Staying Afloat
Autism Community Mourns Passing of Jo Pike

This Should Be Autism Speaks's New Ad

By Kim Stagliano

Dear Autism Speaks and BBDO, this is autism for the vast majority of us. It's not missing out on a career with the Yankees. Most boys will never play MLB autism or not. It's not just a kid morphing into an autism Dad in an ad that could be selling Subarus through the generations. It's a beautiful 15 year old girl standing in the infant toy aisle at Target, transfixed. It's the pain of a stopped clock.

Surely you know that?

This Should Be Autism Speaks's New Ad 


Kim Stagliano is Managing Editor of Age of Autism. Her book from Skyhorse Publishing, All I Can Handle I'm No Mother Teresa; A Life Raising Three Daughters with Autism is available now for preorder and debuts November 1st. Contact her at kimstagliano@gmail.com to schedule a Skype book club or in-person appearance this holiday season. Visit her website at www.kimstagliano.com.

Comments

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Carolyn M

dszy -

A "stopped clock" may be able to be restarted, depending on what caused the clock to stop in the first place.

Many of us are trying not just to "re-start" the clock, but to do what we can in order to "re-set" it, to the "correct time" if at all possible.

I agree with "thank you kim" that Kim's metaphor did not imply death.

Mark Blaxill

"I'm praying that this beautiful girl finds this post on the internet someday and asks her mom all about it."

Right on sister!

thank you kim

dszy,
Kim did not call her daughter "a stopped clock." She called autism "the pain of a stopped clock." "It" referred to "autism" throughout that paragraph.
I don't see how you read death into the stopped clock metaphor. To the rest of us, it symbolized her daughter's neurological development coming to a halt, not her life.

Receptive language should not be a concern since Kim's post is written, not spoken. I think you have to give parents a little more credit than to assume that something they've written to other adults online they will say out loud to their disabled children.

As for the possibility of her daughter coming across this post someday and being upset by it, I would think that if she progresses to the point that she can search the internet, find an article written by her mother about her in the AoA archives and understand the "stopped clock" metaphor, the Staglianos will have much to celebrate. Explaining to her daughter where she was at age 15 and how far she's come will be the least of Kim's worries.

I'm praying that this beautiful girl finds this post on the internet someday and asks her mom all about it.

dszy

That's a poetic post, but to me "stopped clock" sounds like death, and a teenager who likes baby things is atypical, but not dead. For a parent facing the reality of her child's disability, there is a death to contend with: the death of the idea of the kid they thought they were going to get. The person in that photo, however, is more than an idea, she's a person & she's alive. Apparently she is pretty different from many kids her own age but I wonder how she would feel if she heard her mother say that she is a "stopped clock". Maybe she has heard that, maybe she understands what it means & maybe not. But, everyone on this list should know that when you're talking about kids with autism, making assumptions about receptive language is a risky endeavor. I understand that people are in pain here, but when you make public statements about your children, you should assume that information will eventually get back to them. Information in print stays available for a long time these days, and most of these young people will continue to learn & improve their language skills for many, many years. My advice is not to say anything about your kids that you wouldn't say to their faces.

Stagmom

I know the sign for drowning is a hand sticking up out of the water or a choking, water logged "HELP!" - big whoop. It means nothing if I don't know that drowning means imminent death and I'm supposed to throw in a life preserver.

KS

Sunny

Thanks for sharing, Kim.

What drives me insane about the "know the signs" crap, is that by the time you know the signs, it's too damn late!

Ken

I found this article fascinating.

My daughter's classmate has autism and my nephew has Ausberger's Syndrome. They are both high functioning and doing well in public school, but a family friend has a daughter who is now in her early 30's and will never be able to live unassisted.

Henderson

Part 1 - re: the high functioning vs. the lower functioning debate that pops up here every few months

Last night, I was up on pubmed trying to find a good link re: mothers, asd and stress - I found gazillions. My searches included combinations of the following: maternal, mothers, pdd, aspergers, autism and STRESS.

Findings: We are all one stressed out group of mothers. The difference was clear between ASD mothers (of any functioning level) and mothers of other delayed children (chronically ill or handicapped, etc.). Of course fathers' stress was equal between ASD dads and other delayed children. So, there is clearly something about ASD and maternal stress. I don't need to paste any of these articles in (above findings), we all know this.

But some interesting things I found I will paste in -

That ASD mothers' coping mechanisms (emotional vs. task oriented) is key - regardless of child's symptomology.
http://www.ncbi.nlm.nih.gov/pubmed/17924181

Or our intense vigilance at all times - every moment - heightens our stress and anxiety (regardless of level of severity)...
http://www.ncbi.nlm.nih.gov/pubmed/20170429

I found an article that actually stated the stress is higher in PDD/AS parents vs. strait AD (autism disorder). Now, don't take that as a challenge - I'm sure there is an article out there stating the reverse - my point including this one is we are all stressed out.
http://www.ncbi.nlm.nih.gov/pubmed/17466072

Henderson


Part 2

But by far the scariest article I found was this one (I've pasted in entire abstract) -

"J Intellect Disabil Res. 2007 Aug;51(Pt 8):598-605.
Applied behaviour analysis: does intervention intensity relate to family stressors and maternal well-being?
Schwichtenberg A, Poehlmann J.
Waisman Center, University of Wisconsin, Madison, WI, USA. ajschwichten@wisc.edu
Abstract

BACKGROUND: Interventions based on applied behaviour analysis (ABA) are commonly recommended for children with an autism spectrum disorder (ASD); however, few studies address how this intervention model impacts families. The intense requirements that ABA programmes place on children and families are often cited as a critique of the programme, although little evidence is available to support this claim. Using Pearlin's (1999) stress process model, this study assessed: (1) whether mothers of children participating in a home-based ABA programme reported elevated depressive symptoms; and (2) whether ABA intensity related to unmet family needs and maternal feelings of depression, personal strain and mastery. METHOD: Forty-one mothers of children diagnosed with an ASD participated in this study by completing questionnaires about their child's ASD behaviours, unmet family needs, and maternal feelings of depression, personal strain and mastery. Additionally, mothers provided information about their child's intervention programme and their own level of involvement in the programme. At the time of data collection, all families had been running a home-based ABA programme for at least 6 months. RESULTS: Single-sample t-tests and multiple regression analyses were used to test the proposed hypotheses. Mothers of children participating in a home-based ABA programme reported more depressive symptoms than mothers of children with other developmental disabilities. Comparisons revealed comparable depressive symptoms between the mothers of the present sample and those in other ASD samples. When considering weekly ABA intensity, mothers reported fewer depressive symptoms when their child was older and when their child participated in more ABA therapy hours. Conversely, mothers who were more involved in their child's ABA programme reported more personal strain. CONCLUSIONS: The findings of this study supported the hypothesis that families participating in ABA experienced elevated depressive symptoms, much like any family raising a child with an ASD, suggesting a potential area for family-level intervention. Additionally, ABA intensity related to maternal depression and personal strain, and therefore deserves continued attention. Future studies should attempt to replicate these findings with a larger and more representative sample and seek to identify mechanisms through which ABA intensity may influence maternal and family well-being."

http://www.ncbi.nlm.nih.gov/pubmed/17598873

Hmmm... So, vigilance and focus on interventions is why I'm stressed out (coupled with my copying style)? And, of course the study I didn't find (but I bet it's out there) - fear for his future, jobs, friends - all things that are probably unobtainable.

My very personal situation makes sense now - that I meet other ASD mothers out there in the neighborhood (not on-line) who did diddly-squat who seem to be weathering the storm better (with little to no relation to how high or low functioning their kids are). So - working to improve my child's future/my coping style is what has stressed me out? Very interesting.

So - go with me here - it would follow that many of us (of course, not all of us) on this board are of a certain type of mothers (the type described above). So, we have a great deal in common. We need to focus our combative energy on government, policy, big pharma, etc. - not on one another.

Oh...and great article Kim (as usual :) ).

Trace

Wow Cindy, that was extremely hateful. I had no idea this was a competition for who has a child worse off than others. We ALL have our struggles.

Logan

Yes, yes, and yes. It's the 11 year old boy who would rather go to the nursery on Sunday mornings than go to his Sunday school class with the kids his age.

Theodora Trudorn

I am one of the few self advocates who do know this. I work with those who are on this end of the spectrum all the time in my work. I remember the first time I went into a habilitation center. Before then, I had always believed that things were not as they were hyped up to be. I got a rude awakening!!

I went with my colleage, who comes on here at times. Darian. We both cried for quite sometime after seeing that. I was never the same again. It is one thing to have what I have. Though it is difficult, I can function and fight my way into the world. These vulnerable yet wonderful people can not, and it burns my heart!

When reports come in to my office of neglect, abuse, over medication, violent restraint, and when I look into the eyes of these individuals, it brakes my heart! They don't want to be like this! They deserve better!!

They deserve REAL help!! Not a bunch of leeches only content to "treat" certain symptoms and will go no further!! After all the money so many people all over the world send for REAL research, shouldn't there be some answers by now?! It's been over a decade now since this regressive autism has come on the scene!!

Does no one have a heart in the medical field anymore? How can they look these wonderful people and thier guardians in the face every visit, and do not try with all thier strength to make a REAL difference?

Perhaps that is the problem. To them, all us on the spectrum are a bunch of names on paper. Researchers have no contact with us. That is the problem. It's harder to say no to someone who is pleading for your help personally, and they actually see with thier own eyes how dire it is!!

Cindy Keenan

From one Cindy to another --
There isn't a day that goes by when I don't remark that my family is luckier than many. Our child was never as severely affected as some and has recovered to the point of HFA. But many struggles remain and it's painful to watch ANY child suffer. This road is difficult for all of us in different ways. I prefer to save my ire and impatience for those who harmed our children and those who knowingly allow the cycle of injury to continue. We need to stand together as a community if we ever hope to affect change. The powers that be benefit from the rifts among us. I can only imagine the depth of your pain but it seems to me the last thing we should do is make it any easier for those powers to divide and conquer.

I truly wish you the best and hope brighter days are ahead for you and your family.

Benedetta

Anonomyous;
Your (nephew)
The one that stares into a coffee cup for 15 minutes could be having some type of seizure???? Seizures many times can be very unrecognizable for what they really are!

Jamie

Okay, my 15 year old is 6'3" and very manly looking and he is that kid in the toy isle saying "I want this for my birthday and this for Christmas". He laughs with such joy at Rugrats and it's beautiful. I'm not going to strip him of the joys he finds in life. I've yet to have anyone say he's too big or too old to be in the toy isle and I don't care what looks people might have. He doesn't care so why should I, I just watch him and take my own joy in his joy. How many kids are so lucky to not care what other people think as they run to you with joy and give you a giant hug??

K

At one time it helped, but now I can't wait for the Armageddon of Elmo's World.

Anonymous

I have a relative who's high functioning autistic but who doesn't carry the "A" label because his parents are determined to hide his autism and persuade people that he's just "quirky". Understandle for sure. Anyway, his clock did not stop in time at a particular developmental stage. Instead his clock stops repeatedly each day and it manifests as fixations. Once at age 2 he starred deeply into a coffee cup for about 15 minutes. He'd do the same thing with fans and stop signs and lights - whatever he was doing before would come to a complete halt and his attention would turn to something unusual and time would stop for him during the fixations which would only end when a parent told him "it's not important." As he got older the fixating continued on other odd things and conversations would be quite impossible with him repeating the same words and sentences over and over again. I think the clock stopping metaphor is a good one that has relevance even for high functioning kids on a certain level.

cmo

As always, may God bless you all.

Is there any special procedures you follow to get them all to go to sleep at about the same time ??

mary

Yeah, had a similar experience yesterday at Kohls. My 11 year old wanted a Winnie the Pooh stuffed animal. My heart broke.

Molly

This very much hits home with me today. Yesterday we hosted my son's 7th birthday party and the theme was Sesame Street. The other "normal" 7 year old that was here didn't even know who the characters were.

Thanks Kim for posting this. You rock!

Twyla

Cindy, my son has a severe level of impairment. I feel that in some ways that is easier than having a child who is close to fitting in, being employable, communicating well -- but who has social issues, and maybe still some learning/attention issues and behavioral problems -- who is painfully aware of his differences and wishes he could fit in and keep up. The grass is often greener on the other side of the fence, but have some compassion for others' issues even if they are different from your own. And look for opportunities to find people whose issues are more like yours, so that maybe you could feel more tolerant when the HFA parents don't meet your needs.

Laura Kozlowski

That is my 11 year old daughter as well. She would watch Elmo all day long and still likes the Teletubbies. My husband wants her to stop but it brings her joy so I cannot take it from her. She struggles every day.

kathy blanco

I look at my kids as if their life time clock was stopped, and whenever their brain damage was at it height, is where they were stuck in this life time clock is where they function today. For my son, we are talking disney movies, power rangers (the boy thing back in the eighties), etc, and my daughter, it's the disney things, harry potter, Toy Story, hannah montana, my son is 29 and my daughter is 21. They love Target, and they love the toys aisles, and yes, it's embarrassing at times to see older adults go down those aisles as they have those "christmas eyes" and or explain, I want that for my birthday..I am sure other people think it's weird...(who cares)...but I also see the same things with adults, like WARCRAFT, WII games, predication for computer games or yes I am going to say it, constantly texting etc...are those adults on the spectrum? Probably....

Alison MacNeil

What I find so baffling is the mix of thoughts and interests our kids have, some of them really sophisticated and some so innocent and childlike in the same child. I think their intelligence gets underestimated all the time because people get stuck on the 'Elmo or Thomas the Tank Engine' toy our child might feel safe with and need. My son is 5. He doesn't have savant skills but I do think people, including myself, I'm embarrassed to admit, talk to him like he is a lot dimmer than he is. I think his resistance to discrete trials is boredom.

By the way, you can tell the day the clock stopped at my house because I stopped taking pictures. On the walls of my home time is standing still.

Kim, one thing I did notice in this picture that is how absolutely healthy Gianna looks and how beautifully mothered and loved.

Amy Stoutjesdyk

Very poignant message delivered in a way for those not affected to understand. It would be wonderful if AofA did a PSA as suggested above with video's of real children narrated by Kim. Please consider it, I am sure even parents who are broke would donate to this cause. Showing the indoctrinated masses what is really happening is going to be the only way to generate outrage by the public for our children. We need to stop the madness and start the recovery!!

Dawn

Hits the nail on the head! I have a beautiful twelve year old daughter. Her passion is Binkys. I have put my day in crying about it. But,... she has such little true interests, I am actually using them for rewards for homework. She is picking up an interest in her old gymnastics outfits too, recently. Yes, we will be enrolling soon! During her regression, she had no interests. This is progress... And,... I'm loving it!

Not an MD

@ Cindy- I am truly sorry for your pain. The reality is, we, as parents, all suffer tremendous pain no matter how severely, or how mildly, our children are affected. It is heartbreaking to see your own children struggle in what should be a simple, easy to navigate, social setting. It is horrifying to know that even if your children are among the lucky who can to learn to speak, and to write, that they may never have the concentration necessary to hold a job, or drive a car without crashing it. We all want our children to thrive and to recover 100%, whether this is possible or not. We all want them to one day be self sustaining and self sufficient. I pray for the recovery of all of our children.

I have actually spent time babysitting for the child of a very close friend who's son has classical autism. I cried for days afterward. I do feel for everyone who has to suffer at all due to this hideous, iatrogenically induced disease -both the parents, and their children- but mostly the children, as they have to live without us when we are gone. I, and many, many others, do have a clue.

Sylvia

I am so sorry for your loss Maria. My mother is the same about my two boys with autism. Losing someone that loving and supportive is a huge blow for anyone, but especially for our kids. I dread the day my mom passes.

pat,rn

there are no words, this should be on on the cover of every newspaper in america.

Theresa O

I hadn't seen the Autism Speaks PSAs until I read this post, and ... wow. The thing that grabbed my attention was the incongruity between the mention of the 600% increase and the lack of inquiry into the cause. I can't imagine a similar PSA for, say, cancer: "Cancer has increased 600%. Know the signs. Be aware." I mean, what?!

Kim, your ad is much better. For TV viewer whose family is not currently affected by autism, the picture of your beautiful teenaged daughter in the toy aisle wouuld give a real glimpse into what living with autism is like. The message isn't: "Hey, autism is out there." The message is: "This is what autism looks like. Start giving a damn."

Autismisreversible

"parents of children who have perhaps made more of a recovery than others do feel the pain of parents whose children have not. And they still have the right to complain. Complain about lost intelligence, lack of friends, difficulty in academics. It does not mean they, as part of the larger autism community, do not have contact with 12 or 15 year olds who love Elmo. They do and their hearts break."
Every moment of everyday I thank God for our recovery from severe Autism. However talking and playing with age appropriate toys does not equate to graduation, college, job, moving out, finding a spouse and having kids. All of these things I expect will be a huge challenge for us and could have been normal, had the doctor not offered to catch us up with an insane amount of vaccines. Any loss big or small with Autism is grievous. Let's stick together not turn on parents who have made strides. Tomorrow I hope it's your kid.

Why would someone want to pit us against each other?

Cindy,
Your angry post seemed familiar, so I did an Age of Autism Google search for "barely on the spectrum," and low and behold, there's a very similar comment from three months ago under a different name. Neither comment is representative of most autism moms who are generally very supportive of one another.

Jenny Webster

simple. beautiful. nail on the head.
This is my son. This is your daughter. It's all our kids.

I feel bad when i tell my son no, that he can't have "that" b/c it's a baby toy.
But he likes it.

I was just having this discussion that other day... I was filling my parents in on "Crapisodes" --b/c thankfully, that was not our fate. We were talking about the way autism it portrayed on TV.
I said that just once... just once I want to see a show REALLY portray autism... I want to whole shebang --fecal smearing included. THEN maybe people with start to get it.

My kid isn't "cool" or "quirky" in the way they think. He isn't a good basketball player. He can't count cards or do giant math problems. He is a child who once ran in front of a moving bus to get away from a fly. Because bugs that fly and buzz put him into "flight" of the fight or flight response.

Autism Awareness. We're doing it wrong.

Twyla

Yes, she is indeed beautiful!! And yes, I can relate; my son is still fascinated with certain very childish toys.

Katie

My son is not quite 3. At the request of his OT, I put all of the toys in our house that make noise or have lights in a closet.

This is the third time that I've come back to see this. It makes me cry, but I keep coming back because it is a message that needs to be seen. How is the awareness that AS is spreading helping my son?

We are just beginning our journey. We don't know what his future holds. We may have a similar photo in 12 years.

Angie

Thanks for posting! She is beautiful!
I know all too well the 'drill' at Target/TRU/etc, it was especially heartbreaking when our daughter was a newborn/infant/toddler (will be 4 this month), when her older brothers seemed to enjoy and gravitate to the toys she was 'growing out of/moving on from'...

I read the press release here, http://multivu.prnewswire.com/mnr/adcouncil/45005/

And the part that made me most fired up (the whole thing makes me angry of course...I surprise myself that I still get angry, even though I expect these things to be so off track and purposely ignorant (you know what I mean) that I swear there wouldnt be anything I would get upset about because I always expect it to be bad...but it surprises me because I still do get mad..lol...)..
Anyway, one of the most angering parts was this part:
"...launch of a new series of public service advertisements (PSAs) designed to raise awareness about autism and to empower parents to take action if their child is not meeting certain developmental milestones."

WHAT?! Are they seriously kidding here?
"EMPOWER PARENTS TO TAKE ACTION?"
They should then do more REAL PSA's to show what Autism IS for those who live with it, NOT the 'warning signs' because if people really KNEW what Autism IS and what the REAL RANGE of issues are, then I guarantee that there will be MORE people, young parents, teachers, doctors (yes there are still docs out there who know squat about Autism, the whole reason why there are PSA's needed to show warning signs, because docs arent aware/willing to SEE the WHOLE picture behind what causes Autism)...
Call it Shock awareness or whatever, but take drunk driving for instance...what about all of those programs that go to HIgh schools around prom time to recreate a bloody nasty drunk driving crash to SCARE the kids to not drink or drive...what about all of the scare/nasty STD pics they show teenagers in High School health, sure scared me and gave me the empowerment and information to make educated choices...and the black lungs and crappy livers Dr. Oz has taken to Oprah's show to scare the audience...Scare them with reality...because no one has ever SHOWN them what REALITY is...to put it into their faces, and not just show them some unrelatable statistics on paper or 'touching PSA's'...

So, REAL empowerment comes from REAL truthful and REALLY COMPLETE information, the good,the bad, and the UGLY!
I am sorry but how is this PSA video going to get the attention to a new parent, if the rising stats and other PSA's havent already??? How is this going to get any REAL info to those that "...Despite the growing prevalence, research shows that many parents of young children have very little knowledge about autism."?

As a Mom to 2 boys on the spectrum myself, I can tell you that the parents of young children ARE very AWARE of Autism, they are AWARE of the increase...but what they are NOT aware of, what they so desperately are searching for, is REAL information...not PSA's to say how relevant Autism is, how horribly fast its growing and devistating lives in its path.
Its really angering that the PSA shows that now its hit home, now its not the 'kid whose cousins friends neighbor's kid has Autism'...its 'your kid that has Autism'...I mean, how stupid really...

Ok, I got off my point a little bit, sorry for the rant here...back to the point..

It angered me when they wrote "... to empower parents to take action if their child is not meeting certain developmental milestones."

Ok, how does THIS PSA, or any that they have done in the past EMPOWERED me to take action? They havent, and I am sure that by the time a parent sees a PSA on tv or in print, that they already have been trying to figure out what's going on with their child...IF they have researched anything online, read any parenting books written within the last decade, talked to anyone (teacher/nurse/friend/relative) that they ALREADY have been told about Autism...right?
So, the fact that they choose to say that one of the reasons for the PSA is to EMPOWER PARENTS..well they fail...
ok,so there might be a very small percentage of people who do not know what Autism is, but has anyone bothered to research WHO those people are? I am willing to bet that none of them are of child-bearing age, probably all are over 40, actually probably all over 50 at least...
AND also, ok if they are still kidding themselves that AWARENESS is the KEY to solving this problem (rolling eyes) that there are people who need to know what Autism is, then why do they choose to only say " ...child is not meeting certain developmental milestones."
Where did the BIGGEST sign of Autism go? Where did ANY REGRESSION OF ANY SKILL, LANGUAGE, BEHAVIOR/etc go? NO MENTION of REGRESSION to me is a HUGE 'sponsor' thing..worried that IF they mention regression they might upset those sponors (IE...COLD HARD CASH $$$) or 'open the door' to the suggestion that there is something that can happen to CAUSE Autism...by using this terminology and completely eliminating the words/info on regression right with the mention of delayed development, it is TRANSPARENT that they totally mean to send the message in the PSA that Autism is something you are born with...not any environmental component at all...
...and if Autism is such a mystery still, then how can ANYthing be dismissed..

If its true that they want to run Autism 'awareness' campaigns then they need to run HONEST AND REAL AND FULL information about Autism...not stats and info that someone not living with Autism couldnt possibly relate to...it needs to be RELATEABLE and it needs to show the REAL dangers of Autism, why its SO important to catch it early and start therapies early...

They are wasting money and time and energy, and doing more harm than good by doing PSA's like this.

It should NEVER be about 'who will get offended by it' or 'we dont want to upset such and such or this or that'...
GET THE INFO OUT, plain and simple...you cant please everyone, and surely when its a matter of my childs future, I dont care who gets offended...and the matter of our countrys future, I dont care who gets offended...but they need to show the TRUTH and make it relatable..plain and simple...
...

Oh, and it would be nice if they outright and publically scrutinized ANY tv/print/media/etc that points fingers/blame/states that parents of kids with Autism are 'looking for something to blame'...'are crazy'...are 'looking to scam the system'...all of those things we hear so often..because, if a young parent, out there, who does NOT know much about Autism, has a question about a delay in development or regression continues to see these types of statements in the news and media then I am sure that parent will take LONGER and be more likely to 'wait it out' ..be more likely NOT to question the doc when they say to 'wait it out/this is normal for boys..etc'...because surely they do not want to look crazy, overly paranoid, whatever...if AS and others spent more time publically dismissing those negative claims about any Autism Parent, then I think THAT would be better than ANYTHING they have done so far...hey, because no matter if you are an Autism parent who beleves like we do that there ARE multiple causes to Autism, that everyone is individually at risk with varying triggers/etc to varying genes at varying times/etc...or if you are an AUtism parent who believes in 100% genetics, or that 100% vaccines...or any combo inbetween ...we are all the same in that we are AUTISM PARENTS...and I am SURE we can ALL agree that its important TO KNOW the risks and to know the warning signs...and surely can all agree that AS and this PSA is a HUGE waste of time, energy, and funding!

AS needs to use the 'awareness' and 'warning signs' campaigns for the doc's because us parents and anyone under at least 50 years old KNOWS about Autism...because we are living in a time where it IS SO PREVELENT...make the doc's aware that its NOT 'ok to wait it out'...that 'it is not normal for boys/etc'...and a regression is not something to EVER wait out to see if they only stopped onething because they were learning another ...
..because IF the Doc's did their jobs and were educated on Autism, then there would be no need for "...empower parents to action..." because who would they need to empower themselves against?

This post is long, but I just had to get it out..there are so many other things plainly wrong about the previous and current PSA's...but I thought I at least had to share my anger with the lack of talk about 'regression' and stating that there are still going to be those parents who wait to ask/research because of how they see all of us parents portrayed in the media..ya know?

Thanks for another great and MOVING piece here! Keep up the great work, and thanks for reading my long comments...
I really DO try to edit..lol, but sometimes I just have to type fast in the 2 seconds I have to myself..you all know how it is !LOL

Thanks!
Angie
Mom to Ethan, Alex, and Megan

Jennifer

Thanks for sharing. Great photo...

GH

How could any human heart not be touched by that picture?

Kristine

Yes. This is like putting my diapered 5 yr old to bed in a crib (w/ tent) to watch baby einstein on his ipod. Laying in the twin bed next to him is his 6 year old brother reading Harry Potter. I'll contribute that photo to the campaign.

kathleen

Cindy,
My son has danced around an autism diagnosis for 4 years. He was diagnosed with PDD and I feel the pain of his diagnosis as well as the pain of an autism diagnosis (or any other medical condition) for other families. I see us in the same boat. The boat that requires parents to alter their dreams for their child. My son, ELlis, is severe enough to have many problems trying to acclimate to a school setting but yet, he is able to tell me that he loves his sister. He knows what he wants to eat. We are lucky. BUT, Ellis knows he is different, and that is the heartbreak of a more mild diagnosis. Ellis recognizes when he is shunned by peers and unable to do the things that they do so easily.
I would never suggest that what we go through is more or less important than what a more severe child and family goes through. That is not to say that I am not thankful for a milder bit of damage...I am. There is simply nothing more painful than a sick child. And in the case of most families here, a vaccine-injured child, that we, as parents, are left with the guilt of "what we could have done had we known better....."
Kathleen

Cynthia Cournoyer

I think they would say: Learn the signs so more of you will feel bad and send more money so we can keep studying it. Then we can buy more ads so more people will feel bad and send more money. We just want to study it forever, we don't want to really know the answers.

Diane

Cindy -- parents of children who have perhaps made more of a recovery than others do feel the pain of parents whose children have not. And they still have the right to complain. Complain about lost intelligence, lack of friends, difficulty in academics. It does not mean they, as part of the larger autism community, do not have contact with 12 or 15 year olds who love Elmo. They do and their hearts break. When I see my friend walking out of the market with diapers for their child who should have learned to use the bathroom 8 years ago (and may have, but lost their ability) it IS painful. But I am still sad for my child, also. The future is very uncertain for her and I am scared shitless. Please don't think we don't care or have no idea. Many of the people with whom I connect strongest have children like beautiful Mia. And I worry about them, too. The children and the parents.

Kim - thank you for your continued advocacy and showing the truth.

4Bobby

That picture says so much. That could be my son in the toy aisle...

Cindy

This is exactly why the moms of "barely on the spectrum kids" (you all know who you are) drive me crazy with their complaints. They have NO CLUE what it's like to have teenagers who still love infant toys and will forever be two years old.

Beatrice

Wow is all I have to say. My little boy will only be turning four in October, but I can relate to this because he transfixes on things as well. There needs to be a sense of urgency and all it seems like is everyone is trying to silence us. Why though? Where is the help for our babies?? What did our children do to warrant this lack of help and concern????

L Land

Yes beautiful and sad and thanks for helping me with the same pain. (Pain shared, eases it a bit.) The same disney videos on there second decade of use - when the "coming to theaters Summer of 1992" plays on our TV you know we having been watching the same video for a VERY long time. As I write this my 19 year old son, who I get told is very handsome, is walking around making noises carrying his musical caterpillar, from the infant to 2 aisle at the Toy Store. If their autism were genetic wouldn't physical appearance be affected???

Stagmom

All the experts in the world can not sum up severe/moderate autism or capture its spirit like my daughter does in that photo. It was a "moment" and thanks to technology and enough coffee to think clearly - I was able to record it. I stood in the aisle at Target, tippy typing with my fumbling fingers as the kids played with the toys. I'd found the AS PSA so lacking and disappointing - you'd think I'd be used to it by now. I am not. I continue to hope they will become even minutely relevant to people outside of their own staff and grant recipients. I don't hate AS - I happen to like many of their people quite a bit and admire their work. Overall though, I find them to be a collosal clusterf*ck of lack of nerve and fear of losing donations from top to near top. The folks in the trenches are doing good work. If AS were in charge of AIDS in the 1980s we'd be looking only at Magic Johnson's DNA and watching PSAs of rainbow painted Volkswagon Beetles driving into the sunset.

Maria Dwyer

I lost my mother last week. She was an enormous believer in my son Colin. She only saw the good and the potential and believed in his recovery. When he would line brooms and mops at her house she would say, "He loves to organize and that will be a great asset for him someday". It's extremely hard to see Colin lose one of the few people in his life who truly believed in him. We are in such an extreme state of urgecy to help our kids and prepare for their long term future. Kim nailed it for me. Thank you.

Teri

Are THEY AWARE??

Amen and "bingo," Kim . . . . A stopped clock. As in Gayle's comment, this is EXACTLY what multitudes of children and families face . . . . teenagers reciting the scripts from Disney over and over and over and over -- IF they are higher functioning and can talk . . . . looking at the pictures and pressing musical buttons in their favorite Dr. Seuss and Sesame Street books before they are restrained in a facility for lashing out in horrific esophageal and gastrointestinal pain if they are lower functioning. THE CHILDREN are really TRAPPED because of the "powers that be" that are acting "trapped" wanting to maintain the status quo and the organizations that facilitate this by being "trapped" in some time warp before the availability of efficacious biomedical treatments that have been effecting significant improvement and RECOVERY in children for many years. WE ARE AWARE ALREADY!! We can spot "autism" in a child in a parking lot at a fair. Massive amounts of money glutted from the community and spent on awareness without any concrete help and hope to release children from the debilitation of an autism diagnosis is futility and an obscene waste of resources.

Are they AWARE of individuals dying in facilities because their legitimate biomedical needs are being ignored due to the label of autism?

Are they AWARE that children are being abused in school because they cannot talk or because of psychotropic band-aids while their legitimate biomedical needs are being ignored, which would help them talk and also get out of pain that causes behaviors?

Are they AWARE that while some organizations' officials take big salaries and carpet their posh zip code offices that multitudes of families don't know how they'll be able to afford their next bottle of vitamin C?

Are they AWARE that mothers in rural areas who cannot afford therapeutic diets or pesticide-free food are being bullied into putting more toxins in their children's bodies via vaccination or bullied into giving psychotropics for their kids to stay in school, while they desperately try to make ends meet on a single-parent income working full-time?

Are they AWARE of children dying from seizures as their parents watch in horror as their beloved slips away?


There is a saying among some churchgoers: "Christianity is not just pie in the sky when you die; it's steak on the plate while you wait." OUR CHILDREN NEED HELP NOW!! No more 20-year faux studies while collecting more money from already poor parents and glutting the available resources from agencies. We know how to help kids NOW!! We know better directions for studies to help kids and families NOW!! We are AWARE -- that children need help NOW!!!

Here is a song that so many of us must think of when we look at our precious children:
http://www.youtube.com/watch?v=yGEe_zpddNI

Anne McElroy Dachel


Kim,
Seeing your daughter like this strikes me to the core. Where is the medical community? How long will they idly stand by with no answers and no alarm over what's happening to our children? When will someone ask why this beautiful child stopped developing?

How can we watch as we lose another generation of children?

This new Autism Speaks PSA is the most frightening example of how we've abandoned our children.
http://multivu.prnewswire.com/mnr/adcouncil/45005/
Everyone knows someone with an autistic child.
There's been a 600 percent increase in the last 20 years.
Learn the signs.

Learn the signs?
This is our response to autism?
Learn the signs because your child may be next.
There's nothing we can do to stop it.
We don't even try to explain why it's happening.

Just learn the signs.

Kim,
I'd like to see a video of YOUR DAUGHTER LOOKING AT BABY TOYS AT TARGET and you narrating it. I'd have you say,

"This is my 15 year-old daughter who has autism. One percent of children now have autism. Learn the signs."

I guarantee if we had videos of real kids, not some narrator conditioning us to autism, people would take note.

Thank you for this piece.
Love to you all.
Anne


barbaraj

Gatogorra,are those statistics hidden, we read and hear the lifespans of some autistics shortened, yet no one seems to put that into print. Not much different from the other facts that are watered down for us. Example, 1 in 66 boys are autistic? Would that be 1 in 58 "vaccinated" boys? Could we say there is no risk to 15% of all children? I guess we'd have to apply for a large insurance policy to see how much they rate it, or turn it down to understand the real statistical risk? I'm sure the actuaries are "on it".

CarolynC Kylesmom

Beautifully said, Kim. Beautiful, stunning little-girl-teenager. . . stopped in time. Please can we focus on cures and ways to get the clock moving again . . .Please can someone win the lotto and give Age of Autism a huge advertising budget! That was beautiful . . and makes the point better than any single image or words I've seen yet.

AutismComic

Autism: A little worse than quirky. xoxo

Kelli Ann Davis

Whoa...stopped in my tracks by "it is the pain of a stopped clock"....

The first lines from "I'll Stand: (Miles' Song) which I wrote about 8 years ago:

"How can words explain,
life’s deepest pain
With me every day

It’s like time forgot,
the tender spot
Where my desert lays"

Yes indeed. The Pain of the Stopped Clock...multiplied by 3 for Kim.

God Bless You Dear Kim. You and your Beautiful Angels...may God step in and start the clocks once again...

Kelli

Gatogorra

Thank you for cutting through the bull as usual, Kim. In describing the significance of your post to my husband, I mimicked the AS ad campaigns, complete with drippy-wistful-happy elevator music. Car salesmen scream to sell cars. But AS can't even put a note of real alarm into these PSAs.

It's not lost on us the agony of watching a child so exquisitely beautiful and unprepared for the world mature. Beauty can be a curse in children who can't defend themselves. So we as parents can never die as we're all prone to saying, because evil never sleeps.

We also can never stop trying to recover our children, for their own futures, for ours and so they can be one less burden on a system that will never be able to afford the coming wave of soon-to-be-adults who will hit the system. Do the "beautiful autism journey" folks think the massively increased risk of rape and abuse in schools, residential homes and institutions is beautiful? How about knocking a typical quarter century off the lifespans of the disabled with chronic and mandated use of mainstream drugs to keep the 70% of severe cases quasi-comatose for cheap, bottom-of-the-barrel institutional staff? And the wandering deaths, deaths from seizures, increased rates of chronic diseases? La la la (drippy-wistful-happy music). Where's the outrage at the loss of self and future for our children? Until the public shares our outrage, it's up to us to sustain it all ourselves.

Crystal

So true...

Debbie

"It's the pain of a stopped clock," so very true and very sad.

Benedetta

My son is 24, and he lines up vast numbers of Dragon ball Z figures. I took a picture of it so the SSI judge could sort of understand.

He did not.

But a lot of us do here.

If the world was not such a cruel place, I really wouldn't mind seeing a pretty little teenager stay a child for life. It is bitter sweet situation!

Gayle

Kim, your daughter is beautiful! My son also spends his time at Toys R Us looking at the Toy Story and Disney Cars toys. He is 23 years old! My whole family has spent countless hours in the toy isle as the clock has stopped for us too! God Bless us, everyone, especially our beautiful children with autism.

cmo

Autism Speaks thinks a 20 year genetic study is the answer... Earlier diagonsis and treatments...

We "all know how to see it and find it" in children,

Prevention & Treatments, not looking in the wrong place, is the answer to everyone except those responsible.

God bless you all.

Beth

Okay, since this was directed at BBDO, let's brainstorm a more useful ad campaign for them. I'll start. Using Kim's pic, the ad copy could read:

"Autism is...Incongruous."

Teresa Conrick

This is so true, Kim. As I type this, Meg is upstairs watching, "Baby Songs", a series of videos that she watched as she regressed into autism, now 15 years ago. This is her favorite and speaks volumes. Our kids are beautiful and trapped.

http://www.youtube.com/watch?v=mj-G5k9Pb7g

Jacqueline Gauthier

Yep. Your picture speaks louder than AS new PSAs. Thanks for sharing.

Erik Nanstiel

Concur, Emily. THe pain of a stopped clock. That's my pain, too. My two-year-old in an eleven-year-old body. THanks, Kim... you brought a tear to my eye, too. Your daughter is beautiful. :-)

Beth

This picture of your beautiful daughter speaks a thousand words! Thanks for sharing.

Continual and repeated doses of the realities of autism is what America needs to wake up to this epidemic. "Socially awkward" in print doesn't convey anything meaningful about the disorder.

HBO's Autism the Musical remains the best thing I've seen or read that accurately portrays the depth and breadth of what autism is. If you haven't seen this great documentary yet, you should, and so should all your friends and family.

http://www.hbo.com/documentaries/autism-the-musical/index.html

emily's mom

It is the pain of a stopped clock. Beautiful. Kim, you always make me cry.

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