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Autistic: Different vs. Disabled and Media Portrayal

Good bad ugly
By Anne Dachel

Recently I came across the story, "Being different: The marvels of the autistic world," by Gerry Loughran.  (HERE)

I thought immediately about the countless parents I know in the autism community.  Autism has destroyed their dreams, bankrupted their savings, and shattered their lives.  Who would dare to trivialize their suffering with a title like that?  Evidently Gerry Loughran would.

From his photo, Loughran looks like a man at least in his sixties and in this piece he reflected on the children he knew growing up.  And guess what?  He now thinks that some of them probably had high functioning autism.  Loughran described the funny quirks and obsessive behaviors that made them stand out from the other kids.  He brought up the recent big news out of Britain: A survey found that one percent of British adults have autism--the same as the rate for children in the U.S.  These were adults who gave certain answers in response to questions about social habits, so they’re clearly higher functioning. 

This of course, is good news.  We can all relax.  For those who might be concerned because it seems like a lot of kids today are labeled autistic, it's more proof that autism is nothing new.  If we just think about it, any of us can pick out the kids who might have been autistic, albeit undiagnosed, back when we were in school. 

Loughran and all the rest of the people promoting this deception have one goal: Make autism go away.  I always go back to the REALLY BIG LIE ABOUT AUTISM--that there's been no real increase.  If that's true, then autism is nothing to worry about.  Medical science just gets better and better.  Aren't we lucky to be living in the 21st Century? 

There is a concerted effort by medical organizations and health officials to make all the sick kids the NEW NORMAL.  I work in a number of schools in my area and it's obvious that the idea is catching on.  Kids with medical conditions like asthma, severe allergies, seizure disorders, and diabetes are common.  Kids with learning problems and developmental disorders are standard in schools today. 

And autism is more of the same.  The question for schools today isn't, do any kids have autism?  Instead, it's, which kids have autism?

We're making autism into something acceptable, just a part of childhood.  A recent study out of South Korea found that one in 38 kids have autism.  That's a whole lot more than the one in 100 in the U.S., but the researchers doing the study and autism experts here were quick to say that it's just more of the greater awareness we're so used to.  The kids they found in Korea were the high functioning ones who have the subtle behaviors that indicate problems with social interaction.  Therefore, there's nothing alarming about a rate of autism of almost three percent of children.  Gerry Loughran likes the idea that more and more of us have an autism label.  He wrote,  "I suspect we are all on the spectrum somewhere, just being human in our own slightly nutty way."

What I see happening is one huge distortion of the term AUTISM.  Clearly, if we label enough people AUTISTIC, the word will lose all meaning.  In addition, there’s a major effort to ignore the kids with classic, undeniable autism.  These are the kids we can easily pick out in the supermarket or in the special ed room.  They're the ones who are throwing huge tantrums and screaming uncontrollably.  They're flapping their hands and rocking.  They're wearing helmets because they bang their heads endlessly.

I'd like to ask Loughran how many kids, back when he was in school, were non-verbal and in diapers as teenagers.  How many were healthy as toddlers but who suddenly got sick and mysteriously lost learned skills so that by the time they went to school, they were clearly disabled?  How many aides accompanied kids to class when he was young?  How many special ed rooms were there in his school?

The public is being led to believe that autism is something much different from what it really is.  Hidden from sight are the hundreds of thousands kids out there who are struggling with severe autism.  These are the children we never see in the news reports on autism awareness.  They display frightening symptoms that are not so easy to dismiss. 

MORE ON HIGH FUNCTIONING AUTISM IN S KOREA

May 23 Medical News Today: (HERE) reported on the Korean study.  “This study is important because there has been concern about reports over the past four decades indicating that ASD prevalence is increasing. Some have been concerned about new causes of the disorder in the environment, however, the researchers suggest that a variety of factors contribute to the growing prevalence, not the least of which is the more thorough case finding noted in this study.”

MORE DEVELOPMENTALLY DISABILITIED CHILDREN IN THE U.S.

Not only are we lumping all levels of autism together, including top of the spectrum individuals with Asperger’s Syndrome, now we’re making a big combo of all developmental problems!  It’s a clever way to insure that no one knows anything for sure. 

Here in the U.S., developmental problems are on the rise again but it’s no cause for worry.  This includes not only autism, but also  ADHD and a host of learning disorders. Ten million U.S. children are affected.  That’s 1.8 million more children than we reported 10 years ago.  USA TODAY had the story, (USA Today 1 in 6) and so did CNN,(CNN Autism and ADHD) along with CBS. (HERE)

and WEBMD (HERE).  They all had the same sources cited and similar versions of denial.

CNN showed no real concern about why this is happening and Alison Schonwald of Children's Hospital Boston used the phrase, “whatever the cause of the increase," it’s important to have kids screened.  Schonwald said, ‘It's great to diagnose them early,’ so they can receive all that early intervention.  Sheree Boulet of the Centers for Disease Control and Prevention admitted, ’We don't know for sure why the increase happened,’ at the same time she reminded everyone that there’s ‘greater awareness about the conditions among parents.’ 

In USA TODAY Schonwald attributed the increase to the fact that “in the past, many children who had problems learning or talking would have been dismissed as odd.  Today, these children are more likely to be diagnosed with a problem. Parents may push for an official diagnosis so their children can receive medication, special education or other services.” 

WEBMD reported, “Most of the increase occurred in autism and ADHD, but it is not clear if the incidence of these disorders is substantially rising or if the numbers reflect an increased emphasis on early diagnosis and treatment, greater awareness of the conditions by parents and teachers, and a broadening of the diagnostic criteria.

“Boulet says the fact that more women are having babies later in life and more babies are being born preterm may be contributing to the rise.”

TIME Magazine talked about it (HERE).  “The most significant increases were seen with autism and ADHD. Autism rates nearly quadrupled over the study period, from 0.19% of children in 1997-99 to 0.74% in 2006-08. But, overall, ADHD accounted for the greatest number of developmental disability cases; rates rose by 33%, from 5.7% of children in 1997-99 to 7.6% by 2008.”

And why did it all happen?  TIME: “The reasons for the increases are not clear, but the researchers suggest they may be due in part to increases in preterm birth and the older age of parents. …Other key reasons for increases in diagnosis, particularly with autism, are better screening, more awareness and less stigma, and increased vigilance among parents, teachers and pediatricians, the researchers said.”

The LA Times ran the headline, ADHD, autism fuel rise in developmental disabilities, but is the increase real? (HERE).  Every effort is made by the Times to convince us that it isn’t.

“Experts said that physicians may now be more likely to diagnose ADHD for children who, in the past, might have been dismissed simply as slow or unruly. Such a diagnosis allows treatment of the children with drugs such as Ritalin, which can reduce misbehavior in the classroom -- but which can also make children less responsive.

“Some of the increase, however, may be due to advancing medical technology. Parents are increasingly being given assistance to have children at older ages, which may increase the risk of problems, and growing numbers of children are being born through assisted reproduction technology, which also involves risks. Better technology is also increasing the survival of children born prematurely, and such children have a much higher risk of developing developmental problems.”

The Times had a close up of tiny premature baby with the caption, “Premature birth is one of the most common causes of developmental disabilities.”  There you have it, “better technology” is linked to autism.

HOW MUCH LONGER WILL BEFORE WE EXPOSE THE REALLY BIG LIE?

We don't really get to hear much from parents about their concerns.  And when we do, the lie is always there, as in the recent ABC7 story from Los Angeles. (HERE)

"New research is coming out of a major autism conference. One of the biggest concerns parents who have kids with autism is what will happen to them when they become adults. With so many more kids being diagnosed, scientists are looking to the future and what's in store for these individuals."

ABC7 told about a nurse, Kathryn Smith, who works with families of autistic children.  “Lately she's been getting a lot of calls from parents who have older teens transitioning into adulthood. 'Typically families are looking for services,' said Smith, who works at the Boone Fetter Clinic at Children's Hospital Los Angeles. There aren't very many."

ABC7 reported, "Researchers also found adults on the autism spectrum end up relying on the public service system and family for most of their lives."

Smith believes that adults with autism represent a problem. 'Given the increasing numbers of individuals with autism, policymakers really need to take a look at how to serve these people better.’

Although ABC7 didn't bother to cite the autism rate of one percent of children or give us any estimate of the nearly one million children out there with autism, they acknowledge that there's a problem.  And regardless of the fact that the word "crisis" isn't used in the story, there's going to be a huge demand for services for autistic adults, and there's nothing there for them now.

Despite what she sees happening, Nurse Smith expressed no alarm nor did she give us any explanation for why it’s happening.

I've noticed over the years that the TV networks along with their big affiliates and major papers don't like to talk about approaching tidal wave of adult autism.  They're always there with the latest study showing no real increase in autism, the new research hunting down those elusive genetic mutations causing autism, and the latest denial that vaccines are linked to autism.  

There seems to be two official versions regarding the rate of autism.  One still denies any real increase and the other admits that the numbers are going up because of environmental factors.  Both claims are adamant that vaccines aren’t involved.  In neither case is anyone really alarmed.  They’re happy to still call a autism a mystery.

However, it's the state and local news stories that give us the true picture of what's happening.  I found one on May 15 from the Kennebec Journal in Augusta, Maine.  The title was "Autism presents greater challenges after graduation.” Don't let that title fool you, autism presents a lot more than "challenges."  Reporter John Richardson wrote about what autism is really doing to our country.

"The generation of children who experienced the first wave of an ongoing autism epidemic is now reaching adulthood. Public support programs that used to provide continuing education and care for virtually all adults with development disabilities now have hundreds of Mainers on waiting lists that are expected to keep growing.

"The young adults range from the most severely disabled who need 24-hour residential care to those with much milder disabilities who, with continuing support, could become independent wage-earners.”

He described one 20 year old young man:

"He is nonverbal, needs consistent supervision and can become anxious and difficult to control when his routine changes too much. But, after five years of individualized teaching at the Morrison Center, a Scarborough-based nonprofit agency, he is comfortable and cheerful, has learned to communicate and even works one day a week helping to clean and set up a Portland pub."

His mother is worried because at age 21 all school related services end, this man and everyone else his age, will have "nowhere to go but home."

Another mother said, 'It's so overwhelming with autism that you don't think about the future. The future is all of the sudden when they graduate. ...It is extremely stressful. A lot of times the care falls on one of or both of the parents and if they are not prepared for that, all hell breaks loose.'

Richardson also reported, "Maine school districts often hire educational technicians and other staff to work individually with students with autism within mainstream schools. But, in cases where students are disruptive or cannot stay in their local school, their districts pay tuition -- about $50,000 or more a year -- to special private schools.

"Now, however, those students with autism are graduating from high school in steadily increasing numbers.

"Four years ago, a high school graduate with autism in Maine could smoothly transition into publicly funded adult services, whether residential care or day programs. Today, families have been on waiting lists for years."

Loughran's feel good piece about “the marvels” of autism has little in common with the dire situation that's developing in Maine and across this country.  In the real world, kids are getting sicker and sicker.  It’s the world that’s not going away, no matter what the experts and main stream media try to tell us.

 --

Anne Dachel is Media Editor of Age of Autism.

Comments

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I AM SO SICK OF AL THE LIES OF AUTISM, I WISH IT WOULD JUST STOP, AND GET THESE CHILDREN SOME HELP. ITS TERRIBLE TO LEAVE THEM WITH NO HELP AND REALLY NO FUTHURE, IT MAKES ME SICK.TO SEE THIS IN THIS COUNTRY. I KNOW THEY MEANING (THE GOVERMENT.)KNOWS WHATS WRONG AND HOW TO FIX IT.WHEN ARE THEY GOING TO COME CLEAN?THESE CHILDREN NEED HELP.AUTISM HAS BECOME BIG BUSINESS. THINK ABOUT IT.

It is not the case that the present state of affairs in which there is an increasing number of children with autism will never get better, but it's going to require that more parents start saying no to vaccines. It's not a question of going back to the vaccine schedule of the '80s, as I've seen some propose. That would mean keeping all the autism caused by the DTP or DTaP and the MMR. There is no safe vaccine schedule, but there are other answers to the problem of how to handle the different diseases.

Well all of this just goes on and on doesn't it? When I met the Geiers father and son at the November 2002 Vaccine Information Conference in Washington USA I said I had searched all the evidence I could find, first hand, media, web, conferences etc., to find unvaccinated autistic people. Only six years at that time after I started in 1996. A further nine years have elapsed and they are still not to be found. The Geiers thought my ad hoc research to be flaky but it didn't stop them looking at VAERS followed by Dan Olmsted looking at the Amish. We still haven't found these elusive kids and somehow the industry/medical establishment have suppressed this void until it doesn't seem to count. It does and until we have a respectable review of vaccinated vs unvaccinated outcomes we're not going to be able to kill this claim that vaccination is neutral to autism.

Tony Bateson, Cheltenham, Glos UK.

This wave of vaccine damage isn't even 30 years old, so any adult in their mid forties has no excuse for swallowing this tripe. They would have gone through school in the 70's and 80's, and should be able to REMEMBER a time when there were no food allergies, there was no asthma , diabetes was something that your grandmother had, and your understanding of autism came form a movie called Rain Man.

I knew vaccines caused my son autism, but it still took me months to identify them as the cause. And even when I did, the realization seemed to shake me to the core. It was the opposite of everything I’d ever read or been taught, and as such was something that I didn't want to believe. So to prove myself wrong, I searched for scientific proof that vaccines are safe and effective. That search started over 5 years ago, and I’m still looking for scientific proof of any kind, to show that any vaccine is safe and effective.

Unfortunately, the perpetrators of the crime are as rich as they are ruthless. They own the media, so they have an advantage that we may never be able to overcome. They will ensure that there’s always a stream of rhetoric like this, since their aim is to win with volume, not quality. They know there’s no science, and they also know that we’re figuring it out. So their only real weapon is to construct confusion, with the sole intent of maintaining doubt in the collective consciousness.

Might sound simple, but these guys have it down to a science.

Autism? Or autisms? I am reading the Age of Autism and it sheds a lot of light about how Autism has come about. But I would like to throw out a few ideas of my own: and yes, I was diagnosed autistic in the 50's (one of the beginning crowd you might say, while I lived in Norfolk, Va....I was 18 mos. ) Now, I made it through school. Social skills lacking, articulation not so good till I went to college speech therapy, but I made it, finally, and now teach kids with ID and Autism. Developmental Delayed is no longer a term....we have to have a diagnosis, even if it is the wrong one. I can tell you my student, M, is autistic, but the school psychologist says ID. Matter of opinion....but I want you to all think about our schools and how they teach. Why would so many children be labeled developmentally delayed? Are they really delayed? Or are they just not ready for constant testing in Kindergarten? School has changed. Now, we test in PreK. We play.....rarely. Playgrounds are low priority. Tests rule the districts. So, if you were 6 and you liked dinosaurs, passionately, and your teacher never even told a story about dinosaurs because it isn't part of the pacing guide, would you not be different? We force things onto our kids that we weren't learning till 3rd grade....yes, in Calif., the New Math called it "Sets and Numbers". It is Kindergarten and First Grade now, yet the kids are still kids. Even though they are more techno savvy, they are still kids. They still love to run and jump and play and burn your ear with tales of dinos and cars and fairies, etc. Oh, but those things are not part of the curriculum. Teachers aren't supposed to teach what interests the children. So, some of them curl up in a corner, afraid of the world, the world that doesn't want their voice.

I haven't had an autistic kid yet who didn't get the toilet thing after hitting 4th grade. By the way, please, never call them diapers! That is a disgrace. If a child doesn't quite get it yet, they use disposable underwear. Word appropriate. So, what? They will eventually....be patient.

Lots of adults with all kinds of autisms. There are many kinds of cancers, many kinds of muscle disease,......and yes, many kinds of autisms. Some get better than others.....There are lots of things to help these kids and adults. And some of us do it ourselves....we just keep trying to do better. At 56, my psychologist has diagnosed me as Mild Asperger's now. I have been through Tourette syndrome and tests at NIH. I have been through TMJ. I have lost jobs. I voice my opinions and I am not popular. I live alone with only my daughter, for now. My family has abandoned me. But I have the kids. The boys. My philosophy is Reggio-centered. We need more schools to stand up and refuse the government way. They need to stop the race and return to real learning.

One more thing, don't do Ritalin. Try L-theanine. It works.

One way to combat the nonsense is to make some noise. If you and your children with autism can handle some time in the public eye, it can be very effective for people in public places to experience autism.

At my pool there is a non-verbal teenage boy who makes very loud noises that everyone can hear. I love that his mom or caregiver brings him. Everyone at the pool gets a dose of reality of autism.

Maybe if there are locally coordinated "Let's Make Some Noise" public outings then there might be media coverage to help get the message across that, no, as a matter of fact autism has not always been a part of life. It's different, it's impossible to miss and this is what it looks and sounds like.

Sorry if you can't enjoy your quiet dinner or time wherever, but people everywhere need a jolt and dose of autism's reality.

Maybe shirts that say my child has autism would be a good idea too.

Isn't this what the proposed changes to the DSM criteria are all about? If we lump all the forms of autism together, there won't be any way to differentiate the severely afflicted from the mildly impaired. With all of it lumped in one number, it's obviously just better diagnosis at the mild end of the spectrum and nothing to worry about at all.

My cynicism tells me it will never get any better. Autism is a crisis that will never receive the recognition it needs, nor the support, and the government, big pharma, and the media will never change their minds.

You're absolutely right, Anne, the media's (mis)portrayal of autism is working exceptionally well. The day the S. Korean study results came out, I received an email from my sister, who is an accomplished writer, speaker and college professor with a wide circle of friends, stating that gosh, she thinks she may be somewhere on the spectrum as well, and is there (giggle, giggle) some sort of online questionnaire she can complete in order to determine exactly where she falls on the spectrum? And this is a person who has been exposed to my son's severe autism and all its challenges for over a decade now. I literally felt as if I'd been kicked in the gut.

Anybody else remember that show St. Elsewhere, from around 25-30 years ago, in which one of the doctors had a son with severe autism - complete with head-banging, rocking, aggression, and no speech? How did we as a society go from that more accurate portrayal of autism, as something no sane person would wish upon his/her child, to portraying autism as just some sort of fascinating little personality trait we could add to our Facebook profile?

And how do we go about busting Loughran's and others myths that autism is "just being human in our own slightly nutty way" and expose our children's debilitating struggles without invoking fear (because yes, some of these behaviors can be surprising and scary)? Would more documentaries be effective? Would people outside our community even watch them? Does anybody 'out there' even care?

And then there's this nonsense being bruited about. Autism is apparently the new black.

"Conceptualizing the Autism Spectrum in Terms of Natural Selection and Behavioral Ecology: The Solitary Forager Hypothesis"

http://www.epjournal.net/filestore/EP092072382.pdf

Kristine, yes, we must allow them time to pull the ten leaves off of the tree...read that disgusting link I posted!! We don't want to inhibit the "natural" drive of these hunters and gatherers.
Yes, we post a sib at the mall exit so we don't have our bad little one bolt into traffic, certainly the service of doormen in the past.

Autism is geeting the treatment that ADD/ADHD got a while back: it's just a bogus disease caused by teachers' inability to control normal boy behavior and their desire to drug the little twerps into compliance. Now autism is just a normal variant of human behavior that has been around forever but we're just now recognizing it etc..

I should not have read this so early on Monday morning! As the parent of a child who is minimally verbal and has severe autism, I find the notion that "we are all a little autistic" to be so offensive. Per the DSM, autism is a disorder that is marked by serious impairment, and that is even in it's "mildest" form. If someone accepts the label "autism" then they are saying there is a disability!! Not just quirky or different.
Also, I find it totally outrageous that people in positions of power (to include the media) would be able to continue talking about the increase as just better diagnosis, broader criteria, diagnostic substitution. What planet are these people living on? I would invite anyone with that (illogical) opinion to visit the multiple special education classrooms in my small school district. Anyone who knows a child with severe autism would know there is no way anyone could have missed "autism". The hand flapping, jumping around, stimming, vocalizations, spinning, etc- it cannot be missed.
I think the part of the "big lie" that bothers me the most is the notion that we got a diagnosis for more or better services. WHAT SERVICES? My child was diagnosed before he was 2 and guess what? No free services. Free or public early intervention is a MYTH in most states in this country. My son received an hour of speech and an hour of PT, which we paid for on a sliding scale. Then when he turned 3, he was tossed in a self-contained class which was like really bad daycare. Is this early intervention? Are these the services we all are clamoring for an autism diagnosis? Please. And even for people who do get services covered with insurance or the state, it's not a fun time to be driving all over carnation, dragging your typical kids (hey, kids really it's so fun to drive for 40 minutes, watch your brother's speech therapy then help mommy drag his screaming limp body in the car because he couldn't pull exactly 10 leaves off the bush, drive home 40 minutes, you didn't really want to go to the pool today, right?) Honestly, it's not my pleasure.

I agree with you barbaraj. I think we are dealing with a bunch of sociopaths many of whom happen to be wealthy, powerful and in positions of great influence. We need to take these people down. Find these cowards and expose them to the world.

I believe it's becoming a sick game for those who are trying desperately to take the heat off of pharmaceuticals and place it on evolution. They are having fun, maybe "they" are sociopaths and "just maybe" that's more prevalent now than in the past, as well.
http://truthdive.com/2011/06/06/Autism-may-have-played-important-role-in-human-s-hunter-gatherer-past.html

Greetings from Florida! My name is Fatima Delle Donne. I SUPPORT AUTISM AWARENESS. I am happy to join your Age of Autism. I hope I can somehow work together. Congratulations and I hope we can share lots of experiences along the journey. My very best, Fatima Delle Donne

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