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Autism File Magazine On Classic and Regressive Autism

Adults with Autism? What a Novel Idea!

Question mark kids By Anne Dachel
 
April 1, ABC News ran the story, Nation's First Adult Autism Clinic.     Here's what was said on the video: A mother asked: "What do you know about a 30, 40, 50 year old person who is diagnosed with autism?  You never hear about it.  The gap is obvious. There is no organized conversation about this topic."

We were told about the nation's first ADULT autism clinic serving adults disabled with autism in California and we were given some stunning information about autism's impact on that state: "Most people with autism in CA are three to 18 years old so the problem of addressing their needs as they become adults will only grow."

"Besides their medical needs, the costs of their social services are great too.  The California Dept of Developmental Services says the state spent nearly $11,000 in 2007 on services for each child and young adult with autism.  After age 21, those costs more than triple when the state starts paying for food, shelter, and transportation expenses the parents used to pay for."

The doctor at the adult clinic said that his service is "a life preserver in a sea without many landing spots." 
 
Not once does anyone answer the obvious questions:

Where are all these autistic kids coming from?
Why is this the nation's FIRST adult autism clinic?
Why don't we know about 30, 40, or 50 year olds with autism?
Why aren't there services for adults?

And last of all: |

How is CA ever going to provide for the tidal wave of young autistic adults about to descend on social services?
 
As far as the ordinary viewer in California is concerned, this has got to raise concerns.  Someone is going to have to foot the bill for all this autism.  The money from the DDS in CA comes from the taxpayers.  How come no one ever warned them these young adults with autism were coming?   How come as nation we haven't made stopping the epidemic our number one priority?

How does any of this make sense in light of the fact that officials have told us for years that there's been no real increase in autism?


 
And just in case you might think that this is only California's problem, watch the news video from from April 2 on CBS 42 Montgomery, AL:
 
In this we were told that "In the last 10 years, the number of people in AL diagnosed with autism has increased by more than 3,000 percent."    Furthermore the news anchor announced the topic saying, "The condition is known as autism and it's reached epidemic proportions."
 
They gave lots of grisly details about what autism is doing: "What was an undiagnosed condition just two decades ago is now found in one in every 110 children." One mom said, "Autism is a life long disorder.  You don't grow out of autism. You don't get cured from Autism. And all these children are going to become adults with Autism."

"State Representative Cam Ward doesn't need the annual reminder he stares the condition in the face everyday while home with his own children. Ward has been a champion in Montgomery helping secure the little money that programs receive.

"Ward says he understands the need for the expansion of services to better accommodate adults living with the disorder.

"We have to look at transition services, job training, all across the spectrum. We have to look at services from age 3 to death. So yes we do have a lot to do."


What is most baffling about both stories is that NO ONE CAN EXPLAIN WHY THIS IS HAPPENING.  Health authorities and doctors have watched the numbers pile up higher and higher and continue to scratch their heads, almost proud of their ignorance.
 
They continue to "study" autism going up one blind alley after another.  Media people take their cue from medical community which barely notices autism is happening and never shows any alarm.
 
An even more incredible aspect was presented on April 3 Michigan Public Radio. They featured a talk on a MI State University study showing that special education teachers need training in working with autistic children: 
 
"A Michigan State University study finds many special education teachers don't feel well-equipped to teach children with autism.

"Preliminary findings from the MSU study show some special education teachers don't feel confident in their skills, and many say they don't have high expectations for their students."
 
For years the federal government and medical experts have pretended that all the autism is just the result of "better diagnosing" by doctors.  However, these stories show us that autism is something we're simply not prepared for.  And although they love to take credit for the explosion in autism, no expert has ever shown us a comparable autistic population among adults.
 
It is so clear that no one will report on this as A CRISIS until we're flooded with autistic adults who have nowhere to go.  No one will seriously demand answers until the cost makes it an emergency. 
 
As long as doctors and health officials continue the façade that nothing is really wrong, the members of the media have no choice but to resort to this senseless reporting.  (And I'd like to tell the announcer in Montgomery that NO OFFICIAL HAS EVER CALLED AUTISM AN EPIDEMIC.)
 
Anne Dachel is Media Editor of Age of Autism.

Comments

Christina Adams

Hi--I wrote about this in the LA Times Magazine in 2004 or so. I also wrote about it in the LA Times newspaper in 2001, and other places since then yearly. I am sure I mentioned the increase in my book of 2005, A Real Boy: a True Story of Autism, Early Intervention and Recovery (Penguin). The media people who were concerned published what I wrote. The people who found autism distasteful didn't want to hear about it. I don't think that's changed much. I helped last year with a vote before the VA state legislature, who at the last minute refused to hold a vote about insurance coverage for ABA because they wanted to avoid taking a position (cowardly). It's all about money....and we just have to keep pushing. Best to all, Christina Adams

K

Unfortunately, very few magazines or news articles like to write about the 40 and 50 year olds and their struggles. At the nonprofit Devereux (http://www.devereux.org ), though, we have had this conversation for years and have been providing services since 1912 (read this article about Betty Jo, who came to Devereux in 1946 http://bit.ly/BettyJo ). Bancroft, another nonprofit, has been in New Jersey since 1883. As Ray mentioned, there is a long waiting list for community-based services in this state. The lack of space is a problem and will continue to grow as the children leave school. We have all seen an increase in the demand for our services.

Not only should this conversation on adults with autism grow louder, but we need to focus on the types of services too. Don't just talk about medical care but also the programs that will allow your son/daughter to live as independently as possible: community based residences and strong vocational programs.

Allie90

True story today, but will make you think it happened 20 - 30 yrs ago.
A friends son who is in his late 20's needed medical attention for severe seizures two nights ago. So the parents had their son taken by ambulance several times to the hospital. Only to be turned away each time, because the hospital stated they don't treat people with autism. While in the ER, the young man with ASD, behaviors became so much that he kicked a policeman. So the policeman decided to arrest the young man, and handcuffed him face down on the floor and off to county jail. The young man with ASD and seizures was arranged in Court today. Isn't that a lovely place to decide how to get medical attention???

Diane Hunter

The exponentially growing number of children affected means more and more families living very different lives than the family experience just one generation ago. It doesn't just affect the immediate family but extended family, friendships, social gatherings, schools and communities. This is a public health issue of the highest priority. It's going to take us joining together to speak for our children.

I believe these kids are here to teach us to clean up the mess we've made of our environment and to stop putting toxic chemicals into our bodies. With each generation, our bodies have taken on more and more toxins and the result is children are now being born with injured systems. This will not go away until our voices are heard loud enough.

We parents of children with autism know the truth. Our kids are sick, injured and paying the price for the excessive abuse on our environment and what we put into our bodies in the form of chemicals in our food source, drugs and vaccines.

I'm in this to help heal my child and to shine the light on the darkness where so many are afraid to look. I'm ready to speak for my son.

My two cents...

Raymond Gallup


Per.........

" ...required a "eugenic solution". "

"They're working on it."

Posted by: bensmyson | April 06, 2010 at 09:17 PM

You are right especially in the USA with the health plan just passed. More IRS agents will be hired and the Dept of HHS including the CDC will be in charge of your medical care including more vaccines and drugs.

A eugenic solution is not far behind once the Federal government has complete control and they can suspend the 10th amendment in the US Constitution providing for states rights. Once states rights are gone then religious exemptions for vaccines, etc. will be abolished by the Federal government.

bensmyson

" ...required a "eugenic solution". "

They're working on it.

Cindy Griffin

AnaB - ah, but the issue is, the community is growing so fast it's harder and harder to find people truly outside of the community - and I do love that Moonstonemama is an "outsider" who obviously cares - and is taking it into the next generation!

As a homeopath, we've always been considered "fringe" - but rapidly the fringe is becoming the whole tapestry as more and more people are failed by the medical world, or, in the case of autism, often fare badly because of it, or in spite of it. So it is that as the population of this "previously misdiagnosed condition" (HA! We know better) is growing by leaps and bounds, truth will come to the surface. And a very unhappy truth it already is. Enough is enough. Look at WHY its growing without BigPharma involved in the investigative process, stop the HOW of the kids becoming autistic and financially support those who can actually fix the kids already autistic! But that would be a perfect world, would it not? Somewhere in all the healthcare talk, there's nothing about vaccines except greater enforcement, including "in home visitations to educate" (shouldn't that say "INDOCTRINATE" and "INNOCULATE" those nasty parents who have stopped vaccinating due to autism or other stuff?), and there is nothing to support this growing and maturing population.

We're concerned that this will get far worse before it gets better.

Raymond Gallup


Per............

Ground broken in Hanover for home for adults with disabilities

http://www.dailyrecord.com/apps/pbcs.dll/article?AID=2010100329123

The following:

"What makes this project different from other housing projects for
people with disabilities is eight of the 12 residents will be coming
straight from the Morris County area instead of from a 5,000-name-long
waiting list kept by the state, Kramer said. The wait time for those on
the state list is more than 30 years, he said."

So in NJ there is a 5,000 waiting list that is more than 30 years for group homes and residential centers.
Our son is in an out-of-state residential center and we got him in by paying a lawyer with a speciality in education/disability law and paid $5,000.00. That is your option if you have a child/adult with aggressions and you can't handle the child/adult.

Otherwise you will be on a waiting list which I'm sure in other states can be as long as the one in NJ.

Ray Gallup

Sylvia

Thank you SO MUCH Moonstonemama! There aren't a whole lot of people who care that aren't personally effected by autism. The fact that you have chosen to support our kids means the world to me! You are most certainly a valued member of our community. I only wish there were more people like you! But people will see your example and follow your lead, which will have a ripple effect on society. Thank God for people like you!!!!!

Eileen Nicole Simon

My son is now 47 years old. He suffered trauma and anoxia at birth. I have been researching the literature for more than 40 years on how oxygen deprivation at birth can prevent normal language development - it most severely affects the auditory system. My website has been up for 10 years now at:
http://conradsimon.org/
where I have posted the long-forgotten evidence.

Safety of all perinatal interventions needs to be questioned, which I am trying to get the IACC to do.

nhokkanen

Are adults with ASD's just one variation on the theme of toxic environmental exposures?

Can a lifetime of bioaccumulating harmful chemicals eventually push an adult over the toxic tipping point?

Kristina

Special education teachers feel unprepared because there are a lot more autistic kids. It wouldn't make any sense that they'd feel unprepared if there were simply better diagnosing. They teach the child, not the diagnosis.

Adriana

The numbers have simply gone up. There was nowhere for the current child population with autism to have hidden 100 years ago in the US, not to mention an equal number of adults with the disorder.

I frequently post this chart from Robert Whitaker's article (now book) on the parallel epidemic of mental illness: http://psychrights.org/articles/EHPPPsychDrugEpidemic(Whitaker).pdf

Institutional and SSI/SSDI stats for mental disability per 1000 of the population from 1850 to 2003:

Year ------------------rate per 1000

1850----------------------.2
1903-------------------- 1.86
1955-------------------- 3.38
1987------------------- 13.75
2003------------------- 19.69

They always say that adults with autism must have been hidden either among the population with mental retardation or schizophrenia. But rates of mental retardation have been accounted for, it's not possible. And even if every other form of mental disability like schizophrenia, "manic depression" (which used to be rare as well), brain injury, etc., were displaced, there was still nowhere for 1 in 100 adults and 1 in 100 children with autism to have been tucked away out of sight-- not in public or private institutions, not within the ranks of those receiving disability payments once social welfare programs began in the US, etc.

As we know, it's even worse in the UK. In 1920, the population of the UK was roughly 46 million. At that time, Winston Churchill announced that the rate of mental illness in the UK (which would have had to include schizophrenia, clinical depression, dementia, combat brain injuries and shell shock cases from WWI, alcohol-induced brain damage, etc.) had risen untenably (to 150,000) and required a "eugenic solution".

The population of the UK is currently about 61.3 million and the number of children under 16 with autism ALONE in the UK is conservatively estimated at 210K.

Benedetta

I have a 24 year old and the government nor anyone else has had to spend a dime on him yet.

Well that is not true. I just remembered when he was four - County Child Development Center took him once a week for about five months.

I guess we might count special ed classes in school.

But soon the state will pay for a test to see what my son's interest are.

Wonder how much that cost?

I wanted to get him on Medicaid - but then I found out no doctor will take someone on medicaid - so there you go.

Make a big mess in people's lives and then hide in the wood work of big government.

Darian (nickname)

The lack of adult support is appaling in any state! There is litterally nothing there! Meanwhile all along the spectrum we age, and who do the parents have to turn to. Who do we the kids have to turn to? In my state I am it. I am lauching a polet project for us aspies in a few months. I am gathering 10 older aspies, those who have lived on thier own and been out in the world for sometime who wish to volunteer and mentor younger aspies, those about in middle school. Since we learn better from those like us, they would be being taught by someone who is already sucesfully lives on thier own, who can describle and teach the child how it can be done and the skills needed in a way the child can understand. They will also help the child with skills, social and basic, with interaction and suggestions of the parents being talked about. I think that would be a huge help that would not cost anyone any money. As it kicks off I will give you more updates.

It is apalling however that I by myself am the only thing they have, to advocate on thier behalf, to find services for them or create them when there is no one who will take them! I can't do this on my own! Is there no one out there who gives a damn and is willing to help me run with this ball? These kids deserve better than to be injured by this goverment and then get f8909ed by them later!! Something has got to be done to rememedy this situaction! And time is short!

For those 1-150 from 94 are graduating next month!

VMGillen

California is not the first, sorry.

Eden, in Princeton NJ, has been running a geriatric program since my little guy, now 18, was about a year old.

In New York EDEN 2 operates adult programs and residences (IRAs) - and soon (within 5 years or so) those adults will be seniors.

I've seen tremendous change, thanks to the cute little kids and deep wellsprings of "hope for a 'cure'."

However, those kids don't stay cute and little forever, and it's hard to drum up support when your group is older, bigger, and generally viewed by society-at-large as scarier and not likely to improve.

We parents lose a bit more energy (read:activism) as each year goes by. Going forwad, I fear the biggest impetus for adult services will come from State & Local government, as well as private agencies. And who knows what we could end up with!

Craig Willoughby

Moonstonemama,
Because you care and do not have children like ours, because you care that our children are suffering, because you care that there IS an injustice being done to our kids, I do believe that makes you one of our community. I, for one, welcome you with open arms.

Rae

Over 30 years ago when autism was still very rare, close friends of mine were struggling to raise a profoundly autistic child with aid from various social services. I asked them what would happen when their daughter grew up, and they informed me that the diagnosis would change to schizophrenia but all else would stay the same. I was astounded at both the information and the casualness with which they accepted it. Even back then, it seems, the bureaucracy knew how to make autism "go away."

Gatogorra

Thank you, Ann.

I think the "almost smug" attitude of some authorities in saying "we don't know what causes this" is the sense one has looking at someone patting themself on the back for playing the party line they've been fed by those who caused the epidemic.

It's happening in other epidemics as well, like the brain cancer cluster in Palm Beach County, for which the very state authorities who are supposed to be entrusted with testing the environment are also no doubt partly responsible for the illnesses:
http://www.palmbeachpost.com/search/content/local_news/epaper/2009/06/18/0618cluster.html

Excerpt:
"Even when scientists determine an elevated concentration it can be very hard to pin down its cause.

'Cancer is a tricky one because if people are exposed to one cause, it may not show up for several years,' said Dr. Youjie Huang, a state chronic disease epidemiologist.

Environmental factors - particularly pesticides used at surrounding farms - came to mind for Becky Samarripa, whose daughter Hannah, now 15, was diagnosed with a ganglioglioma in December and later had it removed.

'You can see people out there in haz-mat suits spraying," Samarripa said. "We moved out here because of the fresh air and the space and the trees. We thought it was a healthy environment for our family - better than city and smog and being next to I-95. Maybe not.'"

Moonstonemama

I just wanted to write and say that I care. No one in my family has autism (and I pray that no one ever will) and yet I read this blog every day, I plan on taking my daughter to the next Autism awareness walk in our community and I spread the word about what I think is one of the biggest injustices our world has seen. I care and yet I am not a part of your "community".

Maurine Meleck

Nobody will ever be able to say that Anne didn't warn us. Love ya, Anne.
Maurine

Kristine

I am pretty sure the public will *never* wake up to this mess. Unless someone is personally touched by autism, they will never understand. I believe people still think autism is caused by bad parenting. Less people say this but lots of people believe it and they think "never could happen to me". Our kids will be abandoned by the system. First, there is no system for them. Second, there is not money to support our numbers. There just isn't. The blame will be shifted back to the parents.
I maintain that a person saying the increase is not real is a very very dangerous position to have.

mary

Taxpayers are already footing the bill for autism. In my county, taxes are going through the roof while general ed class sizes are increasing. I hate talking about how much autism costs because I fear that eventually when all the extras are cut for the "regular" kids, the backlash will start against the special ed kids. Then special ed will be cut completely. Kinda like what happened in Nazi Germany.

Just like anonymous said "we must find a way to live forever."

Autism is an epidemic

I agree with you 100%, Ann. Nobody will pay attention to this autism epidemic until it starts to cost taxpayers billions of dollars when these kids become adults. Our government simply will not care about this autism crisis until they realize the amount of money that will have to be paid out for disability checks. Right now the autism epidemic is out of sight, out of mind for these governement agencies, because the parents are dealing with this autism crisis right now. Hopefully, in about 10 more years or less they will have to start paying attention. I can't wait for this rude awakening to happen.

Andrea

Anytime this subject of adults with autism comes up the epideminc deniers go bananas. They scream "autism has always been with us". Yes, I suspect autism hade been around since the time Kanner first coined the term. Why would this doctor suddenly notice these patients with such odd behaviors. No one noticed before him? Autism could have been around longer than when Kanner took notice, but it had to have been so rare no medical professional thought to further explore it. Plain and simple it was rare and uncommon.

We have numbers that probably held relatively stable and unchanged until something happened in the last 20 years. Now, the numbers have exploded and we have no explanation. We've all seen them- 1 in 10,000. 1 in 5,000. 1 in 2500. 1 in 1000. 1 in 166. 1 in 150. 1 in 110. How long can we go one like this? We have had very poor attempts at explaining these thousands of folds increases- better diagnosis, broadening of diagnostic criteria, stigma-removal etc..

I wish the people who deny there is a true explosion of autism cases would come to their senses. Schools have been bearing the burden trying to manage and teach these kids. Now, we are seeing issues with police officers and autism- they are called to schools to subdue these kids. They encounter them on the street and don't seem to understand what is "wrong" with these kids. They sadly have entered a home to find a beaten near death caregiver and a frightened large young adult male cowering in the basement of that home. And there have been other societal situations we just have never encountered before. Can't we just be honest for the sake of our children. We simply don't know what we are doing- because we have never had to do it before. Autism is growing up and we are just starting to see it.

So for those people who go ape shit when people like Anne write these articles questioning where the adults with autism are please get out of your denial and realize something is going very wrong with today's children- actually children born in the last 20 years.

Even Tom Insel seems to get it. He was speaking at MIT last week and said this:

"The biggest need ... in the field, in the short run, is to identify the heterogeneity of this disorder and get away from thinking of it as a spectrum of a single disorder and to begin to understand — if this is 10, 20, 40 different disorders — how we can parse them and identify them."


Problem is he wants to blame genetics instead of pursuing what is happening to make our genes go haywire and cause "autism".

Autism has been around for a long time jsut not in these numbers.

Thanks Anne for all your repeated warnings about this very real crisis.

anonymous


Scenario. In addition to having all these adults coming into the system, when the government "crunched their numbers," they used the population, not thinking that 1:100 not only will not pay into the system, but will begin taking out of it at a very early age.

When the proverbial "sh*& hits the fan," something drastic will have to be done. If one thinks practically, it becomes obvious that whatever is " decided", it will not be good for anyone with the diagnosis or their family. Institutions will be back. Parents do not live forever and they are worn down by their 24/7 home job.

Even the wealthiest of families, who will be the only ones able to "buy a spot" after years of waiting, will pay up the nose for substandard and mediocre care. The various scandels in the papers regarding schools treatment of the children will be nothing compared to what will happen behind the walls of an institution.

A book could be written even now outlining just how Pharma could use this "group" to test their experimental drugs. It will be just like the good ol days. ...

We must find a way to live forever!

AnaB

Great article Ann. It has always incensed me when they act like there have always been this many people with full syndrome Autism while at the same time writing stories about the explosion of Autistic children entering adulthood & what will that mean...The simple truth: outside of our community nobody cares, nobody cares, nobody cares.

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