When the Autism Speaks “I am autism” video came out, I really didn’t like it. It was on such a primal level that I couldn’t put words to how much or why I found it offensive.
One problem with leaving my reasoning unsaid is that many people reach the wrong conclusions. I have read here and elsewhere complaints that people like myself who criticize “I am autism” don’t understand that it is about the most challenged (low functioning) autistics.
I would say that anyone who thinks “I am autism” is about the challenges of autistics (“high functioning” or “low functioning”) didn’t pay close attention to the video.
Here it is again. (and here is a transcript)
Of course, some people understood where I was coming from. Fellow parent, Monica, wrote in the comments:
My voice isn’t the one that matters when it comes to autism. It really does take an idiot not to get that. I think a lot of my role as a parent is shutting up and listening. Until I am able to be quiet long enough that I can understand what they are wanting/needing I have no business being anyone’s voice. That’s a lesson that Autism Speaks obviously hasn’t learned.
It has been said that most stories have three main elements: a villain, a victim and a hero. “I am autism” certainly uses this three-pronged plot device. Let’s take a look:
The Villain: Autism
Autism Speaks very clearly has cast “autism” as the villain. Autism has no morality. Autism doesn’t know right or wrong. Autism wants to steal our children and our dreams.
Autism is some sort of science fiction monster or demon who stalks our children.
The victims: Parents
Watch the video and ask: Who is affected by autism? If all we had was the video to go by, the answer would be simple: Parents. Autism takes money away from…parents. Autism ruins the marriages of…parents. When a child has a meltdown in a public place, a park or temple or birthday party, it is the parents who are embarrassed. The death of a parent is important in the fact that the parent dies worrying about who will take care of their child or children.
The heroes: Parents
Yes, the parents are cast in two roles, victims and heroes. OK, not just parents. Grandparents, brothers and sisters are also heroes. Teachers, therapists, pediatricians and scientists get supporting roles as heroes as well. They are a community of warriors.
OK, that’s what I don’t like. If I were to make an appeal for funding (which is what I assume “I am autism” is for Autism Speaks), how would I frame it? What would I change?
First, autistics were given no voices in this video. It is all people speaking for autistics. Leaving autistics out is wrong on so many levels. Many, many levels. I could write the entire blog post on that one topic, and still have people pointing out things I missed.
Second, they still pose the discussion as primarily about children. There is at least one adult shown in the videos, but by far most of the video and voiceover is about children. Autism Speaks claims that there are 1.5 million autistics in the U.S. Perhaps it is time they acknowledged the 1.0 million adults and not just the half million children.
Third, I don’t like the victim device. No, I am not saying that autistics don’t face challenges, or that the challenges some face are very, very great. I am not in denial of that. I just don’t like victimizing the people you are purporting to help. It is paternalistic and it is counterproductive to many of the goals that are very important, like trying to help people live as independent a life as possible.
Which brings us to the fourth point:
Fourth, with apologies to my fellow parents, but the autistics really are the heroes. There are kids working harder in kindergarten than some people work in grad school. There are adults working harder just to get through the day than I do at work. If we are supposed to pity the parent who is embarrassed by their child in the park, how about some compassion for the child (or adult) undergoing the meltdown? We are supposed to feel the pain of the parent who wakes up crying wondering about “who will take care of my child after I die”. How about the autistic who will spend most of his/her life without a parent caregiver?
Who, really, is the hero? When will Autism Speaks get it that it is time to stop patting themselves on their own backs and start acknowledging the accomplishments of their children and the many autistics in the world. Autism Speaks could go a long way towards that by integrating their own organization with the very people they purport to represent: autistics. Get some autistics into Autism Speaks and start listening.
Left Brain Right Brain 
I so agree with you on so many points here. When I watched it for the first time yesterday I was deeply offended on several levels. I am still too angry to express my feelings properly. Yesterday I emailed autism speaks UK, which is where I live, to say how I felt, that I was offended, and I hoped they would not be using this film for any sort of promotion here. Thankfully this was their response..
..’The UK charity Autism Speaks is a separate entity from the US charity of the same name. Autism Speaks UK did not contribute to the making of this video and we do not share or support the views expressed in it, which are those of certain members of the board of trustees of Autism Speaks in the USA’..
They forwarded my thoughts to autism speaks in the states, here is their response..
..’Thank you for contacting Autism Speaks. I am sorry that you found the video offensive. That was absolutely neither our nor the creator’s purpose.
The short film I Am Autism was created by two fathers of children with autism – Billy Mann, a Grammy-nominated songwriter, music producer and Autism Speaks board member, and Alfonso Cuarón, an Academy award-nominated film director. Set to a personal poem by Mr. Mann, the short film features home video footage voluntarily contributed by families around the world affected by autism. It is an intensely personal expression by these two fathers and their hope is that the piece inspires other voices and artists in the autism community.
Autism Speaks believes that all individuals with autism and their families, regardless of their perspective or the nature of their disorder, should have the power to be heard.
No one perspective can ever be the definitive voice of autism. We encourage everyone in the autism community to acknowledge the myriad voices and have tolerance for the spectrum of opinions.’..
The following is what I have sent back to them…
‘I assure you that I appreciate the credentials and personal connections involved in the production of this film, which of itself, is admirable. I also appreciate that I am speaking from a British perspective, where health care and society are viewed differently from what appears to be the US perspective.
I sincerely hope that more people in the autistic community are moved to express their feelings by seeing this film. From my own personal experience as the mother of a 23 year old woman with severe autism, had I seen this film 22 years ago I would have been in despair, and yesterday as I watched the film I could only wonder at the distress it will cause. Personally, I will be suggesting that several people I know with autism including my own daughter, should not watch it should the opportunity arise, I know they would find it an uncomfortable and upsetting experience.
Again, I appreciate the personal nature of this short film and presumably personal finance and time was used to produce this work. May I humbly suggest that less affluent people in the autistic community, world wide, would have a different take on how autism affects them and are not in position to produce such eloquent works of art, nor the means and connections to make them public.’
As you can probably tell, I am still angry. This ‘short film’ is offensive and dangerous on so many levels.. Ivory towers come to mind..
“They are a community of warriors.
OK, that’s what I don’t like. If I were to make an appeal for funding (which is what I assume “I am autism” is for Autism Speaks), how would I frame it? What would I change?”
Damned right we are. Who do you think helps, works, fights to get that child, that adult everything they deserve, everything they require to live a happily, content life. One that helps them live with the disability that is autism in a manner that is positive and productive.
Isn’t the autistic.
Who sits through all those meetings – like my IEP’s (x2) yesterday – and Kristina’s today.
Isn’t the autistic.
Who fights for their child’s happiness in a group home setting (Susan Senator, Casdok) and tries hard to come up with a perfect solution to a problem and a system that is anything but perfect.
Isn’t the autistic.
As for those that live without services… if you can manage without them… then you don’t need the diagnosis. That makes you as normal as the rest of us. So, don’t EVER talk for us that do live with those that cannot speak for themselves as we try our DAMNEDEST to give them the best life, the happiest life, we can for them.
Read more: https://leftbrainrightbrain.co.uk/?p=3226#ixzz0S7MIiSbG
Well said, Sullivan. Nowhere in this video was the autistic individual considered. How many young parents will see this and think their marriage is doomed to fail, will take this personification of autism and place it onto their child and see their child as the monstrous entity AS presented autism as?
How did this promote acceptance for autistic individuals, empathy for their challenges, appreciation for their strengths? How did this promote community building? How did it advocate for adaptive coping and resiliency?
As Sam on Burn Notice would say, bunch of bitchy, whiny…. You know? That’s what I walk away from the video with. And my disappointment increases with this subset of parents who would present autism as a monster trying to destroy their lives rather than focusing on how autism effects the child, not to mention how such maladaptive coping on the parents’ parts does.
You’ve had lots of comments on Guest Blogger’s post; those parents locked into their autism-mercury world truly don’t see their behavior (as detailed on that post) as abusive. If they engaged in the kind of crackpot therapies with a child with Down Syndrome; if a parent placed a nicotine patch on a child with CP, would this be tolerated? Just because you as a parent find a doctor willing to take your cash and hold your hand as you engage in woo doesn’t make your actions or the doctor’s ethical, moral, or even legal. I tell you what, maybe I’d have more appreciation for these types of parents if they were sticking those supplements and the IVIG and the chelation down their own throats and into their own bodies before they made their children into guinea pigs.
This film is appealing to those parents.
Why apologize to us? Yeah, we work hard. That’s nothing compared to the work our Joey does to try to communicate, move, and connect- and that’s just a small part of what he must do not only to survive, but to grow and thrive in the world.
No doubt here- Joey is the hero. We’re just the Robin to his Batman.
Are you seriously kidding me, farmwifetwo? You just proved the entire point I made even as you were making yours. It’s all about the parent. Wow. How can you have that much contempt for autistic adults? Do you not get that children grow up and become adults, and autistic children grow up to become autistic adults? What the hell? Every now and then you’ll make a post as you did at Emily’s where I go, okay, that wasn’t bad. You did that just the other day, and I though, well, okay, she can offer something relatively positive.
And then you go and doubly make up for that.
You get more bitter by the month. Serously, since I have three on the spectrum, one of whom is a beautiful adult son who is significantly impaired and not going to achieve even partial independence, does my voice count, since you have just written that the adult autistic’s does not?
@farmwifetwo: No, you’re not a warrior, you’re just a parent, doing what a parent feels they have to do. I’m just a parent too. Don’t pat yourself on the back too much there or you might hurt yourself.
I didn’t like the part of the post about autistic people being heroes, either, to be honest.
Autism Speaks should take note of this. A much better video would be letting the autistic kids and adults talk (or type) about their challenges, or maybe just show them going about their lives. That would be much more poignant than the “scary-mocking” voice over of the narrator or the whiny tone of the parents.
Autism speaks ALOT differently in our home. And I wish that “Autism Speaks” would stop trying to speak for all of us. Is there a point in a parent’s life where they might only hear a “voice” that sounds like the one this filmmaker says belongs to autism? The voice I heard in the film did not and does not belong to the autism we know. It sounds more like the voice of one’s own self-doubt when presented with a parenting experience that is unexpected or different from most, from the frustration of trying to connect with your child in a way you feel comfortable without realizing that they might want to connect with you in a different way, from the exhaustion of trying to break free from society’s restraints on its members that think and act differently, from feelings of guilt and inadequacy because you don’t have enough resources to provide what is needed, from the anxiety of encountering a general lack of understanding and tolerance from the public at large. Sometimes, it can be a challenge to ignore that “voice”. In my house, we try our best not to listen to it anymore. Instead, we just accept each other, stay focused on our strengths, and celebrate the gifts we have to offer.
I hope you will check out this video.
http://www.nomyths.org
Why can’t it be Autism LISTENS to actual autistic people instead of leaving them out?
No, it’s all about the parents and their dreams of so–called normal children who don’t even exist. Never mind the challenges folks with autism go through. The bullying. Parents pushing them into the round hole of a normal that isn’t real. That needs to be let go of so they can REALLY understand what their child is trying to communicate.
It’s just annoying for autism to be framed that way. As some sort of inconvenience for the parent. But it’s really hard to be different in a world that is hostile towards your difference.
They ought to look at ways to stop aversives, give support to children in school, give support to adults trying to make it in the confusing NT world. That sort of thing.
But they don’t want to listen. They WILL not listen. They will only drown out the voices of people they claim to want to help, and that’s quite sad.
They’re really missing out.
Kwombles:
Back when we first got internet in the mid-1990s I looked at lots of different disability boards. Back then they were either message boards run by the ISP (ours was Compuserve) or Usenet. There was not much about my kid’s diagnosis (he just turned 21, and I remember how hard it was to get folks to understand that it was not normal for a sweet affectionate three-year old to be non-verbal). I read about other crackpot ideas, and yes, they were being used on kids with Down Syndrome and cerebral palsy.
Carnitine was one of things I think were first proposed by parents of kids with Down Syndrome, and I found this post:
DS & Leukemia-carnitine deficiency.
And of course there was the Doman-Delacato patterning method of intensive physical therapy that was pushed heavily in the late 1980s and early 1990s. Glenn Doman’s books were just long advertisements for his institute in Philadelphia, and there are some offshoots still around. Alex Doman’s outfit in Utah posted an ad for Autism Twitter Day on this blog (I challenged them on their qualifications, and they were very nice to admit that young Mister Doman did not really have any). Here is another Usenet posting about the effect of the intensive physical therapy: “Questions about patterning was Re: I feel vindicated”.
The biggest difference is that the causes of DS and CP are known (CP not quite, though I did have one rabid anti-vax mom on the listserv I was on tell me she knew of three kids at the Mayo Clinic who got cerebral palsy from vaccines!). Perhaps that is why you don’t see Down Syndrome or cerebral palsy kids treated the way autistic kids are by Autism Speaks and the parents who are typing away on the other post on this blog.
@farmwifetwo:
I agree that parents of children with disabilites are warriors (although I disagree with your assertion that those with the disabilies are not in the fighting.) What bothers me in the AS video, as in much else they say, is that they seem to be at war with autistics, rather than with the all those things that make life for families with autism much more difficult–things like fear, and prejudice, and ignorance.
Many of us fight little wars every day; sometimes as co-warriors with our kids, and sometimes on their behalf. That’s not what I get from this video. I get that “we parents are the warriors, and our kids are the inert collateral damage.” YMMV, of course.
I agree with you that no one group should presume to talk for another, even within the autism community (which is not homogenous) but that is precisely what AS claims to do.
I don’t feel that I am the hero at all (as a parent). I agree with your assessment. My child works so hard on a daily basis. I have so much respect for him. He is my inspiration. He is my hero. But neither of us is fighting a battle against autism. All the problems I have come across are not with autism, but other people’s misconception of autism.
I completely agree with this post. After the initial anger and multiple viewings of the video, I sat down and thought about the reasons it made me so angry. The first thing that I came up with was that it was all about the parents.
I think there seems to be two type of parents of autistic children, those who are devastated by their child having autism and those like me who accept it and become stronger, better because of it. I certianly do not feel I deserve some award for sitting through an IEP meeting.
I think some people have a very difficult time coming to terms with their children being different. I just can’t stand when people try to group autism with things like pediatric aids and cancer like they did in the video. How can you compare autism to something that kills children. My son is very much alive and healthy. I get to treasure his smiling face everyday. I think it is pretty insulting to mother’s who have lost their children to such illnesses.
The parents that this video speaks for can not possibly see down the road when their children become autistic adults. They are so consumed with “curing or recovering” their child today, that they do not even want to think about tomorrow. These are the same parents that desperatly need to blame something or someone for their child’s autism.
I am disheartened that a majority of the world thinks that Autism Speaks and that video in particular are an acurate representation of autism and our community.
That annoys me as a person who ACTUALLY HAD CANCER between the ages of 2-5.
Couldn’t they find a more respectful way of trying to get people to donate money to them?
“Fourth, with apologies to my fellow parents, but the autistics really are the heroes.”
Yes.
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.
Sigh… Well I tell you what, as a parent of a child diagnosed with autism, autism ought to scare the sh*t out of every new parent on the planet. It’s not something you wish upon your child, hell, any child. That’s what this video was about.
Autism is the devil. I realize it is a part of who my child is, but my son was not born with autism, he was injected with it. I know who my son is, I held him, played with him, talked with him, looked him in the eyes and laughed with him for the first year of his life, 366 days to be exact, then he changed, drifted away, replaced with someone we didn’t recognize. It took a long time, hard work to find him, we get a piece or two back every now and then. No one loves anyone more than we love Ben and no one HATES anything more in this world than I hate autism. Saying Ben is autistic is like saying saying a child victim of a gunshot wound to the head is a bullet hole. Our children are victims of an environmental toxin that presents itself as having characteristics of autism. They are victims, they are not bullet holes.
I will do all that I can possibly do to destroy autism in my son, and when I get done with that I will move on to others. I know who my son is, I will never forget, and for all I know he is indeed suffering and wants to be saved…. before he forgets who he really is.
Ben is NOT autistic, he is not a bullet hole, he is a victim of a poisoning, a boy with a brain injury that presents himself as someone with the characteristics of autism.
If some of you are too scared to admit how evil autism is and too hurt to accept your child’s suffering and pain, then why not just push him off a bridge and go have cocktails with your boyfriend and forget about it. But I can hear him scream, others can too, we want to save him, we want to save those who are yet to be born, we want to do everything we can do, die trying if we have to. We are warriors and damn proud of it.
Why do these discussions always devolve into people claiming that those of us who fight for the dignity of our children are ignoring or in denial of our children’s suffering.
I will work tirelessly to overcome any and all pain my child suffers.
I include in that emotional pain. I consider that quite real. Emotional pain can stem from being stigmatized by the perception that one has a “devil” inside, causing one to act very different from most people.
I think I will pass on the chance to push my child off a bridge, if you don’t mind.
Thanks all. My son had seizures as an infant. He was disabled by the seizures during a real illness as a baby, plus multiple stays in the hospital until he was three years old. He has medical issues that require medication for the rest of his life.
And he is still a wonderful young man who may never live away from home or hold a job. I resent you folks for thinking that children like mine are better of dead.
You have no real evidence that vaccines are poison, yet there is plenty of evidence that the diseases do permanently maim, disable and even kill.
And here you are working very hard to denigrate herd immunity so that more children will become disabled.
Autism is not the devil… these are the devil:
pertussis
diphtheria
tetanus
measles
mumps
rubella
rotavirus
haemophilus influenzae
polio
Leave your your pity party and show me the real evidence that vaccines cause autism! Show me the evidence (real evidence, not anti-vax websites, but real scientific studies… and definitely not the ridiculous paper written by Blaxill and friends) that vaccines cause more harm than the diseases.
I believe my son was born with autism. I noticed the red flag warning signs as early as 6 months even though nobody else believed me. He was born premature. Looking back at his time in the NICU, I can remeber just how much more sensitive he was to noise and being touched compared to the other babies in his wing.
I am not arrogant enough to claim I know the cause of all of autism. I believe that it has been proven that vaccines are not the cause. I can not say if there is another factor that contributes to children regressing after a year of age. I am not a scientist, I am a mother.
What I do know is that I resent someone saying that autism is evil. My son is autistic. And there are a number of autistic people who post on this very site, who are the furthest thing from evil.
I read your comment and can only feel pity for you and your son. He has to grow up in a world where you loath a part of who he is. That you will probably never accept anything other than getting back this “normal” child you once had and now have been robbed of.
I am not looking for a “normal” child. I have been given an angel. Yes, we may have to work harder at certian things. But he is one of the happiest children I know. I am thankful to him for making me a stronger, more compassionate human being. He has taught me to really embrace the little things in life and to not take anything for granted. He is a blessing not a bullet to the head.
Sullivan,
Bensmyson wins the offensive post of the week. I mean, I thought that Jen and Christel were bad, but Bensmyson ties with Mary for offensive. He can stay the hell away from my kids. They weren’t poisoned. They didn’t regress. I didn’t lose them and autism isn’t evil and sure as hell isn’t the devil. But knowing where Bensmyson stands on the situation, in case we’d somehow missed that from the AoA coments, is a good thing. Bensmyson’s attitude perpetuates the stigma against individuals who differ from the neurotypical and is beyond offensive. Bensmyson is autism speaks and is a huge part of the problem.
So I am the devil now huh? I said nothing about any child being better off dead. To me anyone not fighting to recover their child might as well push them off a bridge. My child is NOT autistic, he has autism and because he has been diagnosed with autism he is a victim of environmental toxins, in Ben’s case it was a vaccine manufactured by Merck called ProQuad. It caused encephalitis, that much is a fact, what other neurological damages caused by the encephalitis and or other injuries is unknown at this time. But my science on this took place in front of my eyes. I am sick to death of excusing those of you who have put your brain injured child in your closet saying there is nothing you can do about it, its just the way things are. Have you never wondered what happened?
By not vilifying autism as the devil that it is you are ruining the lives of others. How many children, healthy children have died from anything, car crashes, measles, choking on a balloon, tetanus, gunshot wounds, rotavirus? How many die from autism? 6 months ago a 9 year old girl with autism fell into a fountain and drown in 3 inches of water before someone noticed. Seems to me I read something the other day about John Travolta’s son. Anyone have any idea the number of those with autism that have died from complications of autism?
Autism comes from a brain injury and my son’s autism came from a brain injury caused by a vaccine, yours may have come from something else, statistics show he wasn’t “born” with it. It is environmental which means it is man made.
I did not enlist my son in a program to save the herd from chicken pox or the measles. I was told vaccines are safe and they are not. My son may be a one in a million case but the long and short of it is my son’s life is more important than yours, more important than 100,000 kids lives. He is not autistic, he is a victim of an epidemic that is now being seen in one out of every 38 boys. If you can live with that, to hell with you.
By vilifying autism you’re making life worse for people who ARE autistic.
Because it’s not helping to understand what autism is, how people with autism see the world and how to help them navigate a world that is hostile towards them.
Words like “brain injured” and “victims” don’t do a thing to help that cause at all.
Plus children without autism can die in 3 inches of water. It doesn’t mean autism should be compared to cancer! It’s annoying to do that and doesn’t help at all.
Synesthesia, then say it, say autism is wonderful, it makes greatness, tell us all that children with autism will or can grow up to be the next Einstein. Tell us it can’t be prevented. And most importantly tell us that these children diagnosed with autism want to be that way.
Autism is not a person, it is an epidemic that has the ability to kill.
Yesterday’s news http://www.smh.com.au/national/choking-death-sparks-call-for-cpr-training-20090924-g4se.html
Autism isn’t an epidemic. It’s not a disease. It doesn’t kill like cancer does, which I had from the ages of 2-5 and could have died from.
It’s not well understood, and Autism Speaks just muddies the water.
Not everyone can become the next Einstein. That’s kind of difficult, as Einstein was hyper good in math and most people are not that good in math. Plus they might end up creating something WORSE than nuclear bombs, which folks do not need more of.
But, autistic people should be allowed to reach their full potential like everyone else should be able to.
With all of this talk of, oh, no, my child will never be NORMAL (WHICH DOESN’T EXIST.) that will make things a lot more difficult for autistic people.
Which really is what I think neurodiversity is about.
Perhaps if more people actually tried to understand autistic people instead of just labeling them in the most negative way possible, maybe they’d understand what folks with autism want…
Shame Autism Speaks probably never read With the Light… Great Manga. Especially the part where someone who works with autistic people or had an autistic child said that autism is something you work with and not something you fight.
You are not the devil. You are just a sad and deluded woman who has not come to terms with the fact that your son has autism. You seem determined to make a distinction between autism and being an autistic. Which causes me to wonder why I am wasting my time trying to rationlize with someone who is obviously irrational. You shudder to have your child labeled as an autistic like it’s a dirty word. You are just sad.
Wow, BenMySon- I am sorry to say, is a complete and utter ignorant idiot. I have autism myself, Aspergers, I’m 19 — and in NO way is it bad enough that I need to be “pushed off a bridge” for for not being able to fix it. “Complications of autism”? It’s a social disorder. Give me a break. The child drowning could have happened to any child. You truly sound like you are the one not cut out to be a mother – your child would be far better off with somebody who can actually see them as a human, and love them as they are, rather than trying to kill something that they have inside them. Just because the child is different, doesn’t mean it is suffering. I have lived 19 years with autism and I have never thought it “suffering”. Not enough to kill myself over. Sure, life is more difficult, but we are stronger for it. We can make friends and get married to people who can actually accept us, and people like you, BenMySon, are what makes our lives difficult. It’s not the autism, it’s people like you.
You are ridiculous. And this video, as well as benmyson’s ignorant comments both enrage me and make me feel desperately ill.
Saying that autism is a killer is like saying that maleness is a killer, assuming that in fact autistics have a somewhat higher risk of choking, drowning and so forth than non-autistics (not exactly a demonstrated fact, but plausible.) The risk of death in autism is still quite small to be an actual constant worry people should have.
Those sorts of arguments are pretty ignorant. The “epidemic” (or “autistic adults don’t exist”) argument is starting to get to the point where it’s going to be considered a form of denialism in a few years. The “it’s like my son was shot in the head” argument is ridiculous on its face, and is clearly just a way of blaming an external force for the kid’s condition.
I know you weren’t speaking to me directly, but I will answer anyway.
If I felt that way I wouldn’t spend so much time advocating for a better life for adults. That is something I find sorely lacking in most autism organizations.
“My son may be a one in a million case but the long and short of it is my son’s life is more important than yours, more important than 100,000 kids lives.”
You are a self-absorbed, evil bitch. You’re so greedy to feel good in the moment that you’ll do and say anything, and most obviously as you just revealed, sacrifice anyone and everyone to get your little feel-good ego fix. Look down the road, woman. For once in your life, try and think about the consequences of your actions as they really are, rather than the fantasy you keep selfishly indulging yourself with. You’re not accomplishing anything good AT ALL with your current approach.
And most importantly tell us that these children diagnosed with autism want to be that way.
Well, troll, I have autism and I want to be this way. I bet your son wants you to stop harassing him and accept him, too, but I doubt you ever will until he’s old enough to remove himself from your abuse.
“but the autistics really are the heroes. There are kids working harder in kindergarten than some people work in grad school. There are adults working harder just to get through the day than I do at work.”
Very well said Sullivan.
What I do for my kids is nothing compared to what they accomplish every single day.
Parents need to get over themselves.
“I have autism and I want to be this way.”
Of course you do, most schizophrenics will refuse to take medication because it alters them, they do not want to change either.
Some people are just not cut out to be parents. Some people are not cut out to be human beings. Some of those people happen to be parents to children with autism.
“But, autistic people should be allowed to reach their full potential like everyone else should be able to.”
Exactly my point. But how is it a 3 year old works to reach his full potential without help? He can’t, he needs parents who see his autism as something that needs immediate, aggressive therapy with a goal of reaching this potential. My anger is that when parents who have come to “accept” their child’s brain injury as a personality difference, a quirk in socialization, they come between my son and his potential. How do I get legislators to hear me when their neighbor refuses to accept the severity of their child’s brain injury and it’s cause. How do I force a school system to aggressively work with my child, to heal those torn neurons and synapses, when other parents look at school as free daycare instead of an opportunity to free their child from autism?
We need someone to stand up and say autism sucks and it looks as if Autism Speaks has done that.
I know some of you do not have the strength to accept the reality of your child’s problem, the truth is crushing and potentially life threatening. It is a broad spectrum, some of you stated you have been diagnosed with autism but know that on the other end of the spectrum are others, many others who as adults need around the clock care and feeding, totally dependent on others in order to survive. Do not focus the spotlight on your miraculous ability to cope in society at the expense of the majority of others whose lives may actually depend on someone less selfish.
And no, a typical 9 year old that slips and falls in 3 inches of water will not drown as the girl with autism did. Why the care person of this child wasn’t arrested is a sick mystery only some of you I’m sure will want to explain away as “stuff happens”.
I think this is where you are mistaken. You assume that because I accept my son has autism that I am not working just as hard as you for him to realize his potential. He goes to therapy five days a week. I drive him twice a week an hour there and an hour back in order for him to recieve private one on one therapy, which we can not afford. When we are not in school, we are working at home.
I am a huge advocate for my son. I pushed for a diagnosis when all of the doctors around me said it was to early to tell. I moved for a period of time in with my parents because my husband was in school and the small town we lived in did not offer the services he needed. I don’t think anyone on this site does not want better services to be provided for autism.
Here is where we differ. I do not find the truth of my son having autism to be “crushing or potentially life threatening” no more than I would find a son who was deaf, blind, or handicapped to be “crushing”.
You are obviously incapable of showing any real compassion or feeling for people with autism. You think you are a warrior but you are at war with the wrong thing. You think the only way to get action is by vilifying autism but at the end of the day you are vilifying your son. Why would we as a community want to further stigmatize our children? Why would we want to make them sound like monsters? If we can not see the beauty in them, how can we expect others to accept them.
Well said, Shanna. I read this last Bensmyson comment and came here to respond and saw your response. Thank you so very much for such a well-reasoned, calm response.
I would add that Bensmyson not only appears to be incapable of showing compassion for autistic individuals, he/she appears to be unable to engage in more than black and white thinking. Acceptance and appreciation has nothing to do with not assiting, teaching, caring for or working with our autistic children, and for you to continue with that vein of thought, Bensmyson, is offensive and accurate and clearly reveals that you see yourself in a martyr’s role. It isn’t about your child, it isn’t about autistic children or adults, and it isn’t about facts. It’s about you and your need to be morally superior.
What a shame.
Shanna you are a voice of reason. You are the selfless, the loving, the power behind your son’s future. I totally respect your dedication to your son.
In most cases someone with the disability of blindness or any of the other “handicaps” there is no real escape. However in cases of autism statistics show that some within the spectrum are able to escape BECAUSE of parents exactly like you, those who see autism as something that should be treated aggressively, sacrificed for, advocated against.
My son’s autism was man made, it makes me extremely angry that he is a victim of an epidemic that quite possibly could have been prevented. My hatred towards autism is because of my love for my child, I do not accept autism as an identifier as to who he is anymore than I would identify a friend of mine as a “rape victim”. Her life is ruined right now because of an assault against her robbing her of many of the trusts and security in her social environment. She has changed, not for the better. The rapist has been identified and my friend is struggling with confronting her perpetrator in open court, reliving her victimization. Should she accept what has happened to her, forgive the evil that crushed her spirit or should she fight it with every ounce of strength she can muster? Again, my child is a victim. Autism is a product of that victimization, much the same as depression is with my friend. Both are debilitating issues and potentially life threatening if ignored…. or “accepted.” How does one accept being raped? How does one accept their child being raped? How do I accept my son being “autistic”… I don’t and apparently neither does Autism Speaks.
Jeez, I seriously had it up to here with the lying scumbag Farmwife2.
Autistics make huge efforts helping each other, whether that’s ASAN, message boards, e-mail lists, or websites like autistics.org.
Speaking of which, we’re trying to raise some money to help Kat get her wheelchair repaired.
Link.
I know some of you do not have the strength to accept the reality of your child’s problem, the truth is crushing and potentially life threatening.
That was a very well crafted pat on your own back. Don’t think it wasn’t obvious, though.
My anger is that when parents who have come to “accept” their child’s brain injury as a personality difference, a quirk in socialization, they come between my son and his potential.
And that would be a classic straw-man argument. Shanna and Kwombles have already deconstructed that quite well. I will once again note a very clever crafting of your message. You slip in a reference to the tired “they are parents of high functioning kids” theme.
It seems you weren’t content with clever, since you then had to beat it into us that this is (supposedly) a divide between “high functioning” and “low functioning” autistics.
It isn’t.
You are obviously very clever. I guess I just don’t see why you aren’t clever enough to advocate for your child without demonizing mine.
“I guess I just don’t see why you aren’t clever enough to advocate for your child without demonizing mine.”
Sullivan please understand I do have compassion for your child. I have absolutely NO compassion for autism, Im sorry that you confuse the two.
Sullivan please understand I do have compassion for your child. I have absolutely NO compassion for autism, Im sorry that you confuse the two.
I have no doubt that you have compassion for my child. I believe that the people at Autism Speaks have compassion for my child.
Their actions, however, don’t show it.
I’m sorry that you don’t see that.
One thing I should have said when this video first was released–
It is easy to point out the reference to voodoo in the video and liken it to biomed.
I do think that in this case, the director was referring to the multi-cultural approaches to autism. I am not a follower of voodoo (vodun), but I do think of it (in the real form) as a real religion.
http://www.religioustolerance.org/voodoo.htm
I was recently chastised on this blog for not capitalizing the g in “god”. I don’t do that because I don’t want to single out any one religion or god (say the Christian god) as “true”. In case anyone is wondering, I do try to capitalize the C in “Christian” since Christ is title referring to a specific person (almost like a proper name).
http://en.wikipedia.org/wiki/Christ
Thanks to the transcript that codeman38 posted
http://community.livejournal.com/asperger/2415706.html
here is the voodoo reference in context:
I’m assuming that he meant calling on spirits for help, or something similar. Not something like experimenting on the child or demonizing the child (as in an exorcism).
I think that the real epidemic here is narcissistic personality disorder. An entire generation of people seems to be reproducing with the idea that doing so is all about *them*. That’s the epidemic. And I’m dead serious about that. All I see in these parents who post about how autism is the devil (an extraordinarily melodramatic comparison, and how ’bout that RAPE stuff?) is I I I I I me me me me me. My dreams. My embarrassment. My life. My blame shifting. And an apparently complete unawareness of how manifest their narcissism is. Anger. Blame. Self centeredness. Self blindness. It’s all there. It’s all about them, *their* fight, their warrior momness, their anger, their feelings. Ugh.
The thing is, I feel compassion for them and their very real struggles, their difficult lives, their having to struggle with their child’s pain. Huge compassion. But they make it so hard to keep from pitching battle on behalf of their children against that selfishness, children who earn the compassion unalloyed. Wouldn’t their difficult struggle be better if it were soothed with understanding, if the anger could be allowed to dissipate, if vitriol could be left out of it? How is all of this anger helping anything, most of all these children and the adults they will grow to be? Everybody’s so irrationally pissed off–and it’s a waste.
Vaccines are not a cause of autism. Saying it one million times while dancing backwards around the fire, swallowing handfuls of “natural” supplements, and tossing some eye of newt in the air still doesn’t make it so. No one’s autism is “man made” unless someone’s figured out how to implant synthetic neural networks and I haven’t heard about that yet.
Well said, Emily. 🙂
Emily I read your blog, I see a great deal of I,I,I,me,me,me there but then I can understand considering you are suffering great pain and quite possibly severe future limitations, to say the least.
“A cervical spine myelopathy and thoracic cord lesions don’t have other causes than demyelinating disease (i.e., multiple sclerosis).” from Emily’s blog
A ruling from Federal Vaccine Court — that MMR vaccine caused an autism spectrum disorder in a young boy named Bailey Banks — The Vaccine Court’s Special Master Abell ruled that the MMR vaccine produced a side effect in Bailey called acute disseminated encephalomyelitis (ADEM). ADEM is a neurological disorder characterized by inflammation of the brain and spinal cord. The disorder results in damage to the myelin sheath, a fatty coating that insulates nerve fibers in the brain. ADEM can be caused by natural infections, especially from the measles virus. But it also is a recognized post-vaccination injury, especially from vaccines for rabies, pertussis, influenza, and MMR.
Evidence presented to support an MMR-ADEM link was compelling. It included a 1994 report from the Institute of Medicine that said it was biologically plausible for a vaccine to “induce… an autoimmune response… by nonspecific activation of the T cells directed against myelin proteins.”
In fact, both parties in the Banks case agreed “that the IOM has cited demonstrative evidence of a biologically plausible relation between the measles vaccine and demyelinating diseases such as ADEM,” the Court wrote.
Most cases of ADEM (80%) are in children. Symptoms usually appear within a few days to a couple of weeks. They include: headache, delirium, lethargy, seizures, stiff neck, fever, ataxia (incoordination), optic nerve damage, nausea, vomiting, weight loss, irritability and changes in mental status.
Some will argue that Bailey does not have an ASD. They are simply wrong. The diagnosis of PDD-NOS was added to the list of autism spectrum disorders in the 1980s.
I’m tired of hearing how vaccines are safe. Merck themselves filed with VAERS that 3 deaths were caused by their now black-labeled MMRV vaccine ProQuad in November of 2008.
Emily, if you were to find out your own pain and suffering were caused by a vaccine, wouldn’t you be a little angry? If someone told you that eating 2 pounds of carrots would ease some of your pain, wouldn’t you try it? If it worked for you wouldn’t you want others to know?
I’m sorry your life sucks, I’m sorry doctors have such a hard time finding out why you are sick. I’m sure it is just one of those things you want to embrace.
Best of luck.
But he didn’t have PDD-NOS. He had Pervasive Developmental Delay. While all autism is PDD, not all PDD is autism.
The Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR (fourth edition, text revision) the five pervasive developmental disorders (PDD), more often referred to today as autism spectrum disorders (ASD)
Pervasive Developmental Disorders
299.00 Autistic Disorder
299.80 Pervasive Developmental Disorder, Not Otherwise Specified
299.80 Asperger’s Disorder
299.80 Rett’s Disorder
299.10 Childhood Disintegrative Disorder
“The pervasive developmental disorders, or autism spectrum disorders, range from a severe form, called autistic disorder, to a milder form, Asperger syndrome. If a child has symptoms of either of these disorders, but does not meet the specific criteria for either, the diagnosis is called pervasive developmental disorder not otherwise specified (PDD-NOS). Other rare, very severe disorders that are included in the autism spectrum disorders are Rett syndrome and childhood disintegrative disorder.” From the NIH website http://www.nimh.nih.gov/health/publications/autism/complete-index.shtml
From the court hearing transcripts:
Dr. Lopez’s diagnosis appears to conflict with the diagnosis given by Bailey’s pediatrician on 20 May 2004, who saddled Bailey’s condition with the generalized term “autism”; however, that pediatrician later acknowledged that use of the term autism was used merely as a simplification for non-medical school personnel, and that pervasive developmental delay “is the correct [i.e. technical] diagnosis.” Pet Ex. 35.
I hope this clears it up for you.
Bensmyson,
That last comment is beyond the pale. And you should know that it is. Seriously, are you having major personality shifts between posts? You’ll say something halfway reasonable and then come back with something so unbelievably offensive.
Emily writes a lovely blog that focuses very little on the health issues she faces. It is an optimistic blog that focuses on adaptive coping and finding answers to the problems she and her family face. It is not all lightness and she deals honestly with the very real difficulties her children face. For you to do what you did here is beyond nastiness and reflects a meanness of character that has to take readers’ breath away. You really should be ashamed of yourself. I doubt you will be. And I can’t help but wonder at just how nasty a person you are in the real world. Sullivan gave you the benefit of the doubt earlier today, but I will not. I’m not certain compassion is something you are at all familiar with.
Okay, not the last comment; the one to Emily. Went through another personality shift, didn’t you?
For anyone who thinks the Bailey Banks case is definitive proof of vaccines causing autism, consider the title of the decision:
I personally find that decision far from very clear. I don’t know why they use “Pervasive Developmental Delay” rather than “Disorder”. They refer to the DSM-IV at times and to pervasive developmental disorders, so there is no reason to make the confusion. They do note that PDD is used because it is consistent with the child’s records. They note that he has PDD and not autism, but this could be stating
The Court states that PDD is not a diagnosis, but PDD-NOS is. So, why do they continue to use PDD?
His pediatrician put “autism” in his records, but states this is not accurate, but Pervasive Developmental Delay is. Another pediatrician states that he has global developmental delays with autistic features, but not an ASD.
Anyone who calls this a slam-dunk for the court recognizing vaccines cause autism is stretching things quite a bit.
That said, I don’t think the Court is so clear in saying vaccines can’t cause autism. Nor should they. The court is there to take each case and each theory on its own. They have said definitively that the MMR theory of Dr. Wakefield is nonsense (non legal term there). My guess is that thimerosal is about to meet the same fate. Other theories may arise, and the court will consider them as they do.
The chief special master noted that they have granted awards for vaccine injury that includes compensation for conditions that fall under the “broad rubric” of autism. This was before they had a better understanding of autism.
I think also people need to keep in mind that the court is deciding whether autism is a vaccine injury in and of itself. That is, can one say, “my kid showed the first signs of autism 3 weeks after his MMR. Therefore the autism is a vaccine injury”. That is likely never going to happen.
“No one’s autism is “man made”…”
An interesting comment. If autism is not “man-made” then there are only a few possibilities for the epidemic (another thread on this site concluded that only 25% of the increased prevalence from 12 in 1,000 to 1 in 150 was due to alteration of the criteria for diagnosing autism)
1. There have been multiple spontaneous mutations.
2. More of the heterozygotes are procreating with each other.
3. Some as yet unidentified natural immunogen in the environment has reared it`s head and is affecting all of these children increasingly over the past few years after remaining dormant for centuries or that there is a new natural immunogen.
With the rapid changes in man`s development and interference with nature over the past few decades I wouldnt be too sure that the statement “No one’s autism is “man made”…” is true.
Perhaps man`s interference with nature could be the cause.