculator. Speech is coming but no “chatting”, there’s always a point to it. He’s learning to play with other children, his classmates are playing on the fenced in side (bolter) with him and helping him learn how…. amazing kids to do that.
I don’t regret it for a moment. But my heart breaks knowing the little one may never be independant. He deserves better. Autism is not glorious, we talk of it being cruel to lock up children with autism, but why is it not cruel to lock up the adults. That’s what happens in the end.
“I do not believe they should live in a group home, a residential facility, be stuck in a self contained classroom, do without friends, do without a spouse, do without their own children, do without travelling, a job or even their own bank account.”
I actually think it’s you who is missing the point. You are assuming that all the things you list are things all people want. For example, my non-autistic grandmother, still young and spy, sold her house and moved into a “residential facility” that could provide her with the things she wanted and needed (a cafeteria, a hospital floor just in case, a cleaning service). For some autistic people, a good residential facility can be a godsend. Same with a self-contained classroom. As for spouse and children? Most of my non-autistic friends are single and do not have children. This is not a crime or some kind of punishment. Through your eyes perhaps a spouse, children, a bank account, and traveling are the things that create happiness, but someone else, particularly an autistic person, might not care at all about those things. The autistic person might be more interested in being treated with dignity, and not being forced to want or need the things their parents think they should want or need.
“For some autistic people, a good residential facility can be a godsend. Same with a self-contained classroom.
…
The autistic person might be more interested in being treated with dignity, and not being forced to want or need the things their parents think they should want or need.”
I said the same thing and was immediately chastised for it. Some autistic people may not even be interested in “community living.” My cousin is profoundly autistic and isn’t much interested in other people: he doesn’t communicate and pushes them away. Why do so many people assume he even wants to be in a community? I think he would be happier in a good group home or residential facility, a place where he gets the continued supervision he needs and where he is allowed to be himself.
Wow, farmwifetwo, way to miss the point yourself. The topic of this post is a response to the “I am autism” video and the way it portrayed only parents as abnegated heroes while the autistic people were shown as less than human. As I read your post I don’t see how it relates to the topic at all.
Moving on…
Sullivan, I’ve been moved by that song since I was a kid, and nowadays when I listen to it, I think of autism as well. Thanks for explaining that the title came from a great old movie.
I fully agree with Emily’s comment. But the problem is, most people want to have children without realizing the amount of responsibility and all the variables and perils involved. Especially nowadays when Science is more advanced (and we have many vaccines), and unlike in our grandparents’ time it is not so common to lose children to diseases and other disasters. We’ve become somewhat spoiled and entitled. “I didn’t sign up for this” is what you hear them say a lot. Maybe that’s why you see so many parents whine and play the victim card and say horrible things about their “not so perfect child” instead of talking about them with the respect and dignity that they deserve. That’s why I think the Hub is so important when it makes parents of autistic people stop and realize, hey, it’s not about you, your child is wonderful, and you should walk this rough path in your life without losing sight of the beautiful things your child can offer you.
“BUT, I do not believe they deserve to live at the mercy of the system. I do not believe they should live in a group home, a residential facility, be stuck in a self contained classroom, do without friends, do without a spouse, do without their own children, do without travelling, a job or even their own bank account.”
So do I. That is why I a member of ASAN and an advocate for neurodiversity. Your goals for you son? Are shared by virtually everyone under the banner of neurodiversity.
Way to miss the point yourself.
farmwife2 starts with the statement that she doesn’t blame her children for their autism. Odd statement, that, since I didn’t say or imply that she (or the makers of I am autism) blame their children for their children’s autism.
I will point out that she successfully focused all attention on her own discussion points.
I really enjoyed this post. I read a lot of your posts and comments and arguments and so on. There are many conflicting emotions I go through on a daily basis. From diagnosis to now, we have travelled in many different directions but I feel finally we are heading in the right one.
Thanks.
If you watch the I Am Autism video, it basically says the above is what should be expected of autistic people.
Do without friends? Do without a spouse? The video says that autistic people case marriages to fail (false claim) and cause embarrassment to those around them. Who will want to befriend autistic people? Who will want to marry them?
So you have to ask yourself: Does the I Am Autism video actually help or hurt?
Wow Sullivan, I’m sitting here at work reading this and trying furiously to blink back tears. What a beautiful piece. Though Owen’s not my biological child, I’ve been in his life from pre-diagnosis on and the best gift I could give my family was just letting go of my expectations. Sure, he may not be the cool kid who skates and surfs, but I’m also pretty sure he won’t be drunkenly wrapping his car around a mailbox at 4 in the morning. He has a best friend, teachers who appreciate his off-beat sense of humor, two dogs who follow him everywhere, and a stepmom and dad who love him very much. He’s a good kid and has made me a better person for it.
I have often wondered what children like Will Redwood think when mom takes him to a rallies and conferences where he’s told he’s a toxic mess and then put on display to show how he can pass for normal thanks to quackery (The google video is painful). Can you imagine watching “I am Autism” as the child of Alfonso Cuaron or Billy Mann?
It pains me that my son is subject to demonizing by the very charities and advocacy groups that are supposedly trying to help.
betsbetsbets, Bariah, thanks for the good words. I hope I am on the right path.
Tom, I don’t want to speculate on any other family. I will say that I can’t imagine trying to explain to my kid, “it isn’t *you* that bankrupted us and caused our divorce, it is your autism” I really can’t imagine saying, “you are toxic”.
It pains me that my son is subject to demonizing by the very charities and advocacy groups that are supposedly trying to help
I hear that loud and clear.
I’m not always the parent I want to be – I get tired, I get frustrated and I lose my temper. At one point, I even cried out “Why me? What did I do to deserve this?” – “this” being an autistic child.
Eventually I remembered that life isn’t “fair” – not even close to fair. I don’t have anyone or anything to blame, apart from my own desire to have children. Strangely enough, once I stopped being sorry for myself, raising my autistic child became much easier.
Maybe that’s a correlation in need of study – “Does self-pity cause higher parental reports of autistic behaviors?”
When I saw the “I Am Autism” video, I was disgusted – partly by their attempt to stigmatise autism and partly because I recognised my earlier self in its “pity us” tone.
FW2 complains:
Great! If that’s what you believe, then the best way to achieve that goal is to work toward getting support for autistic people, because you most likely won’t find a “cure” for autism.
Like it or not, we all “live at the mercy of the system”. If you doubt that, try making your own rules – try driving on the right side of the road in the UK. See where that gets you. The solution is to get “the system” to change.
As for the rest, I often wonder what my autistic child thinks about his disability. Does he wish he could do things that the other kids do or is he happier when we don’t try to “help” him “be like everybody else”? I may never know. Try as I might, I can’t put myself in his position because I have no idea what it is like. I doubt that it is at all like what I might imagine it to be.
So, whenever I start to feel sorry for my son because he won’t experience some of the things I have, I try to remember that he might not want to do some of those things. And I try to remember that the person I am pitying is ultimately myself.
Prometheus
Great post. I am the parent of an autistic boy who is about to turn 7. He received his first stripe today in karate and he is on his way towards his first belt. I can’t even tell you how proud we are of him. He overcomes so much on a daily basis, and me? Me, I’m just doing what I’ve always wanted to do, be a parent. So I agree, I’m no hero. My son is the hero. He is the one who overcomes the sound of the fire drill piercing his ears, he speaks to get my attention even though he tells me that he does not like to speak that he prefers to be silent, he hugs me at night and doesn’t want to sleep alone for “I am his best friend” cause let’s face it, he doesn’t really have any friends. He has never been invited to a birthday party, he is scared to death of a movie theater and he doesn’t have a clue as to why you have to pull up your pants before you leave the bathroom. But you know what, he tries to figure it all out and he tries so hard to be part of our world. He doesn’t care about a yellow stripe on his belt, but he thinks I do and therefore he tells me about it. He’s the greatest friggin kid I’ve ever met.
Sullivan, I think that FW2 made the statement that she doesn’t blame her children for their autism because she has to blame someone. The blaming and the holding some party responsible so the “evil” that is autism can be displaced onto that responsible party and that party demonized is how she copes with her feelings about autism.
That is why the anti-vaccine hysteria won’t go away. The anti-vaxers need something to focus their feelings of anger and hatred on. It is a selfish act, an act that asuages their feelings rather than actually accomplishing something productive.
What is wrong with you people? A victim is not a hero/warrior. A warrior/hero does something heroic. Being autistic and prefering to be alone and have no positive influence or part in any community (as one comment suggested) is not being a hero. “Warrior moms” focuses on the struggle to do something good for you kid–trying a very difficult to manage diet, doing your own research, standing up to people who put you down when what you’re doing for your kid is working–even if it’s not “scientifically accepted” by the AMA. And about letting a child wallow in autism because they’d rather be alone in their own state funded house with support staff is also not heroic and not okay. I myself would LOVE to have the state pay for my house and allow me to be alone most of the time to do whatever I want. But I’m a doctor and have the stress of running a business, paying down my student loans, and interacting with family, friends, and patients because I am a warrior and I’m helping people. Letting people continue in their autism cost us ALL. Every single autistic person gets disability payments their entire adulthood. Every IEP in the school costs local tax dollars. You parents who refuse to make the effort with trying anything that will help, no matter how difficult or expensive blows my mind. You are NOT warriors. Letting your kid “be themself” and putting them in an institution or private house is not the way of a warrior.
Sharyl,
thanks for demonstrating that some people don’t read for content.
“You parents who refuse to make the effort with trying anything that will help, no matter how difficult or expensive blows my mind.”
Where the hell does that statement come from, if you will excuse me for being rather blunt? You have zero idea how much effort I have put out. Zero.
If I chose the safety of my child over the gamble that some unproven “treatment” based on junk science may help, that is my choice and my responsibility as a parent.
If I chose to praise my child for the extreme efforts involved in overcoming challenges, that is my right as a parent. My child is a hero.
It is not my way either. Thank you very much. Where ever did you get that idea? But, as far as being a warrior goes, thank you. I accept that I am not a warrior.
Don’t let the spotlight you have placed on yourself blind you too much.
Sharyl: It’s clear you’ve been at the Jenny McCarthy-flavored Kool-Aid with all this “warrior mom” ridiculousness. Let me make this perfectly clear to you: my stepson is not neurotypical. It doesn’t mean he’s damaged, poisoned, toxic, or what have you. It means he has a human right to own the neurology he was born with. And if you think that I, or anyone of us here is neglecting our children because we don’t chelate them, or stuff them in hyperbaric chambers, or subject them to other ghastly experimental indignities not approved by the AMA, then you are sadly deluded. Because we don’t put them through unnecessary, and even cruel biomedical procedures, is because we have done our research and because we love them and would never, ever want to hurt them. As for your contention that they’ll somehow burden the state left to their neuro-atypical devices, I would tell you that there are many autistics who hold jobs, are self-sufficient, and aren’t looking for a hand-out from you. So save your GFCF mommy-warrior bullshite for AoA– we don’t need you here.
So Sheryl I have a question. Do you think it’s ethical to give your children untested probably dangerous treatments without them understanding why?
Sheryl: “Every single autistic person gets disability payments their entire adulthood.”
Umm… that statement is just so bloody wrong that it’s hard to know where to start refuting it. Firstly, it is patently untrue: if it were true, then the not-yet-diagnosed autistic person would be getting them and clearly that cannot happen! Secondly, many people who are diagnosed with an autistic spectrum condition (F84.0, F84.1, F84.5) do NOT get disability payments throughout their adult lives. Many people don’t get them during childhood, even with the diagnosis. My clinical picture as a child was that of a high-IQ classically autistic child (basically, what Kanner described), but the typical thing that happens in autistic development happened to me (see Kanner’s 1973 30-year follow-up paper on the original 1943 paper examinees) – and I have an adult diagnosis of F84.5 (Asperger syndrome). I got disability payments in the UK for about a year, and then I moved to Finland, where I get absolutely nothing. And I am by no means the only one in this category.
For a doctor, you don’t show the reading or thinking skills one would expect of such a professional if you go about making such sweeping statements as you have done.
And Nightstorms’s question, based on your statement (“You parents who refuse to make the effort with trying anything that will help, no matter how difficult or expensive blows my mind”), is valid. Unlike your attitude.
Got three young friends with Aspergers, I love them all, especially one of them, he’s my angel, life is hard for any 15 year old and these lads have it worse as they fight within themselves everyday, they are my little heros and I rejoice at their courage and fortitude, and celebrate their acheivements, howver small they seem to other people, its a victory for them.
An earlier post says she signed up for parenthood whatever the concequenses, I have two children, my son is Dyslexic, but that doesnt stop him, but he’s been labelled at school. Good wishes to all of you, with the challenges of parenthood. As to whatever NORMAL is is what’s happening to you, everyone is different. Normal children in one family wont be normal to another. Dont get too wrapped up with red tape and try to keep strong, these kids are worth it.
Correct. In fact, the NHS survey found that autistic adults in the UK are mostly not getting services. It’s also clear the vast majority do not live in institutions.
Other than that, I agree that autistic people should not be called “heroes.” That strikes me as condescending. My son is not heroic. He’s my son, and that’s remarkable enough.
Moms are also not “warrior moms” though. There are simply moms who assume their responsibilities as parents and those who do not. There are also those who moan all the time about the types of children they happen to have gotten. Experimenting biomedically on children with all sorts of completely implausible (and possibly dangerous) crap does not make one warrior-like.
Other than that, I agree that autistic people should not be called “heroes.” That strikes me as condescending. My son is not heroic. He’s my son, and that’s remarkable enough.
I don’t think all autistics are heroes. But, when we parents talk about our children’s achievements I think it is right to focus the acknowledgment on the child, not the parent.
I am incredibly proud of my child. I acknowledge that some of the achievements are at least as remarkable as those achievements conventionally considered outstanding by parents and teachers.
Certainly parental pride is acceptable. If admiring other kids with similar achievements is condescending, I am good with that.
Sheryl: “Every single autistic person gets disability payments their entire adulthood.”
State your source…