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

There-Are-None-So-BlindBy 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.

"There's a tsunami of these kids coming and there are not nearly enough programs," said Carolyn Hayer, a Hackensack advocate for community programs whose son Chris is autistic. "To invest all that special-education money in these kids and then leave them at home watching TV is criminal."

I especially noticed comments in the piece like, "the only program his mother could find hardly met his needs either,"

"The need is huge," said Toli Anastassiou, program director at Quest, which has eight young adults enrolled in its program. "We're capped by our physical space. Our waiting list would easily allow us to double our size."

"And that waiting list would be even larger, he added, if families desperate for services didn't drop off it to accept spots in programs that aren't geared to helping the autistic."

Alan Zarembo claims that autistic adults have always been here, in his words, "hidden in plain sight." So what is Harvey Lipman talking about?  It should be Lipman's job to convince mothers like Carolyn Hayer that there's nothing to worry about regarding the future for their children.  There is no approaching tsunami.  Autism has long been a normal part of the childhood landscape.  Young adults with autism will go where autistic adults have always gone. More significantly, if the Times series is right, New Jersey has done an abysmal job of addressing the needs of both autistic adults and children in the past. The system has a lot to answer for.

--

Anne Dachel is Media Editor of Age of Autism.

Comments

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In 1987 I worked for an organization that provided group homes for people being de-institutionalized and put into group home settings (this movement started in the 70s, I believe). At least HALF of the people in those homes were the "non-existent" autistics you describe. There was one that would do nothing but rock from foot to foot while shaking his hands, except the rare times when he decided to sniff you, and another that moaned and chewed constantly on the thick callouses his hands had developed from constantly being bitten.

I actually agree with the "you didn't notice them because they were institutionalized." When a child was that severely disabled, parents were assured that it was best for the child and the rest of the family if the child were hospitalized. It was probably not often discussed with children (those of you who are trying to remember all of the autistic children in your schools), because it was a very sad thing, for starters, also, sometimes siblings/family worried that if it were known they had a family member that required institutionalization that they would be regarded as similarly 'defective,' so it just wasn't brought up.

The autistic patients I worked with in the mid-80s were in their 40s through 60s, by the way...

I was born in 1955. I believe lack of knowledge is the reason I was not diagnosed as a child and the fact that the diagnostic tools there are today simply did not exist and were not available to everyone via the Internet. I have lived with autism all my life, I never had any friends, I was always sick, I was a nonverbal child isolated and ridiculed and teased.
My parents were born during the depression and lived through WWII. They struggled to scratch out a life for us. They did not have time or money for interventions for me when I was young. I have cousins who have autism, I have nieces and nephews who have autism. We Autistic adults are here, not as many of us were injured as severely as children today because the number of vaccines has tripled.
I liked the LA Times article because it acknowledged me. My disabilities were invisible or denied all my life and my life was a mystery to me. I like that I can see now why my life unfolded the way it did. I always blamed myself, now I know it was just the luck of the draw that my immune system was damaged by vaccines and no one know-how to fix it so even I was in denial as an adult. It gives me peace to know that.
I think vaccines can not be given to some children without tragic consequences. I think the increase in numbers of diagnosed children has to do with the increase in the number of vaccines given at an early age. I am happy that there are interventions for these vaccine injured children today. Living without intervention when I grew up is not something I would wish for anyone.

Cherry:
My daughter is autistic, having been given the hep-B vaccine at birth with its then full component of mercury. But millions of children are autistic because of the MMR, which is a live virus vaccine, and never had mercury. Mercury is by far from the only problem, vaccines in themselves are the problem, and their ingredients, highly provocative antigens by definition, often provoke the immune system into excessive inflammation (encephalitis) or chronic inflammation (autoimmune diseases). The enemy is not just mercury, but vaccines per se.

Yes, as Kendra and Kristine have pointed out talk to those of us who grew up in rural America. I'm in my early 50's and grew up in a small town in rural, midwestern America. Growing up in our community we had several kids with Down's Syndrome that attended special ed classes and even one of those kids was bussed in from a neighboring school district. There were several other kids with learning disabilities BUT these kids talked, dressed themselves, drove, feed themselves, used the restroom and attended the same social functions the rest of us did. These kids were our "social peers".

What we did NOT have in our schools were nonverbal, self mutalating, head banging kids. We did NOT have kids that were of school age and still in diapers. I'm also from a teaching family. My parents and aunt did not have kids like that in their classrooms.

In a small community you know the details of your neighbor's lives. If a family had had a child with those kinds of difficulties and had institutionalized that child you better believe the whole town would have known. There were none in our town. Based on the size of our community there should have been a half dozen or so kids with autism - there weren't.

how about the myriad of other disorders...did we miss those, too? Like asthma, or say, latex or peanut allergy? When we were kids, we all played with balloons and ate peanut butter sandwiches. Maybe we just weren't paying attention to those who were keeling over from anaphylactic shock after ingesting a peanut. But surely they were always with us... :/

I know well an American pediatrician, who is finally, now that her son is 10 years old, beginning to speak of him as Aspergers. But she still wants to believe that it is genetic, because of her husbands traits. Im sure that she is just one of many. In the end this is what it comes to for everyone who has not seen the research or seen their own child regress soon after vaccines:
NO NO NO !!! It just cant be the vaccines!!! They are so wonderful, so perfect, so well-tested, that I wont even visit the ANTIVACCINE WEBSITES . I wont even read the studies that say that mercury is the most likely cause of autism.I dont care what distinguished professors say about mercury and aluminum in vaccines. Its just GOTTA BE the toxins in the environment or drugs the mom took. Everything is genetic! maybe even psychological ! The doctors say that there were always kids like this, we just didnt notice them. I am not interested in reading scientific facts about vaccines, because I already know they are perfect and I dont want to talk anymore about this

Please everyone, spread the word about what autism is truly like. Look for new ways to fight for the cause. The next time someone glares at you in a supermarket, walk up to them and say quietly, "You have no idea what autism is like" or " My son is like this because I vaccinated him to hell and back" Say anything that gets people thinking and wondering. And please go to CoMeD website and if you like what they are doing, make a donation. I see them as one group that is fighting the legal front and fighting on the international level. It is possible that when mercury is no longer used internationally in vaccines, autism will vanish in other countries, and the game will be up.

Kendra's comment should be its own post- it's spot on! I cannot understand when people don't reflect on their own life experiences and realize that articles like the LA times is one big line of bullsh*t. I also grew up in a smallish town and I don't recall one. person. ever. having a condition with any resemblance to autism. I'm only 35. My own brother had a learning disability and was in a special ed class- the only one in the county- not a one kid had autism or anything even similar. I have a kid with the unmistakable variety of autism. People like my kid did not exist 50 years ago. And even 20 years ago were exceedingly rare. Now we are everywhere.

"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."

Let's see...what would have been "preferential" to me would be for me to get the last eight years of my life back with no days-long tantrums, special diets, judgmental glares, unwanted advice, toe-walking, gibberish, repetitive actions and motions, foul diarrhea, obsessive behaviors, 9 (!!!) suspensions in kindergarten, endless supplements, excruciating doctors appointments, IEPs, blood tests, potty training nightmares, void, lifeless stares and sunken eyes that never failed to break my heart and thousands upon thousands of dollars being spent on my son's recovery! THAT is "preferential" to me! Autism diagnosis - NOT SO MUCH. A status symbol, it is not.

When people like "Sincerely" make their claims, they have to immediately be disputed by truth. The institution argument does not hold water. If we simply didn't know about them, then they would have had to be whisked off to the institution at birth. And still we would have known about them. "What happened to Sarah's baby, where did it go"? In reality, Autism is not normally diagnosed for years, even worse prior to the last decade, so these children would have been in our midst before being whisked off to the institution. We would have known about them no matter what they were being labeled. I have always said we have to look at the small towns scattered throughout America, towns where everyone knows everyone, schools are small, and especially children with disabilities or special needs were and are known to all. I grew up in such a town. No disappearing children, no autism. In fact I knew one child my entire childhood with moderate mental retardation. He went to school with all of us.
We have a project where we encourage people to scour through old yearbooks and find the people who might have been autistic and missed, you know the quirky, different, even mildly disabled. They can't find anyone. No remembered children that flapped, toe-walked, made noises, rocked, couldn't sit still or learn in a normal classroom environment, couldn't speak, weren't potty trained, attacked other children or self-injured, lived in their own world. We can't find anyone even close, even if we stretch the definition to mild. They simply didn't exist. But now...autism classrooms are bursting at the seams, and even more kids with severe issues never dealt with before and they do not even have a diagnosis of any kind. We have "drug cubbies" where 80% of most students in any given class are on some kind of drug that is dispensed daily by teachers or school nurses. ANA Kits, inhalers, insulin, and the gambit of anti-psychotics and anti-depressants are dispensed daily without batting an eye. My school did not even have a special ed teacher because there was only one child that qualified for special ed. We didn't have a school nurse because no one took medication of any kind. Now they have an "autism expert" a special ed director, a special-ed teacher and at least 5 special education aides. My state went from 3 children known to have autism to over 8,000 in less than 25 years, and I have yet to meet one of them that does not obviously meet anyone’s criteria as being disabled. I have met 100s of these children and I can guarantee you that even 20 or 25 years ago not a one of them would have been missed. 20 years ago those same mothers would have demanded to know what happened to their child and parents would have regularly discussed the fact that a normal child could suddenly regress and become disabled. No one ever heard of that before this epidemic. I cannot find one adult over the age of 40 including retired doctors that ever knew of a child whose development regressed after being normal. Now it is parents' greatest fear. All you have to do is simply ask tenured teachers, especially in these small towns. Ask teachers that have been there for 30 years and hear their stories of how children went from Norman Rockwell's happy-go-lucky freckle faced kids to chronically ill and disabled. Instead of there being one child in town that everyone knew about with a disability or horrible life-long illness, now we are inundated with them. My daughter is diagnosed with DSM-IV Autism, yet in our tiny town there are many more with autism, and no less than 5 children relegated to the "resource room" of her school with no diagnosis at all, yet all 5 are far more profoundly affected and disabled than my child. Not only is it an epidemic, a tsunami coming of epic proportions, we are no longer even counting or diagnosing all of them as it is simply too much for schools to handle and they now have to start being far more selective about who they allow to be labeled and receive expensive services. Sincerely, obviously lives in a different suburb of the reality universe than the rest of us. It gets tiring countering the absurd, but it must be done as others hear it and believe it if they are not shown the evidence proving otherwise. Think about it... 3 children to over 8,000. Far beyond anyone's wildest dreams of better diagnostics, diagnostic substitutions, sweeping in of lesser cases otherwise missed before. No one can look at those numbers and deny "epidemic", not without having a very evil agenda behind such denials. The truth is ugly, the truth is painful, the truth does not take us to a happy, hopeful place, but it is the truth nonetheless and denying it will not make it go away. Show me the hidden horde, I should have known some of them, I do not and neither does anyone else I know.
I never heard of disabled children wandering and drowning, that alone seems to be epidemic today among autistic children, what we previously labeled them would not have changed their propensity to elope. I have never heard of disabled children denied boarding airplanes, never heard of disabled children being tazed or pepper sprayed by law enforcement, never heard of disabled kids being denied church attendance or preschools because their behaviors are so disruptive and no one seems to know how to handle them without special training. I have never heard of special schools being built for the disabled and most especially for one form of disability because there are just so many of them. On any given day you can find 20 to 30 news stories nationwide dealing with a disability so profound and so affecting our population that it is even newsworthy. We are all shocked as we have never ever seen or heard such things in our lifetimes. And as we hear the numbers, hear the costs, and see the outcomes, we know for a fact and without a whisper of doubt that we have never seen anything like this in the history of our nation, in the history of the world. The greatest and most devastating epidemic in history and some would simply try to sweep it under the rug. Denials and lack of preparation are only going to make it worse. As millions of families wonder what will happen to their loved ones when they are gone, too many simply seem not to care. If they have always been here, there wouldn't be an issue now would there, no debate, they will simply go where they have always gone. But it is obvious this is not the truth, there is no place for them to go. The epidemic is already aging out of childhood and Social Security is being slammed, agencies that help young adults have 10 year waiting lists, and it is only going to get worse. You deny reality at your own peril, and the peril of our loved children.

I'm beginning to believe that if paralytic polio had only struck 20 to 30 times more victims than it did, we would have only normalized the condition, at best offering lifelong managing treatments, and perhaps, failed to ever embark on the seemingly reflexive course of developing a vaccine for every condition possibly involving a pathogen or even an unwanted immune response. Does any MSM reporter ever want to look into why we have so many epidemics of believed to be genetic conditions involving unwanted immune responses?

Sincerely, I am 51 years old and have worked in an institution in the mid eighties; it was phased out for group home models and in-home care a couple of years after the year I worked there. I also visited some institutions as part of a PASS (analysis of service systems) course. I definitely think there were some children/ adults who had autism in the past but were labelled very generically as 'mentally retarded.' BUT, the VAST majority of kids there had known etiology for their problems- yes- Down Syndrome, various translocations, hydrocephalus, cerebral palsy or genetic problems. I find it even more frightening that there are large numbers of kids today for whom they know darn well (even after all this highly touted genetic stuff that has produced no explanations and the newest, largest twin study that shows environment to be more important than previously estimated) there is no genetic basis for their problems. I look forward to more real research like the stuff being done by Drs. Like Wakefield, Hewitson, Allen-Vercoe, MacFabe, Shaw, to name a few.

Thank you Anne for this article that shows the disgraceful reporting by the LA Times article! I never even heard the word autism until Rain Man and then, a few years later my own son became another autism diagnosis. The wait list for services will only grow longer as the years go on and the autism crisis is ignored by the media and society. We the families will be left to deal with it on our own.

Alan Zarembo is another journalist with an agenda. When the whole scandal is completely exposed, people like him will not have jobs in journalism.

Sincerely

But what they weren't, in great numbers, was autistic. There was no need for vast provision either in schools or institutions, and many would still be alive if they existed.

And while of course there were cases that were missed the "hidden hoard" has still not come to light.

If you are in my generation, most children with Down Syndrome and other severe development delays or mental illness (autism was not used as a common diagnosis until the 1990s) were institutionalized.

For infants with Down Syndrome, it was often thought best to institutionalize them from birth (!) in the 1960s and 1970s. (Down Syndrome couldn't be accurately diagnosed until the 1950s.)

So while you and I were going to public schools, most disabled children were in institutions, or schools for the blind or schools for the deaf. Where they were NOT was in our schools or our communities.

Beginning in 1970s, this began to change. Institutionalization was phased out.
Public schools were obliged to provide an appropriate education for first those with cognitive impairments, and then for those with physical impairments. Those students began to be educated in public schools and live at home with their families.

With the acceptance of autism as a valid diagnosis in the 1990s, programs were started specifically for autism. The generic and vague diagnosis of "mentally retarded" is being abandoned for more useful (but still frustratingly vague) diagnoses of ASD, PDD/NOS and so on. Genetic testing has created a host of named diseases such as leukodystropies, Fragile X syndrome and various genetic translocations or deletions.

Things have changed. Things will continue to change. I look forward to further genetic studies with great interest.

Another story about the real impact autism is having just came out from the CT Mirror:

New autism program only underscores extreme need

http://www.ctmirror.org/story/14908/new-autism-program-only-underscores-extreme-need

"The Centers for Disease Control and Prevention estimates that between 1 in 80 and 1 in 240 children in the United States has an autism spectrum disorder, and a recent report by the Thomas B. Fordham Institute found that while the number of special education students has declined since the 2004-2005 school year, the number of students with autism has quadrupled from 92,997 in 2000-2001 to 377,909 in the 2009-2010 school year. . . .

"'For many parents, there's quite a waiting list for the few people who are available and who are any good at it,' said Sara Reed, executive director of ASCONN, a parent advocacy group devoted to autism. Many providers who have top reputations have long waiting lists, and some families can wait two years or more for an appointment, she said. (An official autism diagnosis is not required for a child to receive services from a school system, but Reed noted that a good evaluation is key to determining the best interventions to try.)

"In medicine, psychiatry, social work, psychology, teaching -- 'You name it, and we don't have people trained at all in any of these fields to work with people with autism spectrum disorder,' said Lois Rosenwald, executive director of the Connecticut Autism Spectrum Resource Center."

This is hardly a disorder that's always been around. The LA Times piece is totally unrelated to what's happening all around us.

Anne Dachel, Media


Typical. They cannot find the genetic cause so they deny the autism epidemic actually exist. If they tracked just the kids with classical autism, they will see the HUGE rise in classical autism. These kids are impossible to miss. I am in my mid 40's and I NEVER saw a kid with classical autism when growing up. Now I see them everywhere. When David Kirby interviewed Dr. Insel regarding the incidence of autism, he stated that he had trouble finding a kid with autism. Here is a quote from that article...

"He added that he never saw a single case of autism during his training in the mid-1980s, including a full year's rotation in child psychology. "I wanted to see children with autism. I couldn't find them," he said. "Now I wouldn't have to go any further than the block where I live to see kids with autism today."

"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."


Professing themselves to be wise, they became fools, ........
ROMANS 1:22

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