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Are We Done Yet?

Blue doorBy Cathy Jameson

As we draw a close to another autism awareness month, I’ll admit I am not sad that this month is over.  Why?  While looking up the history of the autism awareness campaign and when it started, I discovered that the campaign began in the 1970s.  When I did my first search, I thought I had discovered a typo.  Surely they meant the 90s.  Nope.  Not a typo.  Someone was trying to get people to notice autism two decades earlier.

Lots of us are doing a lot more than notice autism now.  We’ve been sounding alarms about the autism rates and what the disorder has done to our children for what we feel is an eternity.  Obviously awareness hasn’t been enough.  Look at that old rate again.  The rate from 40 years ago.  When it was 1 in 25,000.  Look at all those zeros in that number! Twenty five THOUSAND.  That’s the population of a small town.  It was likely that one person out of an entire community was diagnosed with autism 40 years ago.   That’s not so today; we’re able to pick out a handful of affected kids on one play ground!  

Since the earlier campaigns, I think it’s safe to point out that having awareness didn’t slow, curb or end the autism epidemic.  Proof is in the new numbers.  The autism rates skyrocket as this month’s awareness campaign kicked off.  Just days before April began, the CDC revealed a new rate.  An even higher rate.  Another jaw-dropping-rate-but-let’s-do-nothing-about-it rate.  Granted, we’re being told a different formula and strategy were used to calculate this current number, but the number still screams, “THE AUTISM EPIDEMIC IS GROWING, AND IT’S GROWING AT AN ALARMING RATE.”  What response did we get in reply? 

Ho hum, it’s just autism.

This autism awareness month, which other groups chose to celebrate and embrace, saw an announcement that autism is affecting 1 in 50 school-age children.  1 out of 50.  1 out of 50 who struggle with speech, social skills or personal care.  1 out of 50 who are dependent on another human to be fed, clothed and bathed.  1 out of 50 who require intense intervention and therapy that insurance companies refuse to cover.  1 out of 50 who may never live on their own or feel independence as previous generations have.   I find nothing to celebrate, nor embrace in these numbers and what it means for so many children’s futures.


It’s unfortunate that the people who do need to wake up to the alarms we’ve been blaring cannot do.  They can’t do that while they have their ears covered to what we’ve been saying for so long now.  They need to rip off the blinders that they are wearing instead of turning away from us while acting oblivious to what is happening in plain sight.  They need to feel the grip that autism has on us—on our emotions, on us as caretaker and on our pocketbooks as it drains us day in and day out. 

Sadly, no one who does need to see what we have witnessed is willing to take awareness a step further.  But, no one wants to admit that this is tragic news.  No one cares that a generation of children will grow up with a host of struggles that will prevent them from truly being dependent adults.  Being aware just doesn’t work unless the goal was to deflect how traumatic autism is.

April will be over in just a few days.  Like last year, and for so many years before that, awareness of autism will simmer down and eventually be whisked under the rug.  We’ll go back to our fight, and the rest of the world will show little interest in a plight that is quickly taking over so many children’s childhoods.  Only when the media deems a ridiculous study worthwhile will autism be broadcasted across the land again.  We’ll hear about this “mysterious” disorder again, but it won’t be useful news.  You’ll recognize that right away.  The story will make the headlines, but it will be anything but practical.  You know these types of stories well.  They are the ones full of bunk and funded by wasted research dollars.  It’ll claim that a kid became autistic because his mom was well endowed or that his dad was older than the hills and that they all lived super close to a highway.  You’ll want to yell at the TV when you hear the reports because they are so absurd, and because instead of looking at environmental factors that contributed to our children’s autism, gobs of money went to outlandish research that created useless studies that continuously blame the parents. 

Here’s the good news.  If you are the type to keep a countdown, depending upon when you read this, we have about 48 hours left in this month.  T-minus two days to go back to focusing on autism ACTION 24/7, to give our children everything they need to work through the difficulties they encounter, and to concentrate on the efforts of the autism community that promises to never ever give up.  So, say bye-bye to April.  Bye-bye to awareness.  Bye-bye to blue lights and to 30 days of frustration.   I, like many others, have no time for any of that and can’t wait to for this awareness diversion to be done.  Too much else needs our attention. 

See ya never, autism awareness.  Don’t let the door kick you in the rear on your way out. 
Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

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Dr. Nora,
You are probably aware that most Americans had never heard of autism until Dustin Hoffman was in the movie Rainman. I know I hadn't, and I remember thinking that it would be the worst thing in the world to have an autistic child. At that time most doctors had never heard of it either, and were told that it was unlikely that they'd ever see an autistic patient in their entire careers. Of course we now realize that it started in the 1930s and was caused at that time by the mercury in the diphtheria vaccine, and occurred at the rate of two or three per ten thousand for several decades. It may be that that figure is from the DPT era, which greatly increased the number of children exposed to vaccine toxins. The book Age of Autism details several epidemiological studies which found that rate in the populations studied in the 1950s and '60s. But for most people, that is like saying two or three in every ten thousand people have lymphadenopathy. Could be, but it doesn't mean anything in making a decision about vaccination, because that rate seems very low and distant to most people's everyday lives. Now it's different.

My daughter reacted to the criminal hep-B vax at birth, given without permission, with encephalitis. She'll be thirteen on Sunday. She has never told me or anyone else anything that she thought was interesting. Nothing ever about anything that happened at school. Nothing about any child or teacher at school. Nothing about anything, ever. She can speak, and say things like What's for dinner? After years of effort and coercion, she now says Hi, how are you? when greeting friends and neighbors (inconsistently). After much more effort and coercion, she now asks What did you do today? as a follow-up question. After more effort and coercion, she now asks two follow-up questions starting with Who, what, when, where, why, or how, but her questions are usually not very appropriate, and the answers are in one ear and out the other. For some reason, she thinks it's appropriate to greet girls she's known for six years by asking What's your name? when she sees them. I'm now drilling her on how to talk to someone new, since she'll be starting middle school in the fall (most of the time in a self-contained autism class, she's had speech therapy for seven years at school, but is still extremely low verbal. I can't tell that all these years of speech therapy have made any difference at all.). I'm training her to run down a list to herself, Name, age (if student, not adult), school, work, where they live, fun and family members. I asked what she'd say if they asked her the fun questions: What do you like to read? She said, I don't like books, I don't read. What music do you like to listen to? I don't listen to music. What movies do you like? I don't watch any movies. What sports do you like? I don't like any sports. Where do you like to go? I don't like to go anywhere.

I've told her that that doesn't let anyone get to know her, or lead to any exchange of personal information that might lead to friendship. It puts her sort of at the level of a household pet: people feed her, and that's all she asks for. She just sits around at home without doing anything at all when we're not homeschooling or doing piano lessons. Nothing in her hands, not looking at anything. I suggest doing Puzzlemania magazines, look at American Girl magazine, color or draw, do puzzles, look at Youtube, watch videos, listen to music, help me cook or clean. She is always completely uninterested in anything. My understanding is that this is classical autism, totally enclosed in herself, with absolutely no interest in the outside world. Elaine Hill, is it not a problem that there are hundreds of thousands of kids like this now? What kind of job do you think she can have that would allow her to be independent ten years from now?

Elaine Hill,
"Autism is so common" well that is the problem,the numbers are abnormally high,the numbers are also increasing because NOTHING
have changed in the last forty years - as to look into the root causes of this increase.I have to agree with Michelle NE,you do have a bad attitude.
If you think carefully,it took more than fifty years for the company who produced Thalidomide to "apologize".The parents do not tolerate and feel good about this on-going and increasing epidemic.I do not want to wait fifty years to have changes and improvements in our children's lives.It would be a really good experience for you,to volunteer your time and help out a few families who struggle with autism on the daily basis and truly understand what issues these children and families need to deal with.Walk in their shoes
before you criticize them.

Elaine, I can't imagine why anyone would come here and act like they know more about autism than autism parents who live with autism 24/7. Especially knowing some parents have more than one effected child. It takes a lot of nerve to criticize us and shows incredible arrogance.

Elaine Hill, unfortunately your assertion that the increase in cases is due to high functioning kids now being found because of "better awareness/diagnosis" is a complete baldfaced untruth. As last year's study in New Jersey found:

"A new study has found that rates of autism have increased among children. Autism Study Investigator Walter Zahorodny, of UMDNJ, called it “a health crisis” because of the number of children and families affected.

“To comment on the argument that we’re only picking up on the borderline or marginally affected children, that’s really not true,” Zahorodny said. “From our data, it’s clear that approximately 80 percent of the cases are children with autistic disorder, which is the more severe type of autism.”

A huge increase, 80% of which is at the SEVERE end of the spectrum. That is the reality on the ground. That is the truth that parents are experiencing every day. That is the fact that will bankrupt public services in the future. And the heartbreaking thing is that it could be prevented, if only public health officials would stop spouting happy platitudes about better awareness and start investigating what toxins are decimating generations of children.

Elaine,
Everyone now can spot autistic kids a mile away, on every playground, in every supermarket. My daughter is low verbal, and every single person in the world, regardless of what language they speak, realizes she has autism as soon as she opens her mouth. These kids were not here thirty years ago, but wow, are they here now!

I have to admit that I think that it is very unlikely that Elaine Hill, Special Autism Advisor to the UK Department of Health, would make an impromptu appearance here but both "Elaine" and "Hill" are common names and their conjunction is probably not all that rare (like "John" and "Stone").

Oh darn I missed a few words in my comment. It should have read:

If this is you, how did you come to be the Specialist Advisor for Autism at the UK Department of Health?

I didn't mean to imply that it is has been verified that is who you are.

Apologies if you are not that Elaine Hill.

Elaine,

"ASD is so common that most of the public knows a child or adult with ASD personally. And the public knows that the severe cases are now in the minority."

And this is OK? You state it so nonchalantly. Regardless of whether of how a person if affected, they still struggle. They still are affected by the medical issues that led to their autism and social problems that will make it difficult to assimilate. Your attitude is frightening and unsettling. This is the prevalent attitude in our medical system and government and why no one is doing anything. Yes, well even those "mildly" affected will still need help. It isn't until it hits everyone in the wallet, that people will want to take a true interest in stopping what is happening to a generation of children and future adults.

Elaine do you have personal experience with autism? How did you come to be the Specialist Advisor for Autism at the Department of Health? Specifically, as it relates to autism, what are your qualifications?

Elaine Hill, you say that, "most of the increase in the number of children diagnosed with ASD is due to children who are relatively high functioning and would have been missed without a lot of autism awareness," and that, "the public knows that the severe cases are now in the minority," without providing anything to back up these assertions.

Elaine, you also say, "When you insist that all children with autism are nonverbal and fecal smearing, and always dependent on caregivers, you lose all credibility." I haven't heard anyone saying that ALL children with autism are anything.

Elaine a quick google search of "Elaine Hill Autism" pulls up some interesting hits. Are you a National Non-American public health/PR professional who "counsels" others about autism? If so - God help everyone with whom you come into contact.

Elaine,

Itis you who is losing credibility by making assumptions that we're talking about low functioning non verbal kids. Well, my son who is age 9, is not nonverbal or low functioning. He can speak, he can dress himself, he can write and he can read (below grade level), use the computer etc. He would be considered to have mild to moderate autism or features of autism. Appearance wise, his autism is not obvious. He can pass for typical. He also fecal smears on occassion most recently the other night and even my mother's house at Easter much to horror of my family. I was able to keep this behavior a secret until that Easter episode, now the secret is out. Fecal smearing is a sensory seeking behavior and a way to relieve stress. Kids on the spectrum present with a wide rage of behaviors even the verbal, high functioning, sensory seeking ones.

Hi again Elaine,

Here is the actual link to the article that I quoted.

http://www.child-autism-parent-cafe.com/adults-with-autism.html

Greg

Hi Elaine,

Here are some recent stats from the UK's National Autistic Society to help you gain a better perspective of how autistics, including those who are high functioning, are really faring in society.

Cheers, Greg

"According to a National Autistic Society survey of over 450 children and adults with autism, an astonishing 70% of adults with autism are unable to live independently. Of these individuals, 49% live with family members, creating a huge financial burden on aging parents, and 32% livle in residential care facilities, which offer little or no privacy, autonomy, or stimulation.

Only 3% of adults with autism live fully independently. In terms of employment, only 6% of adults hold paid, full-time jobs. Regarding mental health, over half of adults with autism have been diagnosed with depression some time in their adult life while 11% say they have suffered a "nervous breakdown."

And even though the majority of adults surveyed had participated in at least two autism interventions in childhood, 65% continue having difficulty making friends. Of teens surveyed, 74% stated that they had difficulty making friends. Of children under 13 years old, 31% participated in no social activities at all.

Clearly this data shows the burden on quality of life for adults with autism, issues such as independence, self-determination, employment, mental health, social support, and meaningful relationships are virtually ignored when planning treatments, assessing treatment outcomes, or evaluating an overall program’s effectiveness.

Adults with autism are in need of treatment programs which focus on improving family life, self-perception, self-esteem, confidence, ability to compete in employment opportunities, the ability to live in the least restrictive environment, ability to decrease depression, anxiety, and other mental health concerns, for more successful outcomes."

Good Grief Elaine;
I don't think we were expecting our kids to be up in their rooms in their mid 20s lining up action figure dolls. Yeah, smart enough to get an associate degree, a B.S or B.A degree, but without the will to be out there -- well it darn sure ain't normal, but I guess we can get use to it.

Cathy, thank you for reminding us that April is about to end. As long as the medical community and the government keep their lips sealed on the harm done to babies and children by mercury there will be nothing to celebrate in April or any month for that matter.

Good grief. I never said that children with severe autism don't exist, and I don't doubt that some of you do have children on the severe end of the spectrum. And I don't doubt that when children with ASD do well it is because of a lot of hard work on their part, and their parents' part. I wish to point out though, that most of the increase in the number of children diagnosed with ASD is due to children who are relatively high functioning and would have been missed without a lot of autism awareness.

When you insist that all children with autism are nonverbal and fecal smearing, and always dependent on caregivers, you lose all credibility. ASD is so common that most of the public knows a child or adult with ASD personally. And the public knows that the severe cases are now in the minority.

Elaine, as a parent of a child who is doing "really well" your response is offensive. My child is doing "really well" because of all the hard work, time, effort, therapies (speech, OT, PT, DTT, ABA, etc., etc.) and perseverance on my part and his - not to mention a TON of money and still on going interventions (therapies). Every aspect of his life is micro-managed and so now he "presents well," except on the days his medical issues crop up (like today, his mito-chondrial related fatigue sent him to the health office for a nap at SCHOOL). I am proud of my child and all he has accomplished and how far he has come, but I have many doctors, therapists and like-minded parents who have helped us reach this point. And I'm angry, angry that his childhood was largely lost trying to develop skills that come naturally to everyone else. Angry that he became so very ill after his twelve month "well baby" exam with shots (MMRV) and spent the next FOUR YEARS in chronic pain until I finally healed his ruined gut. Angry that instead of soccer games we have speech, instead of Boy Scouts
we've had social skills groups. So, when you look at my child and see a child that is doing "fine" take a moment to remember all the HARD WORK that got him there and remember it's a delicate balance that keeps him there and it takes tons of ongoing maintenance to keep him "presenting
well."

Wow, Elaine...do the most severe kids really not exist, or is the general public simply not aware that they exist because they are STUCK INSIDE being "dependent on another human to be fed, clothed and bathed"??

If you really think most kids are doing relatively well, c'mon over to my son's autism school some time. It's filled to overflowing with kids who are so damaged that they need two -- not one -- staff members just to help them get from the school bus to the frickin' front door of the school. Oh, and incidentally, the majority of people in our mid-size city are not even aware that this school (and its student body) exists, nor are they aware that a new school is being built just to accomodate this growing population who can't attend regular public school. And they are also not aware that this newer school will be built in the most poverty-stricken, gang infested part of the city with a crime rate that makes Detroit look like Mayberry.

Do our severely affected kids not exist or does society just want to pretend they don't exist?

Elaine,

Just curious...is the comment you left a reflection of your personal experience as a parent, or are you a paid health advisor tasked to post negative comments here on AofA? Either way, thanks for the feedback. It gives more of us a chance to tell our children's stories, to speak the truth and to uncover your motives.

Cat Jameson

Elaine, I think that maybe you meant to say "The majority of kids WHO I KNOW are not how you describe them." Do not presume to speak for my son or anyone else here. Also, I think the public is very upset and concerned. They just have no idea what to do. Talk to any pregnant Mom-to-be...they are terrified. And I have yet to hear a single one say, "I'm not worried. Most kids with Autism are doing relatively well. Not a big deal."

Dang Elaine. What rock are you living under? You can come to my house and help anytime. ~Signed, a parent of the 40%

Elaine, You say are kids are "doing relatively well". If think a nine year old child smearing feces on himself and the floor is "doing well" then I shutter to think what your definition of not doing well is...geeesh! btw where can I buy a pair of those rose colored glasses?

Wow, Elaine. I wish I lived where you do because of the 500 or so autism families I know and speak with, many who have multiple children with ASD, all have incredibly sick, disabled children. Their children not only require intense, 24hr care, but they also require an army of medical specialists to treat the myriad of complicated medical problems that go along with autism. Even the willfully ignorant AAP is finally having to admit these kids are sick. Really sick. And frankly, had they actually done their jobs and provided the medical care for these kids that they provide to neurotypical kids instead of ignoring them because "oh, that's just autism", they would have had to admit it ages ago.

Elaine, that is the most misguided comment I have ever heard. You don't think autism is a real problem? Kids are doing relatively well? I recommend you visit your local schools and talk to some teachers. Our school systems are BUCKLING under the tremendous weight of having to care for so many kids with autism. They simply don't know what to do with them. 40% of kids with autism cannot speak at all. 40%!!! That is not "doing relatively well". My child, as well as the children of most of my autism mom friends, are not "doing relatively well". They struggle with chronic illnesses such as bowel issues, seizures, etc; they have PANDAS, they self-injure or are aggressive, and many if not most do not have the verbal skills to make a friend. Elaine, you are doing a tremendous disservice to our kids by trying to gloss over what is happening here. If you think our kids are "doing relatively well", you might want to meet some more kids who are struggling with this diagnosis. My son self-injures when he has pain. He is not participate in back and forth conversation. He is eleven. Please don't try to sweep him under the rug. There are many more kids just like him. We are fighting for them here. The world needs to understand what is happening to them. His problems are real and very serious.

You are fighting a losing battle. The majority of kids with autism are NOT how you describe them. The public is not upset because autism is so common that they know a child with autism and they can see with their own eyes that the kids are doing relatively well. Yes, they do have areas where they struggle, but most kids with autism are not "dependent on another human to be fed, clothed and bathed".

This picture speaks a thousand word.They continue to put children at risk of severe neurological damage and severely reduce their quality of life. We have to get political,we have to walk the streets with our disabled children,we have to continue to fight and open the eyes of others,we have to protect the future.We must have independent scientists and researchers,we must have independent testing facilities.How many years it will take to see some positive changes,sometimes
I wonder???

I was aware of autism in the 1970s. An article, Brain Damage by Asphyxia at birth in the October 1969 issue of the Scientific American, had pictures of damage in the auditory pathway of the brainstem. Pediatricians firmly rebuffed my suggestion that this might explain my son Conrad’s speech problems. So, I enrolled in a graduate program to learn about language and the brain from experts in the field.

In 1975 my paper on echolalic speech was published. The abstract can be found at http://www.ncbi.nlm.nih.gov/pubmed/812450. This, and the Scientific American article are now lost in the dustbin of forgotten history. Brain impairments underlying developmental language disorder should have been understood decades ago.

Instead, in the mid 1980s the obstetric profession adopted immediate clamping of the umbilical cord at birth, whether or not the baby had begun breathing. Earlier textbooks all taught that the cord should cease pulsating before clamping, i.e. blood flow to the placenta should cease before severing the cord.

Conrad required resuscitation, and several minutes passed before I heard his first weak cry. We were apprehensive, but he met all developmental milestones. Even his language development appeared to be precocious, but it was all verbatim recitations of things he heard in one context and used badly out of context in new situations.

Our federally appointed committee (the IACC) has refused since 2003 to discuss umbilical cord clamping, or the vulnerability of the auditory system to oxygen insufficiency and toxic substances. I will continue to try to be heard. Vaccines and other unhealthy interventions also need to be openly discussed. We need to keep insisting on this.

Thank you Cathy, and Anne.

Actively
Preventing
Recognizing
Immunizing
Link

Autism dis-Awareness Month!

I was surprised to read that you thought awareness began in the '90's. I was aware of and working with people with autism in the very early '70's.

Cathy, this is a brilliant summary of just how things have been. No one is interested in stopping this disaster because we'd have admit what's causing it. Covering it up is all that matters. And the way to do that is....

1. Have medical groups and health officials unconcerned about autism.

2. Congratulate doctors for all their better diagnosing.

3. Have the media show autistic kids looking like typical and happy so we'll believe that they've always been here.

4. Convince parents to only ask for awareness and invent a cute logo like a puzzle piece to remind everyone that we really don't have any answers.

5. Start a worldwide effort to recognize autism as an acceptable part of childhood and only call for services.

6. Blame bad genes, old parents, old grandparents, moms who drink, smoke, take anti-depressants, and get fat----always lay the blame on the parents, preferably the mom.

7. Ignore the obvious---like the kids who suddenly get sick, lose learned skills and regress into autism following vaccination.

8. Have lots of busywork like blue lights, bowling for autism, and endless walks in matching T-shirts.

9. Have a official sounding group created by Congress that pretends to care about autism yet in reality doesn't help a single child.

Personally, I'm so glad April is ending. The real title should be "April--Autism Cover-up Month."

Anne Dachel, Media

"Autism Awareness Month" is nothing more than a pat on the head to send us on our way. What we need is "Public Health and Media Integrity Month."

How to reframe the concept of blue lights?

A blue light on a front porch is a concrete, physical, advertisement showing which of your neighbors is being misinformed.

These are the ones to whom you should mail a brochure, or leave one on their curb, informing them of the facts.

Add a final suggestion to the brochure - request that they participate in a better campaign next year. Light up their porch with a green light instead, signifying they now know more about autism and are ready to move forward into solutions, done with awareness: green for go, as in no longer stuck in place due to a misplaced stoplight.

If there was autism awareness back in 1970 - then you can bet it was more than 1 out of 25,000. The subject was already coming up in classes at the Univerisities and professors already had those pat answers they still use today.

Near as I can figure it -- the early to mid 80s it was closer to 1 out of 350.
That was/is how the game was/is played - with 8 year olds.

"The Man" has made a mistake though -- the results of a vaccine brain injury got all classified under a big umbrella of autism.
Thus a label that parents could UNIT under.

A mistake that they mean to soon fix.

Hey, that's a good point, itainteasy, I never noticed that. 1 in 50 is a suspiciously round number. Could be anything, couldn't it?


I suspect the CDC put out the informal number of 1:50 because the numbers they are going to reveal (when they get the nerve) is much lower than that!

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