AGE OF AUTISM

Oklahoma City Sees Autism Population Triple in Schools

Managing Editor's Note: Anne Dachel is a tireless advocate for people with autism and Asperger's.  Below is her comment.  Please subscribe to her newsfeed at AnneDachel.com

Oklahoma City teachers work to transition autistic students to regular classrooms

The number of students with autism in the Oklahoma City School District has tripled in the past decade. Teachers are working to help transition this growing population into mainstream classrooms.

http://newsok.com/article/3647625

Classrooms such as Felton's have become more common in the Oklahoma City School District. The number of children diagnosed with autism in the district has more than tripled in the past 10 years.

Officials face a growing challenge of transitioning children out of specialized classrooms and into the mainstream student body.

Autistic count climbs

The Oklahoma City School District has seen an explosion in the number of children diagnosed with autism, said Michelle Miller-Hayes, director of special education for the district.

The number of autistic students has risen from 57 in 2001 to 197 last year, Miller-Hayes said.

That's an increase of 245 percent. The general student population went up about 7 percent during the same time, according to district statistics.

The demand is growing for special education for autistic students, and administrators, teachers and staff are working to help those children succeed, Miller-Hayes said....

Comment:

This story tells us, "The number of autistic students has risen from 57 in 2001 to 197 last year" in the Oklahoma City School District. No explanation is given. What if the numbers continue to grow at this rate? What will it take to make autism a crisis?

Conservative estimates put lifetime care costs for ONE PERSON with autism at $3.2 million. That figure came out in 2006. Dr. Thomas Insel, head of the Interagency Autism Coordinating Committee created by Congress, has warned about a million Americans who "may be in need of significant services." Insel has also said that 80 percent of Americans with autism are under the age of 18. No one has ever shown a comparable rate among adults, especially adults with full-blown autism whose symptoms can't be denied.

All these facts taken together should scare everyone.

Anne Dachel, Media editor: Age of Autism

 

Why Do Autism "Experts" Know So Little? The DSM-5 Debacle.

By Anne Dachel

Experts know NOTHING about autism. NOTHING. Not the cause or the cure. They’re not sure what the current rate is since the last time they updated the numbers was three years ago but it was based on studies of eight year olds back in 2006. Now they’re also telling us that they don’t even know exactly what autism is.

Stories are out everywhere about the American Psychiatric Association’s plan to revise their manual of mental disorders, known as the DSM, where they’ll be changing what we now call autism.

I’m not sure why we should trust the people who can’t tell us anything for sure about autism. When exactly are they going to get it right? In a couple of years will they be overhauling autism again? I would think that a lot of psychiatrists are embarrassed about the perpetual head scratching over autism, but they’re not. News reports give us doctors who welcome the changes. It seems they’ve finally figured out what the word autism really means.

Parents are worried however. No one is expressing a lot of hope that a new definition will make life better for any kids with autism, in fact, a lot of parents are very concerned that getting rid of the label of autism will mean children will lose critical services.

Now Dr. Catherine Lord, one of the experts working on the DSM changes, hopes that won’t happen. She was on CBS News on Jan 25  saying, "Families are very, very concerned that their kids are going to lose their diagnosis. It's really important to reassure people that there's no intention that that will happen. ...The intention of the new criteria is to better describe children--and adults--who have autism, Aspergers Syndrome, PDD-NOS, ... We don't want criteria that diagnose everyone as having autism. We want to do a better job of diagnosing the people who do. We're not trying to exclude anyone."

And Lord also announced on CBS that for some kids, autism isn’t a lifelong disability. Lord said, “10 to 20 percent outgrow autism--those without other severe problems.” That is a stunning claim. I seriously want to see the thousands of kids who outgrew autism, especially kids who were non-verbal and who displayed all the signs of classic autism we’re so familiar with. I want to see those children today as a typical-acting with no signs of autism.

With all the quibbling over the word autism, no one is ever worried. The Catherine Lords of the world act like we have lots of time to figure out autism and that losing a generation of children to a disorder no one ever heard about 25 years is something we just have to learn to live with. No one talks about what this country will be like when one percent of adults as well as kids have autism and we’re paying and paying and paying. (And I’m sure there are lots of people who look forward to that day so they can say, “See, we told you the rate was the same for adults!”)

Anne Dachel on DSM5 Changes in The Health Care Blog

Congrats to our own Anne Dachel who has been autism's town crier for years in an effort to ensure services, treatment and care for ALL of our loved ones facing the challenges of a spectrum disorder from the most severely affected autism to adults with Asperger's.

Please leave a comment in support of her work and about DSM5 at The Health Care blog HERE.  You can subscribe to her informative news feed site at AnneDachel.com

DSM-5: You're Still Autistic. You're Just Weird. You We're Not Sure About. Call Us Tomorrow.

By Anne Dachel

It’s hard to imagine more chaos in the world of autism than what we see happening right now.  Autism is more and more in the public spotlight.  The numbers are huge and no one can explain them.  Since 2009 we’ve been told that one percent of children have autism.  Among boys alone, it’s almost two percent.  Mainstream medicine can’t explain the stunning increase in a once rare disorder.  For years health officials gave doctors credit for all the autism everywhere.  They said it was the result of “greater awareness” and “better diagnosing.”  Children who were mislabeled as something else were now correctly called autistic.  The criteria for diagnosing autism was laid out in the Diagnostic and Statistical Manual of Mental Disorders (DSM) and a child with symptoms would be placed somewhere on the autism spectrum, as it came to be known.  This included very high functioning autism and Asperger's syndrome all the way over to the other end of the spectrum to those with severe intellectual impairment and all the signs of classic autism. 

Between 2007 and 2009 the autism rate went from one in 150 to one in every 110 children and even health officials had to admit there was more going on here than just better diagnosing.  It looked like lots more kids really did have autism.  To address this, groups like Autism Speaks poured millions of dollars into studies looking for the gene/genes that cause autism—with no conclusive results.  Studies did turn to the environment, since if the explosion in autism was real, genes alone couldn’t possibly explain it.  We were regularly told about studies linking autism to older dads, older moms, siblings too close together, lack of vitamin D, living too close to a freeway, low birth weight, and the list continues to this day.  The one thing that officials continually denied was any link to the ever-expanding vaccine schedule.  After seeming to study the possible connection in depth, the agency that runs the vaccine program gave their vaccines a clean bill of health.  (And after delivering the coup de grace to the vaccine-autism link, the last head of the Centers for Disease Control, Dr. Julie Gerberding, became the head of the vaccine division at Merck.)

Meanwhile, autism became a real public health issue.  News stories about the number of affected children and the cost of educating and treating them were common.  Almost as an aside was the line, “Autism has no known cause.”  There was nothing doctors and health officials could actually tell us about autism except that we should look for signs of the disorder in babies and young children because early intervention led to the best outcome.  Officials didn’t seem concerned that no one was able to find a comparable rate of autism among adults.  Since many experts still adamantly claimed that there was no real increase, someone somewhere should have been eager to find the misdiagnosed/undiagnosed 40, 50, and 60 year olds out there with autism, especially those with classic autism whose symptoms are undeniable.  This was never done.

With more and more children being diagnosed with autism, more attention was given to the disorder.  Autism Speaks, the biggest advocacy group in the U.S., was started in 2005 and Congress set up the Interagency Autism Coordinating Committee in 2006.  It appeared that whatever could be done about autism would be done, with millions of dollars thrown into the mix. 

The problem is that not much has been learned about this disorder in the last six or seven years, except that the numbers continue to grow and the controversial link to vaccines isn’t going away.  In fact, with growing concern over autism, more and more parents have stopped vaccinating.  Despite the endless promotion of vaccines as safe by people like Dr. Paul Offit, himself a vaccine developer, questions continue to be asked.  While the federal government has long claimed that the National Vaccine Injury Compensation Program has never paid out for vaccine damage that included autism, last year it was revealed that dozens of children with autism have received millions of dollars in compensation.     This followed the news in 2008 that Health and Human Services had conceded the case of Hannah Poling, the young Georgia girl who regressed into autism after being vaccinated. 

Autism Speaks Continues "To Sleuth the Causes of ASD"

By Anne Dachel

Autism Speaks caught my attention recently.  I watched a Public Service Announcement from AS featuring American fashion designer Tommy Hilfiger and his daughter who has autism.

  It actually says nothing about autism but it does remind us that a lot of kids have the disorder and "early diagnosis can make a lifetime of difference."  The fleeting seconds at the end where we actually SEE AN AFFECTED CHILD is a sweet feel-good moment.  All in all, it’s a nice tribute to Tommy Hilfiger but contains nothing of substance about autism--so much for any parents who might actually want to learn something about the disorder.  AS’s message is that autism happens-- the best we can do is to find it early.   

Autism Speaks has been around since 2005 and it raises millions of dollars with a lot of it from local fund raising by trusting parents.  AS gets national attention in the press as America’s largest autism science and advocacy organization.  Their website announces that they are "dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families."

Autism Speaks regularly sends out a report on "Autism In The News."   There you'll see all kinds of stories about autism including a couple of recent ones again mentioning Dr. Wakefield's "discredited vaccine-autism report."  Autism in the News generally avoids the heated controversy over vaccines and autism.
 
I also recently got an email with the annual letter from Autism Speaks’s Chief Science Officer Dr. Geraldine Dawson.   Dr. Dawson reviewed what 2011 was like for autism. She started out telling us about the genetic links and the fact that a 2011 Stanford University looking at identical and fraternal twins showed that the environment was a greater factor in the development of autism than genetics. Dawson wrote, "This strongly suggests that environmental influences play a significant role in autism--prenatal influences being among the most likely.  This seemed to have been a big surprise to Dawson who wrote that previous to the 2011 study, “it was taken as fact that the causes of autism were almost completely genetic.”  (Are we to believe then that until 2011 Dawson didn’t believe there’d been a real increase in autism, since it’s impossible to have a solely genetic epidemic?)

In addition, Dawson praised all the research Autism Speaks is funding, which to the outsider looks like they're leaving no stone unturned.  With all these studies going on it's a mystery why, when it comes to what we actually know about autism, it's next to nothing. There is still no known cause, cure, or effective treatment for autism.  There’s nothing that mainstream medicine can tell an expectant mother so that her next child doesn't also end up on the autism spectrum.  

Dawson noted that all these studies have a "great potential for deepening our understanding of autism's causes.”  It seems that when it comes to autism, we're always waiting for answers that are years down the road.

Washington Post: "No one has real answers. They didn't then, and they don't now."

Managing Editor's Note: Anne writes about author Susan Senator's recent experience with a son who has "aged out" of school services and the difficulty she faces in crafting a safe, meaningful adult life for him.  Susan is a good friend of mine and has been a force for her son Nat's school services  and now, adult programs.  Her novel DIRT: a story about gardening, mothering, and other messy business is a great read - and deftly weaves the family dynamic of husband, wife marital strife and siblings when autism is in the house.  Check it out at Amazon in paperback and ebook. Anne Dachel has been screaming from the rooftops for years "The adults are coming! The adults are coming!" and few have listened. This is an area where we can all agree - our kids will need services and care - most of them for the rest of their lives.

By Anne Dachel

Washington Post: "No one has real answers. They didn't then, and they don't now"

Washington Post: Tiger Mother to an autistic son

Albuquerque Journal: Mother's Fight for Autistic Son Never Ends By Susan Senator

This story started with the Washington Post and it was picked up by the Albuquerque Journal. Susan Senator talked about her mission advocating for her son now that he's aged out of the school system.  It's mammoth task and she's had to write her own job description. 

It brings back so many memories. My son is 25. How he survived in school until I started to homeschool him, I'll never know. In the second grade, the school system got a psychologist to come from Minneapolis (a hundred miles away) to figure out what was the matter with this weird acting kid. She told us, "Your son has autism. I don't know if he'll ever be able to live independently or hold down a job. We don't know much about autism--it's such a rare disorder. There's probably not another child in Chippewa Falls who also has autism."

Chippewa Falls is about 13,000 people.

It was devastating. I was totally on my own-no one knew anything. I knew lots of teachers, being one myself, and they couldn't help me.

I had to develop my own curriculum.

When John was diagnosed with autism I told his speech therapist the news and she said that she didn't believe it. She told me that she had met an autistic child once and he was nothing like John.

NOW, almost 20 years later, there are two other autistic children in this neighborhood. Every school has their share of autistic students. I'd have to be a complete idiot not to believe that something terrible is happening here. Why are we pretending this is normal and acceptable?

Here's what Susan Senator wrote:

I'm tired of being called brave. But being the mom of a deeply autistic young man of 22, I can't avoid it. Because I survived. Ever since Nat's birth, in the Autism Stone Age of 1989, I have had to be a Saber-Toothed Tiger Mother - or at least pretend to be one. From finding the right doctors to getting my town to do right by him, to also doing right by my other two sons, I have always had to be strong - or feign strength. What to expect when you're not expecting autism? No one has real answers. They didn't then, and they don't now. It has always been up to my husband and me.

I never thought that figuring out autistic adulthood would be the same way. Now that Nat has finished school, I feel like I am right where I started, the diagnosis days: grieving, confused, panicked. I'm sad because I miss the comfort and safety of the old routines.

The other thing I hear a lot is that Nat is an angel, closer to God than others, here to teach me something. No, he's not. He is just a complex young man. He's not a spiritual messenger or a puzzle. The adult-services system, or perhaps the lack thereof, is the puzzle.

Helping Nat have a decent adult life is our family's greatest challenge - not Nat himself. We want him to have a life with something to do: a job, volunteer work; a place to live safely, cared for; days with a rewarding rhythm. These are things I've been working on since he was a teenager - along with his school. Those teachers had Nat working at Meals on Wheels by 14 and at Papa Gino's by 19.

Now Nat is transitioning to adulthood, he is finished with public education services, and he begins navigating the far more complex adult-services system. I've done everything "they" tell you to do. I attended workshops, seminars and conferences. I pushed to get Nat funding and to qualify for whatever programs might help him live as independently as possible. I know I can't afford a staff person myself, nor will I live forever.

I did my homework. I visited an adult group home before Nat graduated and did not like what I found. Care was adequate but lifeless. Some of my friends' children had it even worse: from regularly missed appointments to soiled, unchanged underwear. We've all learned that adulthood can be abysmal for kids like ours. And yet without the programs we've got - troubled though they may be - we have practically nothing. I cannot fathom what would happen to all of us without programs such as Medicaid and the other gossamer-thin safety nets.

It dawned on me recently that I am going to have to do more than act tough and tireless: that I have to become what they say I am. Because I have to face the fact that no matter how hard I push, we still may not end up with a good situation for Nat. If only there were a waiting list for a stable adulthood experience like those to get into the good autism schools. I know how to be on those.

I've tried for the past year to put together my vision for Nat: a group home of my own, with like-minded families and staff that we help choose. And every time I get close to succeeding, some piece or another does not fall into place. You can't get funding until you have a group. You can't get the group together until you have a house. You can't get the house until you have the funding.

And so, on top of all the emotional upheaval, Nat's turning 22 is a Catch-22. Funding is scarce, and the programs can be iffy because of it. As always, there is no one to ask; every expert and professional has a different story. In the end, I'm figuring it out as I go, only now I am no longer a young mother.

I posted this comment:

Susan Senator tells us exactly what's out there for young adults with autism. It's an abyss.

AAPS on Vaccine Exemptions

By Anne Dachel

On December 14, 2011, Marketwatch.com (a site connected to the Wall Street Journal) ran the story, Physicians Oppose Mandatory Flu Vaccine for Health Workers.  It was a press release from the Association of American Physicians and Surgeons  and this is what it said:

“In a letter to Colorado public health officials, the Association of American Physicians and Surgeons (AAPS) opposes a rule requiring workers in health care facilities to have an annual influenza vaccination or lose their jobs. Workers who had a rare religious or medical exemption would be required to wear a mask in patient care areas from November through March.

“The religious exemption is too narrowly drawn, AAPS writes, and should be a philosophical exemption, as accepted in many states, to "to avoid inquisitions into matters of faith." The mask requirement "seems to be nothing more than a punitive retaliation against those who decline the vaccine" and should be dropped, the AAPS letter states, as both immunized and nonimmunized individuals can transmit influenza or other illnesses.

“The New Mexico study cited in support of the policy shows a tiny effect: an adjusted odds ratio of only 0.97 for confirmed influenza "outbreaks" (at least one case) in residents of long-term care facilities where 60% of direct-care workers were immunized compared with facilities with a 51% immunization rate. This means that in facilities where more workers were immunized, residents were still 97% as likely to get influenza. "Many other factors could account for the small difference," states AAPS executive director Jane Orient, M.D.

“In the age of ‘evidence-based medicine,’ AAPS notes that there is surprisingly little evidence supporting the efficacy of influenza vaccine, and evidence of safety is also scant. According to a 2006 article in the British Medical Journal by Tom Jefferson (here) , the coordinator of the vaccines section of the Cochrane Collaboration, safety data are reported in only five randomized studies with 2,963 observations. Many repeated doses of similar vaccines likely increase the risk of allergic reactions, and no data exist on the safety of a large number of doses, states Dr. Orient, citing a 2006 article in the Journal of American Physicians and Surgeons.”

Denying the Tsunami -- L.A. Times, Meet New Jersey's Autism Services Crisis

By Anne Dachel

 Northjersey.com: 'There's a tsunami of these kids coming'

 The recent Los Angeles Times series by Alan Zarembo has drawn all kinds of criticism in the autism community.  Personally speaking, I'm at a loss to understand how a leading U.S. newspaper could so willingly turn its back on the sufferings of a generation of children.  Zarembo set out to convince us that autism has always been around and that there's nothing to be alarmed about with hundreds of thousands of children now diagnosed with a disorder no one heard about 25 years ago. 

 Lacking any real proof, Zarembo made the claim that experts just used to call autistic people something else or they just missed them all together.

Autism Hidden in Plain Sight

Over the last two decades, estimates of the autism rate in U.S. children have climbed twentyfold. Many scientists believe the increase has been driven largely by an expanded definition of the disorder and more vigorous efforts to identify it.

Scientists are just beginning to find cases that were overlooked or called something else in an earlier era. If their research shows that autism has always been present at roughly the same rate as today, it could ease worries that an epidemic is on the loose.

HERE

The explanation for the boom lies mainly in social and cultural forces, notably a broader concept of autism and greater vigilance in looking for it.

Autism Boom: An Epidemic of Disease or Discovey?

Identifying it as early as age 2, in the hopes of diminishing its symptoms through treatments that are now widely available.

"It used to be that autism was the diagnosis of last resort,'"said Catherine Lord, director of the Institute for Brain Development at New York-Presbyterian Hospital and a leading authority on autism diagnosis. "Nobody wanted it. Now it is seen as preferential."

On the severe end are children who in the past might have been considered mentally retarded, schizophrenic or even psychotic.

Anyone paying attention can easily see that Zarembo's work has no relationship to what's happening in the real world.  Within a day of the last Times piece Northjersey.com published the story, NJ autistic adults lack programs by Harvey Lipman . HERE

New Jersey suffers from a severe shortage of programs geared specifically to the needs of adults with autism. That situation is likely to get considerably worse in the near future, as large numbers of autistic children graduate from special education and will likely need adult services. To make matters worse, a state policy designed to give families of developmentally disabled adults more control over care options actually denies non-profit agencies the seed money they need to create new programs.

New Jersey has the highest documented childhood autism rate in the nation; a Centers for Disease Control study in 2007 found that 1 in 94 kids in the state has the condition. Many of those children, if not most, will need continued services as they grow into adulthood. And the programs for adults with autism are few and far between.

The LA Times Makes the Autism Epidemic Disappear

Managing Editor's Note: If you'd like to politely tell the LA Times what you think of their reporting here are contacts: Reporter of the four-part feature, alan.zarembo@latimes.com, VP of health content, tami.dennis@latimes.com, Dept. Managing Editor, marc.duvoisin@latimes.com, Dept. Health Editor, karen.kaplan@latimes.com, Managing Editor, davan.maharaj@latimes.com, Asst managing editor, alice.short@latimes.com

By Anne Dachel

One way to make the whole controversy surrounding vaccines and autism go away would be to make the autism epidemic go away and that’s what the Los Angeles Times is trying to do in their series, Discovering autism: Unraveling an epidemic.

 Discovering Autism Epidemic of Disease or Discovery?

"Autism rates have increased twentyfold in a generation, stirring parents' deepest fears and prompting a search for answers. But what if the upsurge is not what it appears to be?"

In part one of the series, reporter Alan Zarembo presented a number of children who've received an autism diagnosis as proof that the explosion in autism is not what it appears be. He gave us experts like anthropologist Roy Richard Grinker and psychiatrist Allen Frances who see no real increase in autism, only an 'epidemic of discovery.'

The issue of environmental triggers was dismissed with a couple of sentences:

"The search for an environmental explanation for the rise has so far been fruitless."

"Researchers looking for environmental causes of the autism boom keep stumbling across other explanations.

"Irva Hertz-Picciotto, an epidemiologist at UC Davis, suspects that environmental triggers such as exposure to chemicals during pregnancy play a role. In a 2009 study, she started with a tantalizing lead — several autism clusters, mostly in Southern California, that her team had identified from disability and birth records.

"But the hot spots could not be linked to chemical plants, waste dumps or any other obvious environmental hazards. Instead, the cases were concentrated in places where parents were highly educated and had easy access to treatment."

The heated controversy over vaccines and autism is totally ignored. Instead, we were presented with lots of evidence that the exponential increase in autism is due to greater awareness, a push for a diagnosis by parents desperate for services and doctors willing to accommodate them.

Zarembo gave us examples of children with abnormal behaviors that now fall under the autism label and he explained how over-diagnosing and reclassification can account for the increase.

"A driving factor is that parents, physicians and educators have become intent on identifying it as early as age 2, in the hopes of diminishing its symptoms through treatments that are now widely available.

"On the severe end are children who in the past might have been considered mentally retarded, schizophrenic or even psychotic."

"Growth in milder cases accelerated after the 1994 edition of the psychiatric manual added a new diagnosis to the spectrum: Asperger's disorder, for children with autistic behaviors but no speech problems or intellectual deficits.

"Duke University's Frances, leader of the scientific panel that created that edition, said the change unintentionally opened a floodgate.

“'People started seeing it whenever a kid does something the slightest bit strange or starts collecting too many baseball cards,' he said.

"The definition is set to change again when the next edition of the manual is published in 2013, with the aim of greater consistency in diagnosis."

Zarembo will be continuing the series with three more parts, all designed to convince us that having thousands of neurologically disabled children is nothing to worry about. This is very timely coverage because frightening autism numbers are being reported everywhere.

The Salt Lake City Tribune announced that their autism rate is one in every 70 children, one in every 49 when looking at just boys.

ABC News flunks ABC's of Autism in Reporting

By Anne Dachel

I was amazed at an investigative series that ABC News just aired.  It was all about how the U.S. government allows psych drugs to be used on children in the foster care system.  It’s stunning to watch the segments ABC News has produced.  The most vulnerable among us have been horribly abused by very people the government has empowered to care for them and ABC News exposed this scandal to the public.  Diane Sawyer and a number of others at ABC News worked on this investigation for over a year.  Here’s what ABC News had to say:

ABC News – November 30, 2011 -- U.S. Government Fails to Oversee Treatment of Foster Children with Mind-Altering Drugs

“Across America, doctors are putting foster children on powerful, mind-altering drugs at rates up to 13 times that of children in the general population. What’s more, doctors are prescribing foster children drugs at doses beyond what the Food and Drug Administration has approved, sometimes in potentially dangerous combinations, according to a new report by the federal Government Accountability Office.

“’It’s just almost beyond comprehension,’ said Sen. Thomas Carper, D-Del., who asked for the GAO investigation. ‘We want the doctors and nurses that are prescribing these medicines to look at their behavior and think and ask this question. Are we doing something wrong here?’

“Four drug makers have paid a total of more than $2 billion to settle claims they illegally marketed antipsychotics to children. All deny wrongdoing.”

On the video--Diane Sawyer: “An indictment of what the U.S. government does to some of the most vulnerable children in this country. We have spent a year investigating a horrible secret, tens of thousands of foster care children, even infants, given powerful mind-altering drugs and at times in doses and combinations considered too risky for adults.”

Sawyer: “There is no idea what the long term effects of these drugs could be on a child’s developing brain.”

“Medicaid pays for these drugs.”

ABC News – December 1, 2011 – Psychiatrists Put Kids at Risk With Mind-Altering Drugs

Diane Sawyer: “Foster care children…so many of them over-medicated with powerful mind-altering drugs. An unholy convergence: our tax payer Medicaid dollars pay for the drugs, the pharmaceutical companies see a market, and a lot of times doctors can move through many patients, fast.”

ABC: “We spent a year searching for answers.”