Alison Tepper Singer and the Rett Girls
Photo:Lucy M. Ricardo and the Spice Girls.
Most people who have a more than a little knowledge about autism and the autism spectrum know about Rett syndrome (aka Rett disorder, Rett's). "Rett disorder" is in the current iteration of the Diagnostic and Statistical Manual (fourth edition), placed there with the other Pervasive Developmental Disorders, though word on the street has it that Rett won't be in the next edition, and neither will Childhood Disintegrative Disorder. Both Rett and CDD are considerably more rare than "PDD,nos," for instance, but perhaps not as rare as most folks think.
Most cases of Rett are caused by the MECP2 gene, though some people have the MECP2 gene and don't have Rett. Men can have the deletion and pass it on, even. Autism Diva knows of a woman who was quite non-verbal until about age 10, she even smeared feces, that favorite pity garnering topic of the mercury parents, "Nothing is worse than having a child with autism THEY SMEAR FECES!! Haven't you heard???!!" The loudest of the mercury parents believe in going right for that primal aversion thing. No holds barred when describing how "offensive" their children can be... Anyway, this woman with Rett syndrome that Autism Diva knows of (it's not Kassiane of Rett Devil blog who also has the MECP2 gene) learned to talk and learned not to smear feces (faith and begorra!) and now she has a daughter who has the MECP2 gene and seems to be following a similar developmental trajectory, but the interesting thing, is that the mom's father has the MECP2 gene, too. Rett syndrome is found almost entirely in girls and the thinking is that the male embryos with the gene usually don't survive to birth.
Rett girls are usually petite and have smallish heads, they can have trouble with eating and they can have trouble with keeping enough weight on, though not always. They have poor circulation in their feet and can have problems with swallowing air. Rett girls can start off seeming more or less normal and "regress" around 18 months old, though sometimes later. They frequently have serious problems with seizures, and frequently lose the ability to walk or to use their hands purposefully. One of the main signs of classic Rett is the need to keep the hands together over the center of the body and there is lots of what is called hand washing or hand wringing. But there's a lot of variability in Rett as you can tell if you look at the following:
A gallery of photos of kids and adults, mostly girls with a Rett syndrome diagnosis on the rettsyndrome.org website,
also here
and here
The following are quotes taken from the Rett syndrome gallery, whre Rett girls are frequently referred to as angels:
Sem M____
This is our silent angel Sem
August 17, 1999
Sem is great, Sem is sweet,
Sem belongs with us, Sem is our everything
Sem has Rett.
So what
Serge & Jolanda M____, Holland"
That might be Autism Diva's favorite quote.
Alyssa D____
"Her smile brightens up even my worst days, and I look at her and think about how lucky I am to have such a special gift that has taught me so much about life and the will to be strong and most importantly UNCONDITIONAL LOVE!" Shannon
Emma D.
Emma lives in Pittsburgh with her mother, father, and baby brother Noah. Emma was born on April 3, 2003 and was diagnosed with Rett Syndrome in November 2004.
Some of the things that Emma loves to do are eat, watch Sesame Street and The Backyardigans, have books read to her, and snuggle.
Emma can not walk or talk, but she has been communicating with us through gestures and occasionally suprises us with a new word!
She is a blessing and lights up any room she goes into. We love every minute that we spend with her and are thankful for every day that we have with her.
Cati Cheri Allison S______
Age 18 (9/22/85-04/19/04)
Cati was sick with sore throat and shut down on us. We brought her home from hospital where she stayed awake to be with us for five days then went peacefully in her sleep. We miss our Cati doodle bug. Ozark Missouri
Cati, her parents' precious "doodle bug," was 18 years old when she died. That's plenty of time to wish that a young woman who some would call a "burden," would die, but Cati's parents did not want her to die.
The next quote is from a different website:
Our children live with constant battles only to end with death often at young age. Kaylie has some days where she is alert and aware, wanting to be in the middle of everything and other days she prefers to be quiet and mellow.
Life with Rett Syndrome is full of ups and down, similar to a roller coaster. Our family tries hard to take the ride and hold on tight but not forget the most important aspect which is LIFE itself. Kaylie goes with us everywhere and we try to expose her to the things in life most 4 year old kids do, however the road is bumpier.
This is an interesting story:
Unlike most girls with Rett Syndrome, Chelsea was highly functioning until the age of eight years old. The evening that Chelsea was born and I held her in my arms, I fell deeply in love for the second time; the first being told I was pregnant. Dreams and aspirations of ballet, piano, sports, slumber parties with her girlfriends, her first boyfriend, graduation, college, marriage and grandchildren were soon to be taken away with no warning.
At the age of three, Chelsea was diagnosed with Autism. She was very hyper, had a short attention span and slightly delayed in her speech. Although diagnosed with Autism, Chelsea talked, attended school with her peers, and was very social and affectionate with others. ...
On December13, 1999, Chelsea experienced her first of many seizures while preparing for bed. After months of assessments and doctors writing her "episodes" off to autism, Chelsea was slipping away day by day. Within six months of her first apparent seizure, Chelsea could no longer walk, talk, eat and lost purposeful use of her hands. Chelsea spent several months in ICU undergoing several tests with no indication as to the invader taking over her tiny body. At the time, all that we knew was that this was not autism.
After a two-month stay in the hospital, Chelsea came home with 24/7 nursing care, a wheelchair, feeding tube, hospital bed and hospice visits twice a week. Doctors told us to prepare for the loss of our precious angel. Just as we were beating the obstacles of the "autistic world" and exceeding the limitations put upon her at the age of three, we were facing another battle that I feared we would lose and lose the most precious gift ever given to my life with the loss of Chelsea. I am the woman I am because of Chelsea.
...
Rett syndrome Frequently Asked Questions
But what about Alison Tepper Singer?
Autism Diva wants to know if the kind of stuff that Ms. Singer said about her autistic daughter would even be conceived of by parents of Rett girls. There may be a parents-of-Rett-kids website somewhere where the parents discuss things like how they have thought about killing their children and themselves because Rett syndrome is just so hard and just not what they had bargained for when they decided to have a child, but from the overview of Rett sites that Autism Diva has seen, it looks like the general theme of parent commentary is, "We love this child! She is a blessing."
Autism Speaks commissioned a video called Autism Every Day to be made for a fundraising gala, presumably to impress upon the potential donors the nightmare that autism is, to cancel out any positive views of autism they may have developed from watching the J-Mac video, to hint at autism being caused by an external agent of some kind, and to send the message, "help us figure out how to stop autism because it may be your child next."
Ms. Singer is senior vice-president of Autism Speaks, the big charity corporation run by Bob Wright of General Electric and the National Broadcasting System (NBC). Ms. Singer apparently has an older brother who is autistic and has 2 girls, one autistic and one apparently normal.
What if Ms Singer's daughter was for some reason diagnosed with Rett syndrome, or the MECP2 mutation, tomorrow?
Would Ms. Singer have to learn to stop the infernal kvetching for the camera and suck it up? Would she ever learn to really appreciate her child in spite of the hardships that might be there? Would she learn that there are hardships everywhere in life and no guarrantees for anyone? Would she cease whining about the career she gave up for her child? Would she apologize to her daughters for helping to create what looks much like an autism-hostile environment in their home?
In the video at the time this still shot was taken Ms Singer is discussing well within ear shot of her daughter, how she at one point thought it would be a good idea to drive her car with herself and her daughter off a bridge, to commit a murder suicide, but says that the reason she didn't kill her autistic daughter was because of the normal daughter back home. Later the "normal" daughter says she wishes she had a sister who didn't have autism. Nice. A perfect sentiment for the video. Miserable to live with if one is the sister "with autism", one assumes.
Autism Diva hopes that Autism Speaks is never able to live down the shame of this video, and must face that shame Every Day.
Autism Diva
Diogenetic
posted by Autism Diva at 1:53 PM
38 Comments:
You know, life hasn't been easy with my son, and there were times when we got depressed. But in retrospect, I realize that it wasn't ever Jared that got me down, but the things that doctors and specialists and books and the internet told me:
Jared would never show me he loved me.
Jared would never have a sense of humor.
Jared would never get married.
Jared didn't even have real feelings.
And you know what? None of that turned out to be true. Jared is the sweetest, kindest, funniest, coolest little boy I've ever known. Jared loves nothing more than tickle fights and prolonged hug sessions. Jared makes jokes (at my expense!) all the time. Jared has been the thing that got me through the depression that he was supposed to be causing.
You know, I almost hope that Ms. Singer's daughter is non-communicative just so that she doesn't have to hear the things that her family is saying about her. But I'd rather that she progressed enough to tell them how badly they've been treating her.
The Diva isn't supposed to make people cry when they are trying to get their morning chores finished.
I think that Allison Tepper Singer is still in the blame phase, and this separates her from those Rett parents, who have passed this stage, and can accept their child. I have seen this video, and it was crushing to see Ms. Singer ignoring her child when her child was kissing her and trying to get her attention.
That video must have been cut down from hundreds of hours of film - specifically to show the tantrums.
Of course staying in the "blame phase" becomes much easier and prolonged when you are helping to run a major organization that's all about staying in that phase.
Ditto Jemaleddin. I am thinking about how many years back that video has taken the general public in autism understanding.
There are parents of people with Rhett's who are more negative about Rhett's. But Rhett's kills people and autism doesn't, and I would guess that the reality of knowing that ones offspring will probably not live to 30 makes parents more thankfull for the time that they do have.
How strange, I just finished writing a blog about that same woman. Didn't know her name until now. Leave it to the Diva to pick up on this first.
If this woman is one of the driving forces behind Autism Speaks, it explains a lot :-(. That was one of the most upsetting, sickening bits of propaganda I've ever seen.
To summarize, uncertainty about causes and prognosis considerably postpones acceptance in parents, who in some cases are so severely affected thay they appear to need a psychiatrist more than their children (as in the case of the mother who was planning a murder/suicide -- I'm not sure if the child was planning a crime as well, but they make it sound as if she was).
Later the "normal" daughter says she wishes she had a sister who didn't have autism.
That line in the video seemed...influenced, to me.
I'm not a master of NT communication. But when the daughter says it, she's sitting in her mom's lap, looking at the mom's legs and the mom is playing with her (the daugher's) hands.
It could be because the little girl is nervous about being on camera or something else entirely. But it still seemed suspicious to me.
I like the juxtaposition of the barbie pictures and title of blog, along with positive Rett pictures and stories, with the downer "latter part" of the post about poor Ms. Singer.
It's artful! (It works on so many levels!)
Jemaleddin, I understand "at your expense". I ask Ben who is he gonna pick on if something ever happens to me!
Thank-you, AD, from the bottom of my heart for this blogpost. I have been so extraordinarily upset with 'Autism Speaks' and Allison Tepper Singer, in particular, that I've had to take a near virtual on-line break after viewing that horrid PSA.
I am beyond speechless that 'Autims Speaks' has set us back thirty years and employs a mother with self-admitted homicidal tendencies as their senior V.P. For Shame ... for utter and absolute shame.
See, I come from a pretty people *grins*.
But seriously...I'm on a mailing list for families and professionals dealing with Rett (there's no 'h', we aren't talking about Scarlette's boyfriend) and all you see is love.
Love and concern. Asking questions about everything from feeding tubes to shoes that work with ankle braces to seizure treatments to reflux to scoliosis surgury to appropriate gifts for the child with little hand use.
And then I see stuff like the Autism Every Day vomit-on-a-screen, and I just want to scream at them "EFFING WAAAA!". Because they don't have it that bad. "But the medical comorbidities..."; they need to see a list of what's associated with Rett sometime. Talk about medical comorbidities. And there is a TRUE REGRESSION (as opposed to a percieved regression) in RS, while whether there is in autism that isnt RS or CDD has yet to be determined.
But the Rett parents love their children. And so many autism parents resent theirs. It's pretty sad.
-the Rettdevil
I love my autistic child. I love him more and more every day. I can't understand what would make a person say they'd kill their child. Many parents have to deal with the ultimate horror - the death of their children, sometimes through an accident, other times by watching them slowly slip away until they are finally at peace. When one decides to have children, one has to throw away the idea of guarantees, because they simply don't exist. Anytime you bring a child into the world, it's a gamble, but a beautiful one.
One of the Rett parents said that the reason she is who she is today is because of her daughter. I have to say that I agree with this 100%. I am a better person today because of my children, especially my older boy, who is autistic. Autism is not the end of the world. Your life completely changes once you get the diagnosis, but you have to get on with life and enjoy it.
Jemaleddin, you are right about specialists, and books, and the internet, and some doctors. Their negativity is the enemy. My son Christian also loves tickle fights, and jokes, and stories and chocolate. He loves his brother and hugs and kisses him every day, even though the little cutie can be a pain to him and pull his hair and steal his toys. He loves animals and numbers and letters. He ROCKS.
In the video at the time this still shot was taken Ms Singer is discussing well within ear shot of her daughter, how she at one point thought it would be a good idea to drive her car with herself and her daughter off a bridge, to commit a murder suicide, but says that the reason she didn't kill her autistic daughter was because of the normal daughter back home.
Remember the old song "Ode to Billie Joe"? When it came out, everyone was wondering just what Billie Joe and his girlfriend (the narrator) threw off the Tallahatchee Bridge before he committed suicide. But Bobbie Gentry, the singer/songwriter, said that she had no idea; rather, the whole point of the song was that afterwards, the narrator's familiy and friends talk about the events in her presence in a remote, detached, non-chalant way as if only strangers had been involved.
Later the "normal" daughter says she wishes she had a sister who didn't have autism. Nice. A perfect sentiment for the video. Miserable to live with if one is the sister "with autism", one assumes.
Well in a very limited sense she's right; if her sister hadn't been autistic, her mother wouldn't have made her whole family's life hell just because she couldn't deal with it. She's identified the problem, just mis-focused on the source.
The people in the video talk about their kids like they're busted appliances still under warranty. "This isn't what I expected? I want a refund!"
I caught myself thinking like that years ago, when Christopher was first diagnosed. I immediately recognized what an awful way that was to think, and cut it out. So I can excuse parents for going through that phase. It's harder to excuse an organization that enables self sabotage, and then milk it for all its worth.
Well in a very limited sense she's right; if her sister hadn't been autistic, her mother wouldn't have made her whole family's life hell just because she couldn't deal with it. She's identified the problem, just mis-focused on the source.
I'm not even sure it would have taken an autistic child to make her mother act like that.
I can't remember the specifics, but I'm remembering a case where a parent really did kill (not just talk about killing) his child, wasn't really convicted of anything because it was assumed this was a "because the child is disabled" thing and the parent "wasn't really a danger"... and then went and killed the child's non-disabled brother too.
And I think there's research about how if a parent reacts in a counterproductive way to the "horrible stress" of having a disabled child, they're going to be someone who reacts this way to lots of kinds of stress, not just that one, and who may have been going to react that way even without a disabled child to blame all the stress on.
Jockey said:
"There are parents of people with Rhett's who are more negative about Rhett's. But Rhett's kills people and autism doesn't, and I would guess that the reality of knowing that ones offspring will probably not live to 30 makes parents more thankfull for the time that they do have."
According to the Rett syndrome .org website, presumably the main web resource for Rett parents, and presumably representing an organization that has been around for a few years... of all the Rett syndrome people that they have been made aware of, only 5% have died. They died of problems related to inability to move, problems related to scoliosis, intestinal problems, problems related to their swallowing air, and a few other things, but if the girl can walk, and doesn't have severe scoliosis, and they monitor these other problems, they can have a normal life span.
So, yes, no doubt they are on their toes constantly from the time of the diagnosis trying to make sure their child stays alive and maybe that gives them the feeling of treasuring the child...
but....
the waaa waaaa sisterhood (it's not just Ms Singer who is eviscerating herself on the horrors of parenting an autistic child):
--"Sure, I'd LOVE to go out for a bagel. In another LIFE."
-- "We wake up like in a frat house..."
-- "We have ALL these pills, and supplements to give..."
-- "All of my friends are autism parents, they are the only ones who understand..."
---"Ohhh, we have NO money now, we are buying up all these cures and we're in debt..."
in the video make a big point about how they worry that their children will run out into traffic. Maybe their big collective fear is that the child will be injured and yet not die? No, they seem to be worried that their child will die.
So why doesn't this fear of the autistic child dying make Autism Every Day moms appreciate their children as it does for parents of kids with Rett syndrome?
Maybe that's not why the parents of Rett children love their children so much, maybe they are just normal parents,
and in stark contrast, we find
there is something
seriously wrong
with the "autism parents" on the video
as well as with the autism parents who support the video.
Those Autism Speaks females do NOT speak for Autism Diva. From the time of the birth of Autism Diva's first child who had serious medical problems the thought of losing that child, or even of being guilty of not taking care of xyr properly, was a nightmare. That feeling of terror eased up a little when the ASD child turned 18, but it's still there.
Autism Diva's ASD child was not sent by God as either a gift or a curse. Genes do their stuff unseen by parents, for the most part, and are entirely random in the way they get shuffled. Nevertheless, Autism Diva's ASD kid is such a wonderful human being, the world would have been cheated in some way had xe not been born. Autism Diva can say the same thing for the mostly NT offspring, they are great kids.
Neither of them would be the kind to get involved with Autism Speaks and bring that kind of shame upon themselves and their mother.
I'd just like to point out that it is entirely possible that Allison Tepper Singer could surprise the masses and become a true advocate for people (children included) with autism in the future.
I heard and Autism Speaks radio spot yesterday and it was pretty bad.
Started out with a little girl thanking her mommy for always protecting her from the dangers of the world, buckling her car seat, and so on.
Then out of left field: But you can't protect your child from autism, 1 in 166, blah blah blah...
It made autism sound like semi going through a red light and crushing your car and your child even though she is secured in a car seat.
Entirely possible, but unlikely.
Once people build up entire big organizations to reinforce their beliefs... it takes a lot to change them. It can be done, and I've seen it happen, but it's harder once you've got all that structure telling you to believe as you do, plus (in their case) the general mood of society (which they'd see as "just how things are") being on their side.
I can only hope that these mothers will have a change of heart when their children get a bit older. Once they figure out how to communicate better, the tantrums will lessen. The love will grow. I don't deny that there is a feeling of "why me" just after diagnosis, but a real, whole, mature human being gets over this eventually. Maybe these mothers just need a bit more maturity? Or maybe they are just not real, whole human beings yet.
A little shallow but I think us parents of kids with disabilities are almost as special as our kids. Why didn't my siblings get blessed with kids like these? Probably because they couldn't handle it. People like AT make my theory go up in smoke.
Great blog! Thanks
Ballatexistenz, I don't disagree with you a bit. I would hesitate to use the word "probable" without evidence that it is (within the context of her role at Autism Weeps).
Alison Tepper Singer and that entire video were horrible. I can't believe that Autism Speaks wants to represent themselves with people like the ones in that clip. Autism is not the hopeless horror show they tried very hard to convince people it to be. There are treatments and education which help people on the spectrum reach their fullest potential and they completely failed to show this.
What a great post. I appreciate your perspective.
I was surprised by how much that video clip bothered me. I was simultenously glad for the insight into the daily challenges that the girls and I faced for the first three - four years of their lives and repulsed by the hopelessness and "pity me" gist of it too.
I can't speak for anyone else and I certainly do not blame the girls for this, but when they were little and tag-teaming me with the endless tantruming all day and most of the night, and I was exhausted, and the only people in my life were blaming me for what was going on or blowing off my tenative concerns with, "Oh, all kids do this," I would have been really thankful to know that I was not a huge f-up and that my kids were not defective and unreachable. That there was an explanation for all the screaming and self-injury and there were things I ould do to make our lives more manageable And that, in fact, all kids did not do what the girls were doing.
On the other hand, from where we are now, the hopeless, helpless, victim angle really bothered me. Until I read your post, and many of the subsequent comments, I had been unable to put my finger on just exactly what bothered me so very much. It paints an entirely incomplete picture of autism, or life on the spectrum in our little corner of dysfunction junction anyway. Whenever the joyful, the unique, and even the mundane experiences of life on the spectrum are left out, it does a huge diservice to my children (I am trying to be careful not to genrealize as to anyone else's experiences) and to society. It cheapens the contributions of people who are on the spectrum and it asks so little of the communities that they live in.
Thanks Autism Diva and those who have commented for articulating for me what was just beyond my reach, expressively.
Thanks, Suddenly Susan.
It's not that autistic children should never be filmed having a meltdown, but people have to think about it, just having a camera crew or strange cameraman in their own bedroom might be enough to cause a kid to have a meltdown.
One of the huge problems is a lack of the right kind of support, parents shouldn't have to go basically without sleep for days on end, that's not good for anyone. Autism Diva's autistic child still doesn't sleep normally and was awake alot at night, but that kid stayed in bed, except for the times when xe got in bed with me and then xe was quiet.
There should be more understanding of autistic kids yelling or flapping in public, but that's what autistic adults are trying to create for your children, "space" to be autistic in public.
All of this pure negativity is going to backfire badly on the parents of autistic kids, and autistic people in general.
Something occurred to me, thinking about this.
Many Rett girls have PRONOUNCED normal to precocious early development. Then they regress, often very quickly, and often in health, not just developmentally. Severe seizures may start, food suddenly stops sticking (if she'll eat), etc. The onset can be rapid. Like, within 24-48 hours. I distinctly remember at the age of 3 or 4 the baby scissors and crayons suddenly not being the same as they were the day before, and I'm very mild phenotype.
So. Many parents of girls with full syndrome Rett went through a time VERY EARLY ON that they were positively terrified that their little girl was going to die. After you fear for one's child's life when they are very young, I'd imagine there's a bit more appreciation for whoever their child ends up being.
In autism...well...I don't know that I buy into regressive autism that isn't CDD (which, like Rett, may be underdiagnosed because of the narrow phenotype denotated in the DSM). Do i beleive in developmental arrest? Yes. Do I believe in losing skills? Certainly. But I don't believe in "my child was normal and then they got their shot and 3 days later they lost 100 words and banged holes in our walls with his head". I think that parents are easily suggestable and other parents insisting on this, wishing it to be so even so theres an agent to blame.
Anyway. Since most autistic kids are fairly healthy, there's generally not the "oh my god my child is going to die" effect. Having a physically developing, healthy child who, well, who is autistic, I guess doesn't incite enough fear for appreciation.
Not all parents need this fear, clearly, but I'd not be surprised if it was part of the problem. That and the nagging memory that no, there was no regression, lying for money lying for money lying for money.
There is a big difference between the average parent of a Rett child/adult and the average parent of an autistic. From what Autism Diva has read, almost all Rett cases pop up from de novo mutations. Or is that just what they think because they aren't looking for the MECP2 gene carefully enough?
The majority -- but not all -- parents of autistic kids are autistic, BAP, bipolar, OCD or unipolar depressive. Autism Diva thinks that especially tendencies toward OCD and bipolar are seen in some of the more vocal parents. Autism Diva thinks that there is a huge silent minority of parents of autistic kids who are coping OK and not thinking that their lives are too horrific for words.
There may be something in the fact that the majority of non-verbal, seemingly regressed or seemingly retarded autistics are male and the majority of Rett's people are female. There may be a greater tendency to feel extra responsible for little girls than boys. Someone must have a study or two on that somewhere.
Part of the drive to do this self-eviscerating is so that the mercury lawsuit parents can throw this in the face of the judges they will face. "EVERYONE KNOWS HOW HORRIFIC AND DEMONIC THESE FECES SMEARING BEASTS, uh, CHILDREN, ARE!!! ONLY THE CDC AND BIG PHARMA COULD DO THIS KIND OF DAMAGE TO MY PRECIOUS NORMAL BABY!!!"
And yes, in the US there is a known percentage of people who are sociopaths, 4% isn't it? and a known kind of people who will gladly lie or sell their grandmothers for money, like the people who "accidently" fall down in Walmart and sue for slipping on "something."
The thimerosal causes autism accusation is right below the surface of this movie. Katie Wright is the daughter of Bob Wright and she's the blonde with the little blonde boy who says that it's just awful what was taken from her son. She can't get him into the ivy-covered pre-school she had planned for him as grandson to a mogul. She's already stated on Imus that she thinks he was poisoned by vaccines. The glossy magazine life she may have had all planned for him was "taken from" her and her husband and the grandparents who say, "autism knocked on the wrong door." As if they are too fine for autism and now they will pound it to a bloody pulp and kick it out the servant's entrance.
Is there a PECS card that stands for "Hello! I'm standing right here! I can hear you!"
Hi AD
I wonder if you can be interested on my personal experience about what I was told, what I did about and my interpretation on this. I do not want to bother you in your blog about my opinion.
If not interested, sorry if I disturbed you.
María Luján
Thanks for the update on the bad press, AD. Sometimes it's not so bad to be so isolated. Instead of this crap, for instance, the only two things I have recently (and voluntarily) been exposed to are the May 15 Time Magazine article on Autism, and Stanley "Floortime" Greenpsan's brand new book "Engaging Autism". Both are pretty positive views of autism. Especially in comparison with Autism Speaks stuff.
This kid being sick stuff makes a lot of sense. Small boy was pretty sick when he was born. After that, autism isnt at all shocking. The two simply dont compare.
I adore my autistic child. She is wonderfully unique, eccentric, often strange, but in a "strange and wonderous" kind of way, a way I find both fascinating and endearing.
Other people who know my autistic child find her endearing, as well. They come to love her pretty quickly. She's lovable. She's adorable, and she's loved and adored.
I cannot understand parents who think of their children as monsters. My parents did this to me and I'm not even autistic. They did a huge amount of damage to me with their constant negativity and their spoken and unspoken message that I was not good enough, that I was not right.
Now take a disabled child and put that on them. Your parents think you're a monster. Your parents wish you were someone else. Your parents say they love you, but then they subject you to painful and often untested "treatments" that you can't understand. And they constantly tell people what a burden you are, how hard you make their lives, and how they wish you were "normal".
My parents were bad enough, but doing that to a disabled child who has difficulty with relationships anyway should be a criminal offence. I sincerely hope that the karma these parents are generating for themselves with their hatefulness and cruelty is repaid with interest.
I noticed two things in the video. One was the production; the editing (carefully cut to show just the screaming, the "behaviors", etc.), the cinematography, the background music, and especially the subliminals. Notice how the mother and child just HAPPEN to be standing in front of the "DEAD END" sign -- and later they show the sign again.
The other was the child sitting on Mommy's lap reciting the words "I wish I had a sister without autism." She was looking at someone offcamera, and her tone of voice was recitative. These things told me very clearly that someone had just directed her to say those words.
Everything about this video
delivers the message that autism is not just a problem but a horror-movie curse. But if so, it is a manufactured curse. The video is its own self-fulfilling prophecy.
For one thing, it will send the wrong message to parents of autistic children who do not act like the ones in the video; "well, my child doesn't act like that so he's not autistic". So they might not look for special services, which means yes, no ABA or institutionalization or stupid mercury "cures", but also no appropriate services like an education plan that focused around their child's individual needs and special interests.
Seen this? There is more to this story than we are being told.
Jay Young
anne: Yes, there is. Or something similar.
http://www.aacsafeguarding.ca/CD-medical_examination_2.htm
...to cancel out any positive views of autism they may have developed from watching the J-Mac video...
Sigh. J-Mac is a local boy & last week I saw a display in the grocery store (of all places) of t-shirts commemorating J-Mac's big moment, with his picture, the date, the stats... & a big "Fight Autism" logo at the bottom. I was appalled & am still trying to sort out how to respond, in light of my very different approach & attitude toward raising a son with AS, OCD, & Tourettes (fight? try LOVE!). So much for the positive views of J-Mac, though... :( :S
I came upon this blog while doing google search to find reaction to the news of Cure Autism Now merging with Autism Speaks.
As the parent to two kids on the spectrum we have been involved with AGRE through CAN for many years and now I am thinking of contacting them to cancel our association and stop using our information for research.
I was appalled by the words of Suzanne Wright when she was on The View in Jan of this year and it was repeated in March.
Two key points she made -
this is a community of heartbreak and sorrow.
.... then we got this terrible diagnosis.
Thanks for all these commenters stating what I feel and glad to know there are others that are disgusted with this organization.
http://autismfamilies.gather.com
http://autismspectrumdisorders.bellaonline.com
My non-autistic daughters have gone through feces-smearing phases, and you know what? It's gross, but it's not the worst thing in the world. I still love them (and thankfully they outgrew those phases).
I feel so sorry for Ms. Singer's daughter. I wish she could be in a family where she could be loved and appreciated for the special person she undoubtedly is.
TDH-
YOU DON'T MEAN those two adorable girls in the music video? :-)
They really are sweet.
Thanks for your comment.
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