Autism: “Who’s Going to Care for Him?” or “A Tidal Wave is Coming.”
By Anne Dachel
On Friday, Jan 22, I started out reading a piece on Lisa Jo Rudy’s autism blog. The title was Autism Epidemic! ...Or Not? (HERE) It was easy to predict what I’d find there. Even though autism is now a household word and everyone knows someone with an autistic child, Rudy and others are still scratching their heads over what that really represents. Did we just mislabel these kids in the past or do more kids actually have autism? Rudy does make it clear that if the increase is real, genes alone can’t be responsible since there’s never been a genetic epidemic in human history. There would have to be an environmental trigger. Or as Rudy put it, “Logically, something in our environment is causing an epidemic - and that something must be discovered and ended.” This of course brings up the claim that the “something in our environment” involves the ever-expanding vaccine schedule. It’s the one common factor that so many thousands of parents and more and more doctors and scientists point to.
While officials are adamant in saying that vaccines don’t cause autism, they can’t give us any other environmental factor as a possible trigger. Furthermore, if a true increase in autism is admitted, spending millions looking for those elusive genes that cause autism would definitely be seen as a colossal waste of time and money.
The most recent example of autism gene research making the news was on Jan 22 from the Reporter, Vanderbilt University Medical Center’s Weekly Newspaper (HERE)The title was Investigators seek to trace autism’s genetic architecture and the article was devoted to telling us about how $17 million in NIMH funding is being spent on the search. Lead Vanderbilt researcher, James Sutcliffe is studying genetic mutations involved in autism. I couldn’t find any reference to autism being a tragedy overwhelming a generation of children and Sutcliffe used words like ‘absolutely fascinating’ when describing the challenge he faces. There was no mention of an environmental factor at play here or any sense of urgency in finding answers. In fact, we’re told they have 1,000 different genes to go through in their research and Sutcliffe left us with the warning, “This is one step in a long story.”
Sutcliffe must feel like he’s got all the time in the world to look for autism answers because he made no reference to the staggering increase in the number of affected children. In fact, the Vanderbilt piece gave us an autism rate of one in 150. It seems that the cutting edge researchers on autism haven’t heard that the numbers have been updated to include one percent of U.S. children.
Meanwhile in the real world where we all live, autism is getting new attention. It’s becoming a concern because we’re starting to think about what’s going to happen when we have autistic adults everywhere and about what that will cost. For years, we’ve heard about children with autism flooding our schools and their need for services. Rarely has anyone been alarmed. Most of all, we haven’t heard projections about what it will mean when the children with autism became adults, dependent on the welfare system for their support and care. Our health care officials have led us to believe that any new autistic adults would go where autistic adults have always gone—wherever that is. The word CRISIS has never been used by any official whenever the Centers for Disease Control and Prevention has given us the latest, ever-increasing autism rate. We have been continually reminded that all this autism is being brought to us because of “better diagnosing” by the medical community.
Slowly, that’s changing. We now have a growing number of people in their twenties with autism and they have an acute need for services. We’re waking up to the fact that we have nothing to offer them. It seems we’re beginning to realize the real scope of this disaster and it’s obvious we don’t have years to look for defective genes to blame .
Major news outlets are starting to talk. Recently I saw amazing reports on this topic. Channel 4 in Pittsburgh had a week of autism coverage, and while they could give us no reason for the increase, they sounded very concerned about the number of autistic children we have today.
Jan 20--As Autism Cases Rise, So Do Costs The Pittsburgh Channel “Some 25,000 people in Pennsylvania have an autism diagnosis. . . . the cost for each person with autism is $3.2 million over a lifetime.”
Jan 21--Autistic Children Change Families' Lives The Pittsburgh Channel " ‘There isn't a second of a day, ever, that autism isn't there. I mean, autism is there constantly. I mean, it's like a pall that hangs over you 24 hours a day,’ Mark Wallace, Matthew's father, said.”
" ‘It can be tough sometimes. It's hard not to hear him screaming about things that aren't going his way or going right or are out of his control. But it can be OK sometimes. He's very playful and fun,’ Seiff said.”
" ‘He's going to always need supervision. But he's staying with me until I die,’ Barbara Wallace said. ‘My fear is what happens when I die? Who's going to care for him?’ "
Jan 22--Lack Of Facilities Poses Challenges For Autistic Adults The Pittsburgh Channel
“The shortage includes everything from daycare to a permanent residence for adults with autism.”
“More than half of those diagnosed with autism -- 54 percent -- are in elementary school.”
Most frightening was this news video on autistic adults:The Pittsburgh Channel In it we heard: “Lack of adult services includes every aspect…day care, work place and even a permanent residence for them.”
A father of an autistic 17 year old calls the prospects for the future, “terrifying.”
“Dr. John McGonigle says a tidal wave is coming."
The mother of a teenager with autism asks for answers: "There are not enough places. I'm not a residential treatment facility basher. What I'm saying is this -- there are going to be millions of children throughout the United States with autism diagnosed with other disabilities. What are we going to do with them? Where are we going? What about the quality of care for the children?'"
And on Friday, January 29, the Pittsburgh Business Times ran the story, Allegheny County Seeks Autism Therapy Providers. The business sector seems to be paying attention to autism. Certainly there’s a demand for workers to address the needs of so many disabled individuals who weren’t here in the past. The Pittsburgh Business Times announced, “Rising demand sparks need for more [therapy providers]” as a subtitle. I should be used to it by now, but reading shocking information like this simply amazes me. How bad will the numbers have to get before we do something?
“Autism is a group of developmental disorders that affect communication and social skills. In 2005, there were 19,862 people with autism in Pennsylvania, and the number was expected to reach at least 25,000 this year, according to a state Department of Public Welfare survey that was released in October. Most of the people with autism were between the ages of 5 and 12.
“Allegheny County led the state in number of autism cases at 2,235 in the survey, followed by Philadelphia’s 2,142 and Montgomery County’s 1,109. Autism treatment costs last year in Allegheny County alone totaled $30 million.”
There is something fundamentally wrong when the media can give us such frightening information with absolutely no explanation.
Another news source raising serious concerns about autism was, of all places, the New York Times. I really am stunned at the latest Times coverage, especially considering how they reported on the updated rate for autism on Dec 18, 2009. In Study Finds Increased Prevalence of Autism (HERE), the Times talked about this as if having one percent of children with autism wasn’t anything to worry about. Reporter Benedict Carey cited Catherine Rice of the CDC who merely said, ‘A simple explanation is not apparent, and a true increase in risk cannot be ruled out.’
Carey also wrote, “Prevalence estimates for these disorders have increased so sharply in recent years — to 1 in 150 in 2007, from 1 in 300 in the early 2000s — that scientists have debated whether in fact the disorder is more common, or diagnosed more often as a result of higher awareness.”
Carey neatly ignored the reality that in the 1970s, autism affected one in 10,000 children and most Americans had never heard of the disorder. He also included comments like “Prevalence estimates vary depending on how studies are done” and “Almost 40 percent of the children who had received an autism spectrum diagnosis grew out of it or no longer had the diagnosis.” All this sounded like officials aren’t certain there really is more autism.
Carey gave us lots of reasons not to panic about the latest autism numbers and we certainly didn’t hear from any experts or officials who were worried.
Then on Jan 22, the NY Times published a piece by Walecia Konrad, Dealing With the Financial Burden of Autism (HERE). This story was about the cost of autism and Konrad didn’t tell us not to worry. She included Jeff Sell, vice president of the Autism Society of America and the father of twin sons with autism. Sell described having to navigate through the funding provided by insurance coverage and Medicaid for services for his sons.
The Times reported that the cost of treatment for one child with autism can run from $67,000 to $72,000 a year, according to a Harvard study. It was noted that this same study (actually published in 2006) predicted that the lifetime cost of care for one person with autism would be $3.2 million. This is rarely talked about in the press but it’s something to consider, especially with the knowledge that one in every 110 children, one in every 70 boys has autism
What really surprised me about the Times piece was the inclusion of comments made by Pat Kemp, executive vice president of the advocacy group Autism Speaks. Kemp was allowed to voice grave concerns about autism. He was quoted saying, ‘The numbers are just amazing. Unless we attack this like a national health crisis, we’re going to have an economic crisis on our hands.’
Jeff Sell’s sons are 15. Where will they be in five years, along with thousands and thousands of other young adults just like them? Somehow we’re going to have to come up with answers. For years, officials have refused to aggressively and honestly address the cause of autism. There haven’t been demands for answers. I see that changing when the need to know the cause of autism is tied to the devastating cost of autism.
Personally, I’ll want an explanation from all those people who assured us that autism was nothing to worry about and told us that parents just need to recognize the signs earlier. I’ll want members of the media to go to the experts who’ve long claimed that autism isn’t on the rise and ask them why they lied. All those doctors and scientists who pretended autism has always been around should be the first people we turn to. Paul Offit and Julie Gerberding along with so many others will need to explain why we’re so unprepared for the tidal wave of adults with autism about to descend on us.
Anne Dachel is Media Editor for Age of Autism.
Wow, finally, there is awareness of a serious problem! Oh, but the government will take care of us the majority of special needs parents and the ARC says! Oh, but, NO THE GOVERNMENT IS GOING BANKRUPT SO GOOD LUCK!!!!!!!! The ARC has seriously hurt this situation by promoting dependence on a vehicle that will be running out of fuel, which will halt aid for those adults with special needs, etc... I'm sickened by the mindlessness of parents and others for constantly promoting the government, the government, the government! The government could care less and they are running out of $$$$$$$$$!! WAKE UP AMERICA!!! Our only hope is the communities, businesses including churches to help. In conjunction with this, we need to have farms for our special needs adults. There's your solution! It's really simple.
Posted by: Elizabeth | February 21, 2012 at 02:27 AM
rileysmom,
Thank you for the comment on the comment.
If Toyota were the CDC, they would expect the nation to be calm and confident while they "shrug and play stupid" about the accelerator problem for the next 20 years.
How many severe problems with the Toyota's so far?? I would guess less than 100.
Not 500,000.
The world class medical fraud of the Autism epidemic is far, far, beyond tobacco and Aids. In ancient Rome, the elite had indoor running water provided by lead pipes, which eventually failed them.
God bless you and yours.
Posted by: cmo | February 02, 2010 at 09:24 PM
cmo- last night I had a class. The gentleman who teaches the class is not involved in any way with the vaccine debate, autism. We were sitting around during a break and I read your comment to him. Told him I am an autism mom and that I am also a witness. That I've been called crazy, ignorant and blind to what I actually witnessed. That my child doesn't suffer physically and I should just except his autism for what it is even though I know he wasn't born this way.
First he laughed and second he said "hmph, when you put it that way, it makes sense. What if no one recognized that ppl in Toyota's were dying and being injured by DEFECTIVE "pieces or parts" of the car? What if ppl just said it's a coincidence?" He gave you high marks for a great comparison.
Just thought I'd let you know that your comment was greatly appreciated and very useful.
Posted by: rileysmom | February 02, 2010 at 01:20 PM
It's Lisa Jo Rudy. Could we really expect anything else out of her?
Posted by: eileen | February 02, 2010 at 12:30 PM
cmo-you made my day with that comment about Dr. Paul. It will stay embedded in my head forever. I loved the irony. So silly yet makes so much sense Knowing the BS that comes out of the "Good Dr.'s mouth". I honestly believe that my children were vaccine injured (I also know that some of their problems are genetic) I will never vaccinate my children again.
Posted by: Sherry | February 02, 2010 at 09:38 AM
Thank you all for your helpful comments. And you're right I had forgotten that my daughter did get those first few shots in the hospital when she was born! No mercury exposure from Mom but we very well could live in toxic zone of some sort. Thanks again.
Posted by: Tobi Drabczyk | February 02, 2010 at 08:34 AM
Benedette, there is litterally nothing for autistic adults. For the High Fuctioning, there is not even so much as a whisper! And it irritates me to no end! Here we have a group of young adults, alot of them with high IQs and great ideas, who yet if thier parents were to die tomorrow, would not be able to live on thier own or take care of themselves!
My better half has an IQ of 210!! However, he does not have a checking account, knows nothing about budgetting, never had a job, doesn't know how to clean, doesn't know how to cook, and there are no supports out there to teach someone on the spectrum these things in a way we would understand them!!
And so, because of our intelligence, we get thrown behind closed doors. We are told we are not autistic enough to count or matter. We get put into group homes, and all our intelligence and all our potential goes to waste as we waste away in places we are far to high fuctioning to belong!
It is not right!! All we need is just a little push and we could be productive tax paying citizens! Because I managed to get the services, that is what I am now! It hurts me to see my fellows treated as though because they have an IQ thier suffering does not matter.
Posted by: Darian (nickname) | February 02, 2010 at 07:45 AM
Tobi, there's a good chance your daughter has Lyme disease. http://www.lymeinducedautism.com/
Posted by: Kristina | February 02, 2010 at 03:36 AM
"cmo," LOL! Thanks for the laugh.
"A bit off topic, but with the Toyota accelerator concerns, I went to the Dr. Paul & Nancy's "car chat" website. Just as I suspected, the stuck accelerator's on Toyota's are just a coincidence, and has nothing to do with the car. It is certainly not to be a safety concern.
Dr. Paul said that even 500,000 Toyota's going in the ditch or hitting a wall means absolutely nothing, and could be due to a genetic stomping problem of the drivers. More money is needed for research to look in this direction, and later stomp out the stompers."
Posted by: Kristina | February 02, 2010 at 03:33 AM
I just worked the gross figures out. . . .
Pennsylvania 2008-209 budget =
$61,300,000
Estimated Annual expense per person with Autism $70,000 x
People with Autism in PA 25,000
Estimated Annual Autism maintenance bill ONLY for Pennsylvania =
$1,750,000,000
the annual state budgets are not going to come close to covering this.
well,
If we used all of the State budget for this (as if that was possible, hahahaha)
they’ed still need
$1,688,700,000
And to give some perspective, even earths’ three wealthiest people combined monetary worth fall short of that ($112,000,000).
Just to shake out ANY inkling that the Federal Gov can care for our kids, the entire USA 2008 budget would cover Pennsylvanias bill.
$2,979,000,000
. . . oh!, with a little left over for another state.
$1,229,000,000
geeeee… that’s just one of our 50 states annual Autism costs?
Is there a world budget?
MAKE AUTISM STOP
Posted by: [email protected] | February 02, 2010 at 02:02 AM
While I haven't quite given up on seeing the day that we will hear those explainations from the likes of Gerberding and Offitt, I have found that my time is better spent working on building alliances in my own community with the hope that my son ( who is now only 11) will have a place to live and work when he is an adult. Those organizations that are now providing residential and vocational services to adults will confirm that they are completely uprepared for the coming tsunami of adults with ASD. They currently serve a very small number of individuals with autism and they are hungry for training and direction.
I just don't have enough energy left to fight against the vaccine naysayers, when there is so much work to be done to assure the futures of all of these beautiful children. And truth be told, as much as I love my precious boy, I know I will not have enough energy and strength to care for him properly as I reach my later years just when he reaches his physical prime.
He is a smart but profoundly disabled young man and he deserves a meaningful and dignified life where he will be challenged and cherished.
Posted by: Ben's mom | February 02, 2010 at 01:21 AM
@ A Friend...
http://www.cdc.gov/vaccines/recs/schedules/downloads/child/2010/10_0-6yrs-schedule-pr.pdf
If you go to the first 6 months and count up each induvidual vaccine...say for instance DTaP. that has 3 different things in it. Rotavirus has 2 of the strain. IPV has 6.
When Riley had MMR, Verivax and Prevnar 7 in one day...that adds up to 11 different things being shot into his tiny body at one time. If you break apart the components and each virus and/or bacteria...it adds up to 69. Main lined in with aluminum, formaldahyde, etc. Why? I think combo vax's are poorly thought out and misused by some doctors...we had one such doctor.
Posted by: rileysmom | February 01, 2010 at 11:33 PM
Ms. Dachel's quotes of James Sutcliffe and other experts reminded me of something Robert Bork said when he was nominated for the Supreme Court. He said being on the Court would be an "intellectual feast." He got in a lot of trouble for that comment. The Court's decisions affect the life and work of millions of ordinary people. Bork never recovered from the image that he was living in an academic world divorced from messy reality.
We appear to have the same situation with our autism scientists today. Always expensive new studies, with the latest technology, following the hippest scientific trends, producing "fascinating" results. And as far as anyone can tell, not the slightest hint of an understanding that autism is a national emergency that is bankrupting families and shattering dreams, and that people want help. An "intellectual feast" indeed.
Posted by: Schoolteacher in NYC | February 01, 2010 at 10:48 PM
Toby, my second child was given vaccines the day of birth WITHOUT MY PERMISSION.
Unless you had a home birth, I would suspect that your daughter did indeed have some vaccines. I heard only years later (from a nurse) that hospital staff had a policy of trying to vaccinate babies whose mothers said not to.
I refused to let child #3 out of my arms, having learned my lesson all too well.
If your daughter had vaccines the day of birth, then had ear infections, followed by rounds of antibiotics, followed by diarrhea/constipation on introduction of dairy products to her diet (especially if she was not breastfed), then you have a classic recipe for autism.
Posted by: Taximom5 | February 01, 2010 at 10:16 PM
FYI
My last post was not meant as a joke.
This is serious business.
It's time we, as a society, decide how we plan to deal with this.
If we as parents fail to get anyone to hear us, boxes for our children will be a self fulfilling prophecy.
SOLDIER ON!
Posted by: Tim Kasemodel | February 01, 2010 at 08:51 PM
http://www.reutershealth.com/en/what do we do with them/index.html
Autism Facilities Stretched To The Limit
- Facility managers forced to "box them in".
Minneapolis MN
Last Updated: 2019-01-29 10:34:47 -0400 (Reuters Health)
The 880 autistics housed in the Lowry Avenue Wharehouse Facility were in lock up yesterday, in an emergency procedure known as the "box up". Luckily, Aventis Glaxo-Pasteur officials were on hand to administer the proper therapuetic pharmacueticals to allow the 14 disciplinary officers on hand to quell the disturbance. It was apparently started when one inmate, or client as they are affectionatley called, threw feces at another client.
In related news..........
Posted by: Tim Kasemodel | February 01, 2010 at 07:58 PM
"By the age of 6 months= 69 shots"
Did you go to the website to double check that? I'm not coming up with 69... The amount is ridiculous but not 69 ... Unless I am totally missing something.
Posted by: A Friend | February 01, 2010 at 07:00 PM
This will only get worse before it gets better. New numbers for the 2010 recommended vaccine schedule from the CDC goes as follows:
By the age of 6 months= 69 shots
By the age 0f 5yrs= 113 shots
By the age of 12yrs= 156 shots
All boys will now get the Gardasil vaccine per the 2010 Schedule
Information from Sherri Tenpenny and CDC.gov
Rudy is irrelevant with all her talk of "genes" and is this really happening.
Posted by: rileysmom | February 01, 2010 at 05:52 PM
nohakkanen - don't forget the costs of Food Stamps, Housing Assistance (if they're not living in a group home or institution) and probably Cash Assistance that all of these adults will most likely collect as well.
Everyone bitches and moans about the cost of providing therapy/service yet they seem to be unable to do the math more than one budget year in the future.
Posted by: Amy in Idaho | February 01, 2010 at 05:35 PM
To Genny GC.... There will be vaccine resistants, my older kids already are. They are fully vaccinated. My son had some trouble with vaccines though not autism, autism behaviors for periods of time after shots, YES. Allergies, APD, Dyslexia, wheat allergies, ear infections every month until vaccines stopped at 4. YES!
I remember my 5 year old Kaelyn when she was 3 months old having a round of shots. She cried hard and then went to sleep I couldn't wake her, she was so still. Nothing ended up happening, but I will always wonder how close a call that was.
With the youngest -- we did not vaccinate past a the initial and forced HepB and then the late round of Hib, DTp (but that was six vaccines delivered in two shots!) The baby did not respond well and was up all night screaming. Not long after that she got H1N1 probably from the doctors office.
We no longer do "the well baby thing." I don't believe in it! It's just a cash cow for Pediatricians.
Posted by: Cass | February 01, 2010 at 05:28 PM
.
If Lisa Jo Rudy is unable to determine whether there has been a real increase, or whether it is just 'better diagnosis' she can do a simple experiment through her website.
She can ask every family with a child diagnosed with full-on autism (not Asperger's, not 'difficult child syndrome') to send her a postcard. She can set up a P.O. box for the purpose.
One child, one postcard. For some families, unfortunately, that would be three postcards!
Then she can prepare for the avalanche of postcards . . . and try to guess whether there has been a real increase.
Posted by: PostcardPloy | February 01, 2010 at 04:38 PM
Anne, thanks for continuing to beat the drum to warn society of the financial disaster not far ahead. The 1997 autism bump turns 18 in 2015.
Take 1 million kids with ASD, multiply that times $600 a month for Social Security -- $7 billion annually for just one aid program. And adding health care for immune and GI dysfunction? Astronomical.
Will we parents be forced to march in front of our state capitols carrying signs? Bringing our kids with because we can't afford child care? That wouldn't be necessary if legislators simply listened and acted....
Posted by: nhokkanen | February 01, 2010 at 04:30 PM
To Toby D., I doubt if there are any statistics, but it appears that unvaccinated kids with autism are very few. There are some rare natural ways that can happen. Live measles, mumps and rubella diseases have been known to cause autism rarely, for example, and the drug Valproic Acid can cause autism.
Absolutely any regular source of mercury could cause autism and you may not have been aware of it- Perhaps dental work was done on your wife during pregnancy or breast feeding. Perhaps your wife was given injections for Rh negative condition. Perhaps you live very near to a power plant or a crematorium. Perhaps your wife ate a lot of tuna during her pregnancy or products containing high fructose corn syrup. My guess would be that your child was given a hepatitis B injection at birth and this was not recorded. This would be as simple, as a nurse giving it, realizing that she was not authorized to do so, and not entering it in records. If you do the Urine Porphyrin testing you will come to know if your child has mercury exposure and you need to look for ways to stop that if it is still continuing. Go to the website of Safeminds and CoMeD for information on mercury. It is always the most likely cause of autism. Good luck !
Posted by: Cherry Sperlin Misra | February 01, 2010 at 02:21 PM
A bit off-topic, but growing up together with this sacrificed generation of young autistic adults, there will be, I hope, a generation of vaccine "resistants", siblings and circles of acquaintances who are vaccine aware because of what they saw happen around them, in their own families and will not allow this to happen to their own children. I really hope so anyway.
Posted by: Genny GC | February 01, 2010 at 01:14 PM
Not surprising that Allegheny County, Pa., (Pittsburgh) has the highest number of autism cases in the state, despite being far outsized in population by its cross-state rival Philadelphia.
Researchers should focus their studies here to determine the environmental causes of autism. Heavy industry over many decades has created a "heavy metal zone" here like no other. That's certainly how Dr. Scott Faber, a developmental pediatrician and autism expert, explains why his waiting list is over a year long. Sadly, a national center for excellence in autism research is based here under the guidance of Nancy Minschew, and they waste all of their time and money on genetic research.
Posted by: Jack's Dad | February 01, 2010 at 01:06 PM
Someone once told me a great idea for group homes. You take the cost of living resources the individual gets through the state, a group of them, you buy a home with them, get that home classified as section 8. Eventually the morgage gets paid off and the next generation moves in. I'm probably not listing the details exactly correct, but it sounded like an interesting idea when she suggested it.
Posted by: AnaB | February 01, 2010 at 12:53 PM
A bit off topic, but with the Toyota accelerator concerns, I went to the Dr. Paul & Nancy's "car chat" website. Just as I suspected, the stuck accelerator's on Toyota's are just a coincidence, and has nothing to do with the car. It is certainly not to be a safety concern.
Dr. Paul said that even 500,000 Toyota's going in the ditch or hitting a wall means absolutely nothing, and could be due to a genetic stomping problem of the drivers. More money is needed for research to look in this direction, and later stomp out the stompers.
Posted by: cmo | February 01, 2010 at 12:13 PM
Denying there has been a huge increase in autism is just another way for the clueless to stick their heads in the sand. Rudy is famous for this as are several other parents. Good luck to all of them when their kids are beating the sh*t out of them, peeing in their pants at 30 years old or sitting home watching Sesame Street. They should get off their blogs and stop lying to themselves and forcing the lies down other people's throats.
Posted by: Jill | February 01, 2010 at 12:09 PM
Thank you, Anne. I don't think there can be enough wake-up calls at this point. The Thomas the Train character in the graphic is grimly perfect. What happens to the little trains when they're not useful anymore on the Island of Sodor?
Current conditions in state mental institutions are terrifying enough. I can't help imagining that it could turn into Bedlam. There's no money to care for such a mass of cases when many parents and other family are no longer around to foot the bills or physically incapable of managing severely disabled adult children.
When I think about what's happened to my health just from homeschooling for three years, I can't even imagine what it would be like if my children didn't recover and have no safe or decent (or any) services as adults-- and I'm 65, 70, etc. And of course when my husband and I are gone, there's no end game.
We're hoping for the best but have to plan for the worst as well. Though we're economically mobile and are working towards the kind of "financial security" to at least save our own children if all else fails, the best plans sometimes don't work out. And what about those people who don't have a chance in hell to dig themselves out financially? There's no net strong enough or wide enough to catch them all.
Considering the recent Supreme Court decision especially, we may be running out of time to make a stink about it. For anyone who thinks melting polar icecaps also signify certain changes in the environment, consider the possibilities if state economies grow chronically worse and there are global shortages. Caring for the disabled will tumble further down the list of priorities. The dwindling ranks of the uneffected will resent paying such high taxes for this purpose when they're scarcely able to care for their own. Public opinion will turn even further against the disabled as it always does in difficult economic times. Any prominent neurodiverse types will have to drop any overly passionate public advocacy for severely disabled in order to maintain any popular appeal-- because those armchair bystanders who presently like to feel all warm and "progressive" in toying with the idea that autism as "diverse, natural and wonderful" are going to kick that concept to the curb when it's coming out of their own leaking pockets.
Meanwhile, the numbers of effected families falling through the cracks will rise exponentially and people will be driven to distraction. Politicians "jobs"-- as far as the industries which got them into office are concerned-- will be to suppress any flares of unrest by any means necessary. Read Howard Zinn for a description of what happens to failed movements-- the activist heroics we never heard of because they were simply crushed and swept out of sight.
We can't manifest the worst case scenario by preparing for it. This is the kind of thing that won't be resolved by "thinking good thoughts" or "caused" by thinking bad thoughts; I think we have to conceive of the worst and how it could effect the most vulnerable. Some need to stop individually pretending that they're absolutely immune-- though I know what a temptation that is. Many think the movement needs to organize further and I agree. We may need to consult with experts in political mobilization instead of making it up as we go along.
Posted by: Gatogorra | February 01, 2010 at 11:44 AM
Darian;
You are right. I have a higher functioning 23 year old. He is smart enough to go to college (not complaining and I know many here on this web site would give anything to have what I have and I hope and pray that you will have) BUT EVEN SO, my son has seizures (epilepsy). There is nothing out there to help us. I have been at trying to get SSI for four years, and I do not see us getting it. I want it just to pay for the epileptic medicine. But that is not going to happen, I can see my husband and I scrapping and saving for that too.
I fear that he may find himself living under a clift unless his sister helps him, and that is not fair to his sister.
Posted by: Benedetta | February 01, 2010 at 11:43 AM
The tidal wave will strike a society significantly less wealthy than it was a short time ago. Caring for adult autistics will become a family matter since it is likely that society at large will not be willing to foot the enormous bill.
Posted by: Theodore Van Oosbree | February 01, 2010 at 11:39 AM
This was one of the concerns I had when "I don't want to put a label on him" bacame popular a few years ago. Get the label, get them them on your state's version of medwaiver, and start building creative, supporting, meaningful homes/communites now with some of the funding. As we have all seen with many aspects of this life it is apparently all up to us.
Posted by: Lark | February 01, 2010 at 11:06 AM
I'm not sure this is the "right" place to post this comment but here goes. I believe that vaccines are/have caused or triggered many cases of Autism and research needs to be done. But, I wonder if any other environmental factors or other causes are being looked into. My four year daughter never had any vaccines and she is autistic. We don't hear alot of people talking about their kids who have it who did not have any vaccine. Anyone know where I might go to read about people with a situation like mine? Are there any studies or stats that show how many non-vaccines cases there are?
Thanks very much
Posted by: Tobi Drabczyk | February 01, 2010 at 11:02 AM
I have noproblem believing that many fell through the cracks, I see it all the time as many can not get through the intake process for state services. Especially the higher fuctioning.
However, the numbers are entirely to high to be covered by that number of people who fell through. We are talking 1-110!! That can not be explained away by better diagnoses and awareness!! That doesn't even make logical sense!
Posted by: Darian (nickname) | February 01, 2010 at 10:19 AM
For more info on Minnesota's tidal wave.....
July 07, 2009
Thimerosal and Autism Rates: A Minnesota Perspective
http://www.ageofautism.com/2009/07/thimerosal-and-autism-rates-a-minnesota-perspective.html
Be sure to click on the second color graph and enlarge it to see the "tidal wave" in graphic detail! The yellowed section indicates the number of kids diagnosed with autism after 2003 but born before 2003, after the so-called removal (reduction) of mercury in vaccines.
Posted by: Tim Kasemodel | February 01, 2010 at 09:46 AM
The denial will continue as long as health officials can continue to lump all the autism spectrum disorders into one number. I mean no disrespect to those individuals who are higher-functioning (or their parents) -- they have significant challenges. But as long as the deniers can point to the higher end of the spectrum and say, "We've always had people who were (quirky, eccentric, hyperactive, whatever)..." the denial will persist.
Posted by: MB | February 01, 2010 at 09:36 AM
This is so simple: vaccines are known to cause brain damage as a possible side effect. More vaccines would equal more brain damage.
There are other causes of brain damage, surely, and other types of brain damage that do not manifest as autism.
But the point of discussion here is what will happen to these kids when they are adults.
Here's my answer: If we remain on essentially the same path we are currently on (as a society) the future includes sub par care, abuse, and neglect for our children and adults who are more severely affected.
This can be changed, but only with a tidal wave of change in our society, including:
1. more compassion for those with disabilities,
2. more money for those with disabilities, and
3. a willingness, as a society (not just individuals), to try to minimize environmental damage in the first place
A single step in the right direction can reduce suffering; a single step in the wrong direction can increase it.
In addition to vaccine awareness, one of my goals for today (and tomorrow) is baby steps toward a greener planet. Groceries in the green bags, the light bulbs that last forever (I know they contain mercury, but they reduce mercury emissions over a lifetime of use). . .things like that.
As for vaccines, no more for us thanks, even if I can't convince another living soul.
I can share what I know, but today, I can only change my own behavior.
I can be kind to other struggling children and to other struggling adults, whom I see all around me.
Posted by: Terri Lewis | February 01, 2010 at 09:28 AM
Excellent article, Anne!
I think the majority of my "autism" friends on facebook are single parents. Like Me. I don't know how I will care for my pre-teen daughter when she's an adult. Group homes have ten year waiting lists...and getting longer. Not that I want her to live apart from me. Heck, sooner than that, I learned that there's no before and after school programs for kids after the 6th grade. That pretty much forces me into part-time hours...unless I can get a posse together of parents like me to get them to expand the day camp programs for disabled kids...
The clock is ticking and the sun is setting. Dark times ahead.
Posted by: Erik Nanstiel | February 01, 2010 at 08:57 AM
The millions of dollars being spent on genetic research is paultry compared to the money being made from vaccines, which is small compared to the money that will be made from vaccines in the future. So many genes are involved in autism that even geneticists admit that the possibility of genetic research leading to any kind of treatment in the near future is slim. After all, they are still working on Parkinson's, which is the "simple" place to start for genetic solutions. That leaves me with the idea that solutions are not really the ultimate goal of the government. What they are looking for are secure "genetic markers," indicating higher risks for autism in the child, those which can be tested for in utero. At which point women will start terminating those pregnancies, at which point the rise in autism will begin to look like it is leveling out. And since women don't typically go around advertising their decisions re: terminating pregnancies, there probably won't be a way to show any of this. Genetic research is not a solution for autism families, it is a solution for the vaccine manufacturers.
Posted by: Jenny | February 01, 2010 at 08:53 AM
Prior to the 1990's Minnesota had from 5 to 10 individuals aging out of school services for autism STATEWIDE. It was pretty level for all the preceeding years.
Agreeing that the current numbers include Aspergers, it can still be assumed that the true percentage of each "graduating class" that will never be able to take care of themselves will likely be about 80%.
Last year marked the turning point that Anne is pointing out. Over the next few years, 200, 400, then 700, then over a 1000 children each year will be aging out of school autism services into adulthood each year in Minnesota alone. Approximately 6785 children (last years count) between the ages of 7 and 13 qualify for autism services in Minnesota.
Make no mistake, a tsunami IS coming, and those with the power to prepare sit back and wish it away while they make their castles in the sand.
Posted by: Tim Kasemodel | February 01, 2010 at 08:33 AM
Anne, Nobody carries this story home like you do. I've been at this for ten years now and every year I think something major will change with the government and health officals, but the true change only comes with the numbers of children diagnosed. I seem to be running into a lot of teachers lately and I always ask them the same question, " How have the numbers increased in your school?" and the answer is always, "The increase is unbelievable."
Maurine
Posted by: Maurine Meleck | February 01, 2010 at 08:10 AM
I have been harping at this at the state level for seven long years!! THe absolute and utter lack of services for adults with autism is appalling and horrifying!! I can't emphasize enough how important this is, or the fact that we are about to have a huge crisis on our hands!!
This May, THe 1994 1-150 children will be graduating highschool and entering an adult world with no way to navigate it. And weary parents have no relief of the burden. They still our the main care takers. And they are facing years of no help with medical bills to help care for thier autistic child.
There is no one to work with them, no housing or special homes specifically geared towareds helping them, the mass service industry in the states are at a loss. Already overwhelmed by the numbers they have to serve, and streching a small budget as far as they can go, many autistics slip through the cracks.
Many are on waiting lists for services and have to wait for years and years, and in fact may never get said services. THIS IS A CRISIS FOLKS!! Something needs to be done to take care of the aging population of autistics! The parents can not be expected to bare the burden alone forever!!
Millions of lives are at stake here!! We can no longer afford to wait! I would suggest everyone get on their represenstives hind quarters and raise hell about this NOW!!! Or the drain on the economy, on our parents, on the very phsyce of all those who deal with this desease will cause irrepareable damage.
*Darian's rant is now over*
Posted by: Darian (nickname) | February 01, 2010 at 07:33 AM
This idea that there were always this same amount of Autistic people and we just missed them is absurd. If that were true then the question what will happen when all these children when they grow up would have been asked decades ago, instead of being a new question being explored by various media outlets today. Autistic people didn't just suddenly start needing services but in the past, in the exact same numbers, they did not. What an absurd assumption! A society simple could not just "miss" this much autism because it still would have had to have paid for services, just labeled under a different disability and there is no evidence of that having happened in the past.
Posted by: AnaB | February 01, 2010 at 07:13 AM