This post was originally run on March 1, 2013, but bears repeating.
In 2006, Nick was diagnosed with autism and the April ‘Awareness’ campaign seemed reasonable to me. Brand new to the community, I liked the idea of the autism world working to create a friendly and gentle space for my child. Spring 2007, the ‘Awareness’ campaign rolled out again and I thought, “That’s odd, same as last year?” Ha ha, I was so naïve. 2008, yup, ‘Awareness.’ It was Groundhog Day: 2009, déjà vu all over again; 2010, same shit, different year; 2011, been there done that; 2012, same as it ever was.
Today is March 1, 2013 and we are exactly one month away from yet another April autism ‘Awareness’ campaign. The only difference I see now is that they want you to ‘Light it up blue.’ What blue light bulbs are going to do for my autistic son is beyond me. If I were any more aware of autism I would be dead.
What a big circle jerk this is. ‘Awareness’ has come to mean a safe place for lots of people to feel like they are doing something for autism without actually doing anything. It feels intentional. They are purposefully misdirecting the positive energy for autism away from progress toward doing nothing but feeling really good about it. In the meantime, they are running down the clock on my son’s life or toward their retirement. They are aggressively doing nothing while children are getting hurt and some are dying. This is kind of like the autism ‘Learn the signs’ push. We know the signs of autism. We know getting intervention early improves outcome. We also know that 1 of 88 children shouldn’t be getting autism in the first place. Katie Wright said in an Age of Autism piece a few years ago, “If you have stage 3 Breast Cancer – do you really want to sit through a lecture on ‘Learn the signs’?
We are aware and we’ve been aware for a long time. How do I know we are aware enough? I see awareness of autism across all generations; kids, adults, and grandparents.
I was at a local toy store with Nick recently and he was playing in the ballpit. Three little girls around four years old ran into the store and leapt into the small ballpit almost on top of Nick. Nick jumped out because he was feeling too crowded and ran to the other side of the room. One of the little girls said. “You can come back in. You can play with us.” Getting no response from Nick she repeated herself. Nick looked at her but didn’t answer. She looked at me and said, “Why doesn’t he talk?” I spoke up and said gently, “He has autism. He might like to play with you in the ballpit, but right now he is feeling a little shy.” She said to her buddies “Oh, like Joey. He has autism. If we are really quiet and calm, maybe he’ll come back and play with us. Let’s try.” Four year olds are aware of how to connect with an autistic child.
So often I have been at the cash register of a store with Nick and the check-out person will try to engage him. He may connect, but if he does his speech is soft and tentative. They will say to me, “He’s so precious,” and give a kind look which I’ve come to know means ‘I’m aware there is something developmental going on with this kid and I want mom to feel better.’ I will say quietly, “He’s vaccine-injured. He has autism. He’s come a long way, but we still have a long way to go.” They will say, “He looks really good. My nephew has autism. He can’t speak yet, but his parents are doing everything they can. It’s not easy I know.” Once a week this happens to me.
The grandparents are worried. They can’t figure out why these kids get so many shots when the majority of us made it to adulthood with one-eighth the vaccine load. They had measles and chicken pox as children and survived them. They don’t understand why they can’t spoil their autistic grandchildren with a simple ice cream cone. They are sad to see the mothers of autistic children unable to use their advanced degrees for work because the demands of the autistic child are too high. They are shocked to learn how hard a school system will fight so they don’t have to provide legally mandated services. Grandparents are financially supporting a lot of the therapy and biomedical treatment in many financially strapped autism families. They grieve not being able to have a deeper relationship with their autistic grandchild. They are critically aware that their adult child will have their hands full caring for the autistic young adult and will not be able to take care of them as they age and life becomes more cumbersome.
We are all aware. The people with the power to make a difference with autism policy know ‘Awareness’ is redundant. So why aren’t we moving off the ‘Awareness’ hamster wheel? Because it is safe: no one is to blame and no one is venturing into dangerous new ground like causation. It’s like the fundraising effort where autism families are asked to walk around a track at a local high school. These go on all over the country year after year. I refuse to participate for a number of reasons, but the irony of walking in circles is lost on few.
Ironically, the ‘Awareness’ campaign is largely embraced by many of the same people who push the ‘No rise in autism numbers’ theory. So if the numbers haven’t gone up, and the number of autistic people has always been this high as they say, then why would we need an ‘Awareness’ campaign? We’d already be aware, right? We wouldn’t need to be MORE aware or NEWLY aware? This doesn’t work. You can’t have it both ways. You don’t get to have ‘No rise in autism numbers’ and ‘Awareness’ campaigns spouted over and over ad nauseum from the same people. However, we know the numbers have gone up, and we’ve had ‘Awareness’ blasted at us year after year like a broken record.
But are we aware of the right stuff? Does the average person making their $5 donation at TJ Maxx know that autistic kids are really sick, or that with the right medical treatment an autistic child might get a lot better, and even recover? No, because that leads us back to the dangerous subject of causation, which leads to the compelling data on vaccines, pesticides, pharmaceuticals and toxicity.
The autism policy wonks hope that as a community we will be comfortable spinning our wheels like this for years to come, just becoming more and more aware. I’m stir crazy with awareness. I want to see an ‘Action’ campaign. Let’s see how much we can get DONE for Autism in the month of April. I want to go all Act-Up on their asses. I want to see big fat changes and I want to see them fast. I want to see this handled like the emergency that it is. I want to see people take risks, be bold, be brave, put themselves on the line. Let’s get moving, dammit!
Just say no to ‘Awareness.’ Pass it on. It’s time to demand ACTION!
I’m tired of being polite. This isn’t a tea party; it’s a REVOLUTION!
“Revolutions do not take place in velvet boxes. They never have. It is only poets who make them lovely.” Carl Oglesby
~ Mama Mac
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Honesty, I disagree with this article. People are NOT aware of autism and the signs. Of course people with kids with autism are….but April 2nd Light it up Blue is to raise awareness to EVERYONE! And so goes for Autism Awareness Month! And actually… there are MANY parents with kids with autism who NEED to be more educated about autism. I started a Facebook page as a support group for parents with autism. I actually had a mom message me… she had a son who was 18. She didn’t get him diagnosed until he was 6. So he had been autistic for 12 years. She actually asked me “what is autism?” “is autism and autistic the same thing?”. She had NO clue!! Not only did I feel horrible for her… I felt horrible for her son! He was obviously not getting the care that he needed! So NO.. there is NOT enough Autism Awareness! There are kids being diagnosed everyday…meaning there are NEW parents to the autism community. THEY need to be educated. Families need to be educated…teachers, policemen, firefighters, store clerks, dental and medical assistants….. I could go on and on. I can’t believe that you would actually say that autism awareness is for pussies! I actually find it quite and rude… and honestly, immature! And Autism Speaks and other organizations are raising money to go towards “finding a cure” (which, btw, my son doesn’t need a cure or to be “fixed”) and towards finding out what causes autism. You sound like you think nothing is being done. That is just simply not true. There are many articles that you can read that talk about testing being done and new findings. Anyway… I could go and on and on about how much this article is just wrong…but I have to go and get my autistic son from school. I guess I need to get my pussy ass up….
We are now 9 years past dx. My son was diagnosed during Awareness Month. I recall watching a news show that informed me that autism was a “lifelong” hopeless condition and that if I was really lucky, some day my son could get a job folding pizza boxes. Since I had been telling our Pediatrician for over a year that something was no right with our son, and she kept repeating he was just “all boy”, I knew that awareness was needed. However, I recented that the “awareness” campaign did not offer any direction for actual action. In the subsequent 8 years of awarness month, I have become progressively more recentful. If you are not aware by now, then it is your own damn fault. Let’s move on! I want an “Autism Kick Your Ass Month” or an autism “Let’s Direct Appropriate Funding to Autism Research Month” . I too do not want to spend my Saturday walking in a circle to raise more money for awareness.
I do understand that more than just Autism awareness needs to be done but I have run into sooo many people that have no idea what it is and what it means. I had a friend email me just recently that wants to start a relationship with someone who has an Autistic child but knows nothing about it. I explained a little but told him that no child is the same, he needs to ask the mother, that if he wants a relationship with her he needs to understand them both. I wish more people would ask questions instead of staring and being rude. My son is 7 and we don’t get out nearly as much as I would like to but it’s hard. It’s frustrating when people don’t know how to deal and just don’t seem to want to know how to either.
Well said. You and people like Lisa Ackerman (TACA) are about getting results and taking charge. Thank you for putting into words that which all of us feel, but not necessarily able to do.
Thank you for posting this and for helping me to remember that I am not alone. I just posted a note to my FB page that using the word “Happy” in front of Autism Awareness Day/Month feels wrong to me and I wish people would stop using it. 20 minutes later I received a group email using just those words so obviously others do not feel the same.
Agreed. My only comment is really in the title. Pussies are STRONG. Really STRONG. As all of us autism Mammas are aware of that fact. I think we should take “Pussy” back for ourselves and redefine it. I AM A PUSSY. A pussy big and strong enough to birth my children. Powerful, robust, passionate. Tenacious enough to never give up. Yet, me and my pussy are infused with hidden powers, tucked away deep inside. Sometimes subtle, tactical, shrewd. MY PUSSY ROCKS. Autism-you better be AWARE of my pussy. It’s gonna kick your sorry ass.
Love, love, love this post! This April, for Autism awareness month, I’m going to make people aware of what causes Autism. Don’t light it up blue, just stop vaccinating your kids and stop filling them with other poisons. I know some will be in denial, I know some will be angry, I don’t care. I’m sick of people ‘raising awareness’ but not actually wanting to make a difference. The same goes for raising money for cancer. For 40 years, they’ve been ‘bringing awareness’ to cancer causes, and ‘raising funds for a cure’…how about telling people how cancer is caused…don’t see much awareness for that. If some of the money fundraised actually went to helping the people, it wouldn’t be so bad, but all this fundraising for awareness and cures just goes straight back to the people who create the problem in the first place. Bring on Autism awareness month I say - I’ll be making people aware alright!
well said! action is the key, especially to prevent further damage.
This generation of children who are growing up with peers with autism are super aware. So aware of autism are they that by the time they reach adulthood they’ll likely seek genetic counseling and testing before planning their own families. Promote autism awareness but promote it as a genetically inherited condition. Offer genetic screening to parents of the future who are fearful of passing on “bad genes”. Cleanse the gene pool. Isn’t that the end game?
Yep!
Eugenics has come full circle.Josef Mengele would be so proud.
And we willingly have/do line up for toxic birth control, vaccines, etc etc etc
God weeps with us for this is man made evil.
Wow…if I could write that is exactly how I would say it.
The title pretty much says it all. EXCELLENT.
This is awesome! I wish I could share it with everyone including my family, teachers,kids etc.,. Unfortunately, with the language used its not appropriate for my kids to read or share with friends or for me to pass on to my school principal and teachers. Do you have a version with a cleaner title that I could share?
I got it!!! Ready? *eh hem*. . . drumroll pls . . .
“AUTISM IN APRIL: SPRING INTO ACTION!!!”
Yes, I know I’m a genius. You’re welcome. *takes a bow*
Hahaha LOL
During April, I spend the month making people aware of causation and epidemic numbers. I share studies linking environmental insults to autism and what the exponential rising numbers might mean to their bottom line in the future. I don’t want people to feel good, I want them to be scared into thinking that autism could affect them. Maybe then they will take action to try to prevent it themselves. That is the only awareness I care about - prevention!
Absolutley right, we are stuck in the mind control of raising awareness and I should think that pretty much suits government et al. You have just cracked that wide open,time to wake up !
Jesus, Joseph and Mary….St. Rita, the patron saint of lost causes is now beckoning. Where is the emergency for Autism? Hello, hello?
I thought that was St. Jude. However, I have never believed that this was a “lost cause.” I think it’s just one that we haven’t won . . . YET.
You nailed it! Love it!
I am AWARE that American children are being used as guinea pigs in a grand experiment to determine how many PhRMA products can be introduced into a generation before death or disability interferes with their future utility as a weak and easily manipulated worker-class…Screw in the blue lightbulb if you want (but donate your money to local charities who take ACTION) - I will stand atop it and proselytize to demolish the ignorance of the masses!!!
A Little Less Talk and a Lot MORE ACTION!!!
Bravo, well said Mama! I was waiting at the service desk at BJ’s yesterday and my son wandered 10 feet away to look at the Optical counters wares. I was not worried in the least, he wasn’t going anywhere and wasn’t doing anything but looking. Apparently the person working the optical counter did not agree, and while I was busy taking care of business he and his customer began to grill my son. What is your name, where is your mom, are you lost? My son being my son simply said “I don’t know”. You would think the ceiling fell…. Where is this boys mother? Whats wrong with him? Ugh… First of all he’s not little, he will be 11 years old in a few months and is almost 5 feet tall. Second, I said to the service manager the staff here need to be trained to recognize Autism and other disabilities as the numbers are so high some days there are likely to be dozens of children with Autism in and out of a large store. She turned into a dear in headlights… just stared at me with absolutely nothing to say. I went outside, loaded my car well “aware” of Autism.
Yes yes yes!
May I go against the grain - a bit? … just my 10c worth - the community where I live could do with being a LOT more Autism-Aware (I live in a small city in Australia) … still meet a lot of people who think Autism = Rainman or really have no idea (especially where girls are concerned) … in my opinion Autism is a complex condition, or more like a group of complex conditions (with a genetic pre-disposition/auto-immune basis) … Vaccine injury is just part of the picture. Some children show plenty of signs of Autism before their 12 or 18mth vaccinations and some children with Autism showed no reaction/change after their vaccinations at all … Maybe we can jump ON the Autism Awareness ‘bandwagon’ and make people AWARE that people with Autism are like societies ‘canary in the mine’ and should be our wake up call - and make people AWARE that there are many treatment/intervention options that are available BUT a lot of those are hideously expensive and/or time consuming - and therefore out of the grasp of a lot of families… just a thought.
I just got an invitation (Facebook page) from Autism Speaks for a donation to “promote Autism Awareness”.
I reported it as spam.
Thanks so much for this ~ Awesome.
You nailed it, MamaMac! I completely agree.
Agree, agree, agree — “circle jerk” sums it up.
Within the past hour I received one email announcing a feel-good talk organized by dinosaur status-quo bureaucrats, plus another for a waterpark event sponsored by Autism Speaks. Leave it to AS to marinate kids in chlorine for hours and set off toxic reactions without advising parents to soak the poor things in epsom salts afterward.
The bright smiles of denial will continue as long as people can make money off autism services and dipstick parents keep waiting for “they” and “them” to do something.
LOVE! I’m sitting here trying to figure out how to repost with just one line instead of copying the whole damn thing!
I got some grief last year when I (politely) asked friends NOT to wear blue last April 1st. One response (that actually made sense) was that I am ‘aware’ because I live and breathe autism - would it be the same if I didn’t?
No, I wouldn’t.
Of course there’s no way to tell now but I often wonder what my attitude would be if autism wasn’t my religion. I would like to think that I wouldn’t be an a-hole about it. But would I “get” it? I don’t know.
How scary to think if this b.s. awareness campaign continues, we all won’t understand until it’s 1 in 2.
Excellent piece Momma Mac! They might as well call it Autism acceptance month.
Couldn’t agree more! Autism Action Month gets my vote. Another phrase that bothers me is “proud parent of an autistic child” I can think of many adjectives, but proud usually isn’t one of them…
EXCELLENT! I just posted some REALITY autism awareness on my blog!
http://respite4all.wordpress.com/2013/03/01/rectum-ripping-poop/
I too am sick of awareness.
Autism? What’s that?
Awareness programs are Controlled Opposition that is meant to be the Valium for those that have wrapped their brains around the truth. It serves to distract those from the obvious, while funneling millions of $$$ into vacuum that only serves to line the pockets of those charging for treatment. No $$$ in a cure. No $$$ in prevention. Your children are being assaulted, and the White Coats are the tools of the Establishment. You are absolutely spot on !!!
Does the average person making their $5 donation at TJ Maxx know that autistic kids are really sick, or that with the right medical treatment an autistic child might get a lot better, and even recover? No, because that leads us back to the dangerous subject of causation, which leads to the compelling data on vaccines, pesticides, pharmaceuticals and toxicity.
It can be stopped, and those already harmed can make great progress and possibly recover, and for those who have become mature adults without the chance to recover-they still can be helped to have a much better quality of life and to still recover on some level.
THIS would than allow for everything to be aware of what has actually happened, is hapening, and hopefully history would not repeat itself.
Awareness!!! Forget about AWARENESS we need AVOIDANCE of Autism and REVERSAL of Autism!! How do you avoid it? If we knew that we wouldn’t even need the AWARENESS campaign. I’m all for the acceptance of individuals on the spectrum, but what’s the point of being aware if there’s no help out there for that person or the family or acceptance from society. It should be turned into an Autism Action Campaign, but it should be every month and continuous just like the commercials for cigarettes and pregnant women avoiding Rubella that I saw growing up. The Autism Action Campaign should be AVOIDANCE and REVERSAL every month of the year. The Autism Awareness is taking the focus off what’s really going on and it’s meant to make other people feel better that they are doing something to help. The priorities regarding Autism in this country are all screwed up. Yeah Mama Mac we keep walking around in circles and for what?
I think that the only way to see change is to make the change yourself. Why don’t we piggyback on all the “light it up blue’ hype and do a April Autism Action day/month? We could do peaceful demonstrations around the country on the 2nd, educating people on our real struggles. We have time! (??)
How about prevention month?
Prevent autism: Say NO to vaccines.
Nice!
Don’t get me wrong.. I am anti-vaccine… my son will not be getting vaccines. But please stop saying, and thinking, that ALL cases of autism are caused by vaccines. This is why people don’t take anti-vacciners seriously! You can’t say that ALL cases are caused by vaccines…that is simply not true! My son is autistic.. and has never had a single vaccine. And no.. I have not had any vaccines before I got pregnant…or while I was pregnant. not even the flu vaccine. And no, there is no one in my family who is autistic, and no one in my husband’s (that he knows of). So truth be told… no one REALLY knows. I do have a friend whos daughter was “normal”… had a round of shots, went to the ER that night..and was later diagnosed with autism. So yes, I do believe that vaccines CAN cause autism…. just not every case.
Melissa,
We can’t STOP saying “ALL cases of autism are caused by vaccines” because we NEVER said it in the first place. Each and every one of us knows people with autism who have never been vaccinated or who regressed into autism after a different kind of insult, general anesthesia for instance. This piece itself mentions “vaccines, pesticides, pharmaceuticals and toxicity.” Clearly, no one is saying that it’s ALL vaccines.
Well said Mama Mac! We are fully aware. I will never participate in a walk or “light it up blue” or where a puzzle piece or donate. The money goes to the organization, not families. We know full well what happened to our children.
We educate, we share our stories and can so relate when they tell me they have a child/children on the spectrum or family member or friend. It’s everywhere. Fortunately, I see more new parents becoming aware as we educate others and have them do their homework.
Please remove the Facebook popup ad. It is highly annoying. Not everyone likes Facebook.
Excellent post, I totally agree with you.
I am so sick of often being the only one socially who THINKS and DOES things differently while people around me make little or no efforts. I was at a social event recently with a bunch of women and several were rallying the girls to participate in some fight- cancer running event. And the whole thing sounded like fun but I just couldn’t do it - and it really bugs me that because I refused to participate or give money, that I am made to feel like I’m weird for not wanting to help the cause when I spend a disproportionate amount of time and money trying to avoid cancer! I mean even when we got to talking about all the carcinogens in food, wine, water and our clothes etc., they are all still pumped to “run for cancer” which they admitted is doing nothing about the causes of cancer in our environment!
Lately in Europe, everyone is talking about the horse meat scandals but out of dozens and dozens of discussions, there are very few who seem to see that it’s the system in the FOOD INDUSTRY that is the problem, not just this one issue which is just the tip of the iceberg.
If people aren’t motivated to get up off their butts make concrete efforts for things like cancer and food safety which affect us all in serious ways, how are they supposed to DO something about autism?
One thing is for sure, there ain’t going to be any blue lights on around here on April 1st.
LOVE LOVE LOVE this!!!!!!! Who do we see about getting April renamed to “Autism Action Month”?? LET’S DO THIS!!!!!!!!!
DAMN RIGHT! SCREW AWARENESS! I WANT JUSTICE! VIVA, INDEED! ♥
So right.
Outta the park, Mama Mac! Bravo! Viva la Revolution!
One of your points really hit home. I remember never hearing of kids with Autism. Oh, you would see a movie, read a story, or hear of someone way off in another part of the country, but it was so rare it barely registered in your brain.
Now it’s different. I speak the words, “my son has Autism”, and I rarely meet someone that doesn’t say, “oh, my nephew/neighbor/friend’s son/little girl down the street/cousin/fill in the blank with a person they know has Autism” and they go on to tell me their story. I had a guy at the zoo, of all places, ask me what the warning signs were and what did I think about his niece because he was so worried about her (my opinion, seek help, sounds just like my kid at that age, don’t ignore what you are seeing). That scares and saddens me and, honestly, makes me madder than mad (strongest words I use, but you can fill in the blank with the strongest you use). How much longer are we going to allow kids to fall like this before we say “enough”? I have said it, you guys have all said it, but most parents of kids with Autism haven’t much less those outside of “the community”. I say something about Autism on “Awareness Day” because people will listen on those days, usually out of pity. I figure a listening ear for a pathetic reason is still a listening ear. However, I only say something that day because I say something everyday to make others aware. If I didn’t, that one day wouldn’t be enough and I wouldn’t be any better than those listening for pity sake.
Kari, that’s exactly the experience I have had. When I was a kid NO ONE was worrying about a child who was regressing and losing skills he or she had already mastered. Now it’s commonplace. Don’t even begin to tell me this is about “better diagnosis.”
Wow, Mama Mac, you hit the nail on the head with this one! Your logic is impeccable.
Awesome as always Mama Mac <3
“It’s like the fundraising effort where autism families are asked to walk around a track at a local high school. These go on all over the country year after year. I refuse to participate for a number of reasons, but the irony of walking in circles is lost on few.” LOL! I LOVE IT MamaMac! Just LOVE it! <3
My favorite line as well! LOVE IT!
Amen! Well said, couldn’t agree more!