Via Kristina and Ballastexistenz I found out a few more facts about the ‘Autism Every Day’ film.
I, amongst others, was highly critical of the film for two reasons. Firstly, its highly provocative title claims that it shows the daily reality of living with an autistic person. Secondly, the jaw dropping bleating of a mother who told how she contemplated murder/suicide because of her life with the hell of autism.
Now, an interview with the filmmaker, one Lauren Thierry, has revealed the calculatedly misleading nature of the film and the lengths Thierry went to ensure the film got the ‘harrowing’ footage needed.
The party line is supposed to be that anything that raises awareness you’re supposed to be happy about. That notion is 10 years old. At this point we need to be showing the world what the vast reality truly is.” She says that reality includes images of kids not sleeping through the night, banging their heads against the wall or running into traffic — not images of kids setting basketball records or passionately playing the violin.
This is not accuracy. This is a calculated agenda. Of _course_ kids not sleeping through the night or banging their heads against walls, or running into traffic are realities. No one disputes that. But Autism Every Day (and Thierry) in the above quote are explicitly excluding images of kids setting basketball records or playing the violin. Those are _also_ realities. I showed another reality at the end of my original post – that of my beautiful daughter grinning from ear to ear as she bounced on her trampoline.
You are not ‘showing the world what the reality truly is’ Mr/Ms Thierry. You are, by your own admission, deliberately excluding anything not capable of inducing pity.
And what about the events that the filmmakers _did_ record? If you’re going to deliberately, consciously exclude the varied reality of autistic life then surely it behooves you to at least present the material you _do_ choose to show accurately?
Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work.
Yet again, this is _not_ accuracy, this is a premeditated attempt to wilfully misrepresent people. As Ballastexistenz says in her post:
This was, as expected, not really a “slice of everyday life†from these parents’ lives, but a deliberately engineered take on the worst they could make things look.
You have to wonder at the motives. Why would someone who claims to be an autism advocate deliberately create and release a deliberately inaccurate film?
But it gets worse.
The majority of the harsh criticism surrounding the film is directed at Alison Tepper Singer, a mom featured in the film and a staff member of Autism Speaks. About midway through the film, Singer discusses her reaction to inadequate classrooms. “I remember that was a scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools.” It was only because of her other child, she said, that she didn’t do it.
Both autistic and typical families have reacted with outrage and disgust to Singer’s statement — calling for her children to be removed from her custody and even drawing a connection between her and Karen McCarron. Thierry responds by calling Singer “gutsy and courageous.” She was expecting a call from Singer asking that the footage not be used. But that call never came. “You don’t say stuff like that — camera rolling — unless you are truly ready to play ball with the entire world,” Thierry says.
If most mothers of autistic children, Thierry responds, look hard enough within themselves they will find that they have played out a similar scenario in their minds. “If this is not your reality, then God bless you,” she says.
What in God’s name is going _on_ here? How can someone be described as gutsy and courageous for contemplating murdering their disabled child and then being stopped by the thought of their non-disabled child? Memo to Thierry: that’s not courage or guts. For you to paint it as such is frighteningly irresponsible. If anyone who parents both a disabled and non-disabled child feels it _is_ gutsy then do the same thing – get both kids in a room, tell someone you were thinking of killing the disabled one but because of your other child you won’t. If you feel gutsy or courageous after telling your disabled child its OK to kill them but its not OK to kill their non disabled child then God bless you. Because you need it.
Left Brain Right Brain 
Thierry is doing what countless others do in the name of some purported “greater good:” justifying horrible means. It stinks. The thing that struck me, aside from her blithering rationalizing, was that the footage of the kids, if you really look at it, did not actually portray them as so terrible. One girl is shown crying or whining in the car — don’t all kids do that? Other kids are shown, in my eye, being kids, but being caught in the context of “Autism, the beast that steals our kids.” If you were to watch this footage without sound, you’d probably think: family life, so what? next!
The most striking thing for me in this film was that every child shown is so affectionate with their mothers but it is as if the mothers don’t really see it, in their misery. Singer is the most blatant example here. I’m sure her daughters (both) can understand what she’s saying. One of them is autistic, but not deaf, I believe. How does this statement from her mother make her feel?
Susan Senator, thank you for your observation;
“The most striking thing for me in this film was that every child shown is so affectionate with their mothers but it is as if the mothers don’t really see it, in their misery.â€
That absence struck me as well. Clearly, affection was not on the menu the day they made that film. Grim was the only message they wanted to portray.
If someone were to show up at my home and film me before the shower, shave and hair comb routine in the morning, I am sure the popularity of being a grandparent would hit bottom.
But why do that? Autism is described as a spectrum, why can’t it be shown as a spectrum?
Susan, I echo Mike’s thanks. You’re absolutely right. The ‘hell’ of autism seems to be unpopulated by autistic people.
Mike, I think that the answer to your last question lies in both the Western pre-occupation for sound bites rather than close examination and the underlying aim of this particular piece. From what I’ve heard, its used to separate corporate sponsors from their allocated sponsorship money and the best way to do that is to tug at the emotions. All very cynically done.
By the way, I’ve had word from my parents that they never once had thoughts like that. Not that I needed to be told, but they seemed to want to make it explicit. And we had very difficult times at certain points in my life, including times at which my mother was blamed for me being autistic, at which I was almost taken away from my parents by force and officially deemed to have no legitimate future, and at which I was given to running out of the house at night and hurting anyone who got in my way, and so forth. My parents had very little outside support and some of my relatives were even quite explicit about their non-support. I was a lot older than the children in that film when this was going on.
I don’t think that even showing someone like I was should be done in a way that elicits pity, disrespect, curebie sentiments, and declarations of murderous intent. (Given that I even experienced attempted murder, that murderous intent, and justifying of same by “severity” talk, is way too close to home for me to sit around encouraging it. If it’s discussed at all by people who feel it, there are far more responsible ways than just putting it out there as the natural consequence of having a child like me.)
I spent years in abject terror that my seriously handicapped ASD child might die. I was distraught at the thought of losing him/her. I thank God that s/he didn’t die. I’d have had the same terror of losing my normal child (I have one of each).
I was terribly depressed years and years ago and thought about killing myself, in a sort of vague way, without making a plan. I thought about “taking my kids with me” so they wouldn’t suffer without a mom. I thought that way for a few minutes and threw that thinking away. Notice, I didn’t decide not to kill myself for the sake of my normal child.
I was not depressed because I had a handicapped child, by the way. That was not the problem, though the handicapped child had loads of complicated problems and I was a single mother with very little money and very few options.
Lauren Thierry has a warped view on the world as do the folks at “Autism Speaks” including Alison Tepper Singer. They are a bunch of spoiled sickos with money.
Kev… “why lie?”
Because the world is so two faced that it will countenance that sort of shit. It’s a very fucking sick world.
Appalled: ” They are a bunch of spoiled sickos with money.”
My thoughts exactly.
I just tried to watch the Autism Every Day and I just couldn’t finish watching it. What a whine fest!!
Imagine if you made the same film with typical kids. A Mom saying, “I just can’t talk on the phone, she wants my attention all the time.” about a typical child. What would the response be?
There’s a place and a time for communing with other parents, those of typical children and those of autistic children, and discussing the difficulties and triumphs. It can be helpful to realize that you are not alone in your struggles. However, making a movie, to raise funds or otherwise, based upon some kind of huge pity party is sick. Letting pity and grief take over your life will only harm you, your family, and your children.
Bob Wright has gone totally ’round the bend; he should resign from his network position as he has used his corporate position as a platform for his unsound views. The Wright family should be ashamed of their behavior and that of their cronies (Tepper Singer former tv exec; Thierry & Watkins tv ‘personalities’). I wonder what the other board members of NBC Universal think of him and his disgraceful “Autism Speaks” organization? You know what I really wonder: What does Dick Ebersol think??
We should all buy some NBC stock and show up at the next shareholder meeting and tell them what WE think.
Unfortunately, whining about one’s circumstances seems to have become something of an American pasttime. I can’t speak for other countries in the Western world (perhaps some of the Europeans here will chime in) but we Americans seem to have no conception of what daily existence is like for the majority of people in the rest of the world. If having an autistic child is the worst thing (and I personally consider my son to be one of the two best things in my life) that ever happens to me I will count myself among one of the luckiest people ever to walk the face of the earth. My advice to the Autism Speaks parents and supporters is very simple- “Grow the hell up!”
To Gabesmom: Regrettably, whining is a cross-cultural phenomenon in the Western world. There seems to be a belief that the world should be “fair” – and, if it is not, then the “victims” deserve compensation and an apology.
For better or worse, I was brought up in a world where bad things happened to good people for no particular reason at all; where blaming others for one’s own misfortunes did not solve the problem; where “fate” had no interest in how much it ruined your life’s plans. In other words, this world.
I have not considered murdering my disabled child, nor has their disability driven me to contemplate suicide. I would be completely crushed if any of my children died or were taken from me. And I do not think that I am in the minority in this.
Clearly, there are parents whose coping skills have been overwhelmed by their child’s disability – these people often end up on the police records and occasionally on the telly. However, I hasten to add that they are in the minority.
One thing that people running the so-called “autism advocacy” groups (like SafeMinds, Generation Rescue, NAA, ASA and DAN!) should seriously consider is that they are increasing the burden on the parents of autistic children through their unceasing rhetoric of doom and disaster. Even the best of parents will be hard-pressed to keep their spirits up after hearing – over and over – that their child is a “train wreck”, that their life is “a living hell” or “a parent’s worst nightmare” and that their child’s life is “worse than death”.
If groups like Generation Rescue and the rest want to do some real rescuing, they could try to be supportive, to interect a little objectivity – point out that an autistic child’s present performance is no guide to their eventual functional ability. Or even that autistic children can be (and quite often are) affectionate and happy. Oh, and that there is no excuse for killing them – either by suffocating them or by taking them to a quack for irrational medical “therapies”.
No, I’ve never thought of killing my disabled child – but I have occasionally though about killing those who go out of their way to make life harder for parents of disabled children.
Prometheus
Holy crap! Parenting is hard. Period. There are bad days. This is true regardless of what sorts of kids you end up with. Different is not worse. It’s just — different!
(Don’t fall over in shock, but the rest of my reply got way long, so I blogged about trials and tribulations.)
andrea
PS the trampoline is a big hit at our house, too!
I’m bothered more and more.
Not, of course, by being the mother of an autistic child, my best boy, Charlie.
By that video.
As you know, my kids are NT. I bet I could make a video of NT families just as unbalanced and harrowing given Lauren Thierry’s mendacious methods. NT kids don’t have screaming meltdowns? You shoulda been at my house the other day when JumperGirl hit the wall. And she’s 17. Parents of NT kids don’t fantasize? We used to call the hour before dinner “the arsenic hour”.
Maybe somebody should make a rebuttal video — with NT kids and families. Only not with the death threats, because as you say, it is sick.
I like what mom-nos wrote about the Thierry comments. Perfect.
http://momnos.blogspot.com/2006/07/alternate-view-of-autism-every-day.html
Maybe somebody should make a rebuttal video—with NT kids and families.
Somebody should make a similar video with deaf, blind or other disabled kids, and see if what was said in those videos makes any sense in those contexts.
Hi —
I came across the video Autism Every Day and cried because I could relate so well but yet I could not. I have a daughter who has sensory problems and I had to quit my job as an attorney to care for her because no one else could . You can read my full story here —
http://forums.about.com/n/pfx/forum.aspx?nav=messages&tsn=1&tid=2430&webtag=ab-specialchild
The Chicago Tribune ran a story on her on July 4, 2006 — http://www.chicagotribune.com/entertainment/chi-0607040196jul04,1,4767917.story and Sensory Integration and my business Custom Weighted Vests ( http://www.customweightedvests.com) was covered on Chicago Talk Radio where I was interviewed.
What I was hoping you could help me with was putting me into contact with someone who could and would do a story on Sensory Integration Dysfunction (SID). I really feel that it is important and necessary to have more coverage on Sensory problems that are ever so prevalent in many disorders but yet so little is understood about it from the general public. My husband and I are both attorneys and yet we had never heard of SID. We had taken our daughter to the best doctors and hospitals (University of Chicago) we could to have her evaluated and diagnosed but yet it took us nearly 1 year to get the SID diagnosis and 1 year to get her effective treatment. We continued to question if she only has SID and not something else but she receives therapy — OT, Speech and sees a social worker.
I look forward to hearing from you and thank you in advance for your help.
Jill Daniels
Any parents with a typical 2 or 3 year old has experienced their share of hard, challenging days. Should we make a video about them to elicit sympathy? Should we praise the parent who contemplates killing their kids but stops before they do the deed?
This video is no better to me than the quacky “before” and “after” videos of cured kids floating around. You know, where they find the 3-year-old throwing a tantrum as the before scene and a 5-year-old playing nicely as the after? As if that somehow proves their point?
Parenting is hard. Parenting an autistic child is considerably harder, I’d imagine. But that point can be made honestly without these kinds of machinations.
You know what?
LIFE is hard.
I just had a temper tantrum (complete with yelling, screaming, and stomping feet) because someone came into my office over the weekend and moved my fan, so I couldn’t find it. It was in another room. But my office has two doors, and both of them are locked at all times, so nobody should’ve even been IN my office over the weekend.
Of course, I’m in the middle of some emotional stress at the moment, too, so that made my anxiety threshold much lower than normal…
The point is, life is hard. Suck it up and deal with it.
And sure, have temper tantrums once in a while. They help.
Liz wrote: “Maybe somebody should make a rebuttal video—with NT kids and families.”
I think they have: The show Nanny 911. Only, within the space of 1 hour, the Nanny magically erases the dysfunction and everyone lives happily ever after. The message is that even in NT families with the most severe behavioral problems (I’ve seen some pretty unbelieveable meltdowns on the show, including one kid ripping up an entire house), these behaviors are easily fixable with some consistency and stars for good behavior. The Nanny never comes back a month, two months, a year later to see if the family has remained “stable,” so the viewer (well, not every viewer) is manipulated into thinking that anyone with a good bag of tricks can fix an NT family.
The inverse is true with this Autism Every Day video. The droning message it that nothing will work, it will never get better, and were it not for the other NT child the only remedy would be driving off the George Washington Bridge.
I remember that the word “never” was in fact used. One mother said she will NEVER walk her son down the aisle on his wedding day.
Never! Really?! I think that comment insulted me almost as much as the “I thought about killing her” comment. There is just too much information on autism, by autistics, these days for parents to continue perpetuating the myth that any autistic child will “never” do X.
“Alison has both a daughter and an older brother with autism, giving her long-term, personal experience with the disorder.” (This from the autismspeaks.org site)…
And so, I wonder: Did Alison Tepper’s mother ever feel like driving her son off a bridge?
I am the mother of a 5 year old with autism. Please do not judge what you do not understand.Everyday with my son is a journey in itself. Something as simple as going to pickup a few groceries is indeed a task.Although not as stressful as it used to be he has gotten better in that situation. As long as you go to the same store ,Etc.
Suzanne – I (and many of the other people who comment here) are also parents of young autistic children. I understand very well but I do not agree with dishonesty and manipulation to present a case.
I thought Lauren Thierry’s film was honest and accurate. I fail to comprehend the criticism presented here. To portray Autism as anything less than stressful, no matter what the unique joys, is to engage in denial.
Thierry’s film portrayed autism as a reason to contemplate committing pedocide. THAT is one reason why it’s receiving criticism here.
Sharon I’d respectfully ask you to think about whether its a good idea to discuss the murder of your child and your own suicide whilst your child is in the room with you.
I’d also like to ask you if you think its acceptable to purposefully show *only* the negative side of parenting an autistic child and then describe that film as ‘autism every day’? Surely your whole day is not unremmitingly negative? I know mine isn’t.
Nobody is saying that parenting a child with special needs isn’t stressful. I’m not sure where you got that idea from. However, its true that parenting in general is pretty stressful and its also true that parenting a special needs child is not _always_ stressful.
I would personally hjave no issue with a well balanced, informative film rather than this which is admittedly misleading and which, as mcguffin says, seems to imply that killing one’s kids is a cause for sympathy and understanding.
YOu know be a SINGLE parent of an austiic cihld. Girls are worse than boys. I do not know a parent that has not once thought about wanting to die with their autistic child. I knew peole with 3 and 4 autistic kids. You walk in our shoes. Not all are mild many are severly mentally retarded. SOme states have little or no services for respite. You cannot work you cannot have a roof over your head.
The film is an accurate portrayal of hard core autism. What we all had rain man for kids and Jmac. I have yet to see one.
My child goes to a special ed school and i have seen her in reg ed schools and various forms of autism and disabilites. Most are severe, some become blind, have seziures and various other medical problems The divorce rate is high.
PS to all not all states and services and insurance and nations are the same. I have lived in 3 states, two nations.
All of you who say the nbc head is wrong you are wrong. My child is 21 years old. Been at this since about 18 months. Let us talk again when your child is an adult or hits puberty or you move to a state that has been sued for lack of services.
You all need a wake up call.
BTW autism is not an American issues. Canada is in in 105 people being dx, the middle east, bahrain is starting a huge research project our own govt just started at the request of drs who have seen a 10x increas in autism, ocd, adhd, bipolar and btw many autistic kids develop in adult.
bahrain is spending millions to find out why they and india and china have the same darn massive autistm increase. 15 yrs there was no books, no info. no experts now all of a sudden so many of you claim you are or know one. HAHA!
so, who is going to look after all the kids with autism when you are all dead and gone?
i should have written a book but i have been busy trying to survive.
Here is a hint in Ont Canada you get more disability payments over 1000 in most cases in home homemakers services. Most states have long waiting list for such help.
Calif guarantees services via the constitution.
How is autism a bless unless your kid is so drugged out? How is it a blessing when your child will not get out of car so you can go buy food or go to a dr appt?
Those who say it is a blessing must have lots of help and family. Many do not.
_”YOu know be a SINGLE parent of an austiic cihld. Girls are worse than boys. I do not know a parent that has not once thought about wanting to die with their autistic child. I knew peole with 3 and 4 autistic kids. You walk in our shoes. Not all are mild many are severly mentally retarded. SOme states have little or no services for respite. You cannot work you cannot have a roof over your head.”_
I’m thinking this must be a joke comment.
Cat – I’m not a single parent but I do have a daughter who is autistic. I have never once thought about wanting to die with my child. What’s all this ‘walk in our shoes’ nonsense? What’s this ‘hardcore autism’ nonsense? Are you yet another who wants pity instead of help?
I didn’t see Alison Singer with more than one autistic child? What’s her excuse? I didn’t see any child in that film who was ‘worse’ then mine. Good grief, this isn’t a competition.
This film was dishonest – wilfully so.
As for your second comment – so now we have to be single parents with adult autistic children? Guess what? Still wrong to kill your kids Cat.
I’m not American. I’m British by the way. I know full well the lack of support lots of people get. We’re on the receiving end of that too.
We have one family member who helps us.
Get off your high horse Cat. Your situation is nothing special. You’re right that its damn difficult. Very damn difficult, but you know, the only times I have to bring that up is around people like you who seem to feel you have it harder than anyone else. You don’t. Despite the hardships life sometimes throws at us, my daughter is who she is and that’s why I love her.
Are you saying that you have never once seen anything other than misery associated with your kids?
Autism Every Day on ABC’s Good Morning America today.
After seeing “Autism Every Day” I thought “finally, someone is telling about the other end of the spectrum! Seeing only the higher functioning kids on t.v.is not going to help fund research for a cause or cure nor is going to help the government realize that families inflicted by this need help with getting some needed services through health insurance.
My seven year old son is non verbal, still in diapers and has meltdowns along with bolting. These are EVERYDAY realities. I don’t see many parents carrying their 7 year old kids over their shoulders just to get them on a school bus everyday while their kid is biting their arms. It’s not too easy changing the diaper of a 7 yearold much less get a babysitter willing to do it.
Because my son has no regard for safety we have our back yard fenced in, our front yard fenced in, a service dog and a tracking system around his ankle…. all out of pocket expenses wihout any financial assistance.
I don’t know why anyone with a child with autism would criticize this film. You should know that every child with autism is different. We should be working together and not against each other.
Sorry Kim but I’m getting fed up with saying the same thing over and over again. However, once more just for you.
Yes, they are realities. But they are not the only realities. This is nothing to do with HFA vs LFA (a meaningless distinction anyway) this is to do with an autism organisation that claims to be showing _the_ reality – I take issue with that. I do not want to see my child misrepresented. I further do not want to present to the world the idea that its OK to consider killing one’s kids. or that its something parents of autistic kids routinely think about.
I think this segment was the first that I’ve seen with a glimpse of reality into the families of children with autism. I myself have a 12 year old son of a severely autistic child. Everyday is a challenge. He is self injurous, destroys property left and right (I’m talking hundreds of holes in walls, solid core doors being ripped off, etc). This is just a brief sample. He is bigger than I am and sometimes I am the victim, getting hurt in the process. I’m terrified to take him anywhere since he can overpower me at will. Yes, the segment did not show all the joys of those with exceptions – but its just that exceptions.
I recently watched the video “Autism Everyday.” Yes, I can relate with most of it. I also have two “typical” children and a child with autism. Yes, there is a difference between typical and autistic children. My two typical children can speak, my autistic son cannot. My son has been in therapy for 5 years and still cannot tell me when he is hungry, when he is upset, what toy he wants for his birthday, and so forth. My son cannot play baseball with his father nor can he ride a bike. My son just started to have tandrums that I cannot comfort him – he is banging his head against the wall which he has never done before. My son is trying to learn to potty train at 7 years old and still is wearing pull-ups. There are days he has taken his bowel movement and wipe it everywhere on him or the walls. My son will have meltdowns in the car and start banging his head on the window or the seat. There are days he cries and I have no idea why. My son will probably need supervision for the rest of his life.
Unfortunately, some people chose not to open there eyes and see what reality some of us are chosen with –
C’mon folks, what’s a little pity party compared to years and years of putting up with it?? You’re just envious that you can’t make a “poor-me” film and get it televised nationally.
edited so I don’t get sued – Kev.
Kev,
I’m guessing this is one of Mr. Watkin’s “other women” (jilted maybe? angry ‘coz he wouldn’t leave Lauren maybe?) and not actually Lauren Thierry herself…
Interesting insights, though, if it’s true. Fits the whole whiners flock together thing going on at AS.
Some of us could actually make films [can or do] but would never stoop to a “poor-me” flick because (a) we don’t feel that way and (b) it would be an insult to our beloved children. So, nope, not feeling any envy toward Lauren and Alison — more like absolute disgust.