Autism, Acceptance and Accountability for An Epidemic
Managing Editor's Note: Most of us are not willing to gamble that complete accommodation and acceptance are realistically possible, let alone enough for our kids, which is why we work so hard for them.
By Anne Dachel
July 12, 2011, Lisa Jo Rudy surprised me by writing a post on her blog about my story on AoA. (Age of Autism HERE)
In Do Acceptance and Accommodation Equal Surrender? (HERE) Lisa Jo discussed my objections to just asking for accommodation and acceptance for autism without demanding that we find the cause and stop the epidemic. Lisa Jo did a nice job and I was flattered that she took the time to write about my post. Here is the email I sent her.
Lisa Jo,
Thank you for your interest in my Age of Autism post. You summarized my feelings pretty well. I want acceptance for individuals with autism EVERYWHERE. I'm a mother, a teacher, and a national advocate. I work with autistic children and attend IEPs to ask for the special help they need.
My problem with only asking for acceptance is that we're inexplicably willing to leave autism as a mystery that experts just can't solve. It isn't so much that we're allowing people to cause autism; it's that we don't demand answers with a sense of urgency. We're supposed to have the best health services in the world. Our Centers for Disease Control and Prevention gets billions of dollars to run health care and they've been clueless for the last two decades when it comes to answers about autism. Millions have gone into the search for the elusive genetic cause of autism.
Recently, research funded by NIH found that autism is more likely caused by environmental triggers. It was published as big news. The only problem is that no one knows what those triggers might be. The list of possibilities is growing: older moms, older dads, pesticides, having children too close together, living too close to a freeway, antidepressants during pregnancy, a lack of vitamin D or the more than 80,000 untested chemical our children are exposed to. I'm expecting the next two decades will be spent trying to find what in the environment is causing children to become autistic with no definite answers because the last place they'll consider looking is the ever-expanding vaccination schedule.
As media editor at AoA, I monitor what the press says about autism, and while the controversy over vaccines is often a topic, most stories about autism are local news. They're about a walk for autism or about autism services in a community school. More and more however I'm finding stories like these:
Bridgeport CT, June 17, 2011:
What happens when children with autism become adults? Families of adults with autism face that intimidating question every day.
The reality is that few services are available to assist adults with even mild autism, and even fewer opportunities for them to further their education, work and socialize; in short, to live full, productive lives. . . .
New Jersey, July 3, 2011: Construction begins on housing in Warren
Central Jersey.com
Housing for developmentally disabled adults is at a crisis stage, according to Mount Bethel's leaders, with thousands of New Jersey families on waiting lists for group-home placements
Denver Post, June 14, 2011: Disabled adults, likely to outlive parents, face unclear future
Denver Post
The prospect of disabled adults outliving aging parents is a "demographic time bomb," said a state official who asked not to be named.
Allentown PA, July 4, 2011: What Happens To Adult Children With Autism?
Examiner.com
There are 1,717 disabled adults waiting for a place to live and 1,178 waiting for help with transportation and other services, said Liz McDonough, spokeswoman for the state human services department.
The state realizes the problem could worsen as the disabled population ages, McDonough said. But with constant budget cuts, "we have not figured out how we're going to meet those needs," she said.
Reuters, June 28, 2011: Schools teach disabled life skills http://www.reuters.com/article/2011/06/28/us-autism-schools-idUSTRE75R4R220110628
The number of U.S. children with developmental disabilities has been climbing over the past decade, reaching nearly one in six, and the fastest growth rate is among those with autism, according to the Centers for Disease Control and Prevention in Atlanta.
At the same time, a study this month criticized the lack of services for adults with intellectual and developmental disabilities, such as group homes or job opportunities. The vast majority are unemployed and live with aging parents, who rarely plan for new living arrangements as they grow older.
This is a question all parents of children with Autism ask themselves every day. There are minimal services available and the ones that are available cannot support all of these adults. What is a family to do? . . .
In this day of budget "belt tightening", we must consider how the current reduction of funding for services for adults with special needs will negatively impact their outcome in the future. The rate of autism is increasing and funding is decreasing.
As today's children grow into adults, we can expect them to need more support, not less. We need to continue to emphasize these issues not only based on the challenges of today but also even greater challenges for all of those impacted by Autism will face tomorrow.
I think things boil down to the claim that autism is an epidemic affecting kids at never-before-seen rates. When we talk about autism, we're always talking about children with autism. The rate of one in 110 comes from studies of eight year olds, not eighty year olds. It's that simple. If autism has always been around, where are the 40, 60, and 80 years olds with the same signs of classic autism we see in so many of our children? No one has ever been able to show us these adults in significant numbers. (And I'm not referring the one percent rate they claim to have found in Britain using survey questions. I'm talking about adults who couldn't answer a survey and are in need of constant care and supervision.)
I work with a number of autistic teenagers. Their parents fear the future. They don't know what's going to happen when these kids are no longer covered by IDEA. If autism has always been here, there'd be no problem. Autistic young adults would go where adults with autism have always gone. But no one has shown us where that is.
Dr. Thomas Insel, head of the Interagency Autism Coordinating Committee (IACC) created by Congress to deal with autism, has said that 80 percent of Americans with autism are under the age of 18 and he warned that we need "to prepare for a million people who may be in need of significant services." Nothing is being done to provide for the approaching tsunami of dependent adults that will descend on social services in the coming years. The IACC now calls autism "a national health emergency."
A study in 2006 from Harvard researcher Michael Ganz found that lifetime cost for ONE INDIVIDUAL WITH AUTISM is $3.2 million. Others put the cost at between $5 and $10 million PER PERSON. It's frightening to think about what will be there in the near future for the autism generation as they age into adulthood and parents can no longer care for them.
Maybe when that happens we'll get serious about finding the cause of autism. Right now autism is bankrupting our schools. What will this country be like when it's not just a childhood disorder? I keep writing about this. I keep waiting for some official to explain how we're going to handle services for adults.
If we continue to do nothing, in another forty or fifty years, this current generation will be getting old, but the children with autism will keep on coming. The disorder will eventually affect all age groups and we won't remember a world without autism. The question is: How are we going to pay for it?
Best,
Anne
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Anne Dachel is Media Editor of Age of Autism.
Our son is 2 and diagnosed as PDD NOS, SPD. He is non-verbal. With therapy he went from not being able to walk at 19 months, to running now. The speech is very slow, but coming along. He seems very intelligent, very social, laughs and smiles. We don't know now, where he will be when he gets older. Could be serious, could be mild. To me, you are either on the spectrum or you are not. We do feel fortunate! We also feel blessed that we have been given such a wonderful child. We are not sure if our son's was caused by genetics or vaccine injury. I am leaning towards vaccine injury due to the fact that he was progressing normally, meeting milestones until between 9 months and 1 year of age.
We have recently started a non-profit organization and are currently in the process of promoting and asking for donations. It doesn't matter where our son falls on the spectrum, he fits the spectrum and we are a part of the spectrum! Good, bad or indifferent, we all have something in common and should not be ashamed of anything and should all promote autism awareness and do what we can to help others.
Robert Hutchins
Texas Autism
Posted by: Robert Hutchins | July 20, 2011 at 08:32 PM
Maurine, there are a lot of autism parents out there whose children are not profoundly affected. They seem to be absolutely terrified that people will associate them and their children with those who ARE profoundly affected. So they try to distance themselves from families of profoundly autistic children as much as possible. That often includes distancing themselves from even appearing like they are looking into vaccines as a possible cause.
I don't understand why--I'm one whose child was on the mild side of the spectrum, and for all practical purposed, he is recovered. But I certainly feel much closer to those parents who have more severely autistic children, probably because these are the children more likely to have suffered obvious vaccine reactions. Since ALL of my children suffered obvious and severe vaccine reactions (as did I), that's probably why. I know what I know, and whether or not my child is mild or recovered, that doesn't change what I know.
I can't begin to understand those who stare the science in the face--including the link between autism and cancer, which basically shows a link between VACCINES and cancer--and pretend it's not there, and then shut down. And that is ridiculous. We KNOW that vaccines can induce food intolerances and/or celiac disease. We KNOW that untreated celiac disease can lead to cancer. We KNOW that autistic children have a high likelihood of having gluten intolerance and/or celiac disease.
Yet we see autism parents (not here) insisting that, because their child's biopsy was negative, then their child must not have celiac/gluten intolerance, and they completely bury their heads in the sand and ignore the fact that most people with gluten intolerance and even many people with celiac have negative biopsies!
I don't understand why they do this. Is it that painful to realize that current medical science can fail at diagnostic tests?
The scientists I know are ALL aware that there IS science showing a link between vaccines and autism. Not causative proof, but as much of a link as exists between smoking and cancer. They are also aware that the science purporting to dismiss a link is tainted at best, and usually deeply flawed. They won't say anything because it is career suicide to do so. In fact, looking at the Murdoch/murder news, it looks like it is signing a death warrant to do so.
Yet at the same time, none of the doctors I know are aware of the same science. They quote the Danish study and clutch it like it's a life raft.
I doubt that any of the mothers who wax poetic about how they accept their child as is, how they don't need to know what caused damage (actually, usually they won't admit that there IS damage--they react as though the autism they experience is akin to having curly hair, or blue eyes), and their lives are full of sweetness, light and joy--I doubt any of those mothers are living with a severely autistic kid.
And that's kind of tragic, in a perverse way--it shouldn't take living with a severely autistic kid, or personally witnessing a vaccine-induced seizure reaction to "get it." That's like not "getting it" about the Holocaust unless you actually personally witness what went on places like Auschwitz.
Posted by: Taximom | July 20, 2011 at 07:13 PM
Thank you, Anne, as always!
Posted by: Jeannette Bishop | July 20, 2011 at 03:09 PM
While there aren't nearly enough programs for adults with autism today, some of us parents ARE trying to create programs for today's adults with autism - yes, there are some - and for today's children with autism who will soon reach adulthood. I'm involved with nonPareil Institute (www.npitx.org). We have over 50 adults with autism in our program today and more on the waiting list. It takes time, money and dedicated people to build the programs our children will need for their lifetimes.
Posted by: Vicki Hill | July 20, 2011 at 08:46 AM
As the mother of a 6 year old with severe autism, I have already accepted the fact that when he is aged out of school, we are totally on our own. As much as I will be continually lobbying for services, both for children and adults, I know it is completely unrealistic to think that the government will be able to help ALL of the individuals with autism as they age. Really, it's just not possible in the numbers (of people with autism) we currently have and the numbers to come. Not possible. And it's a rare parent that is actively saving this 3.5 million dollars for their autistic child's adult life. So what will happen when they are adults?
Continuing on a path where we don't address the cause and try to prevent more children from developing autism is naive at best. It's like trying to bail a sinking ship using only a thimble. I agree with Maurine that Lisa Jo, while seemingly kind, is living with an extremely outdated model of autism.
Posted by: Kristine | July 20, 2011 at 01:11 AM
If a child was injured as the result of faulty brakes on a car, we would no sooner cease to support that child because the car was at fault. We would instead, find the cause and hold someone accountable.
Posted by: Cynthia Cournoyer | July 19, 2011 at 07:38 PM
As you can see by my posts on this some days ago and then Lisa's posts, she has not a clue as to what autism really is.
Sometimes I have to blindfold my eyes to her responses because they are so 1980. Lisa Jo is friendly and polite compared to some of those other "Mnookin type bloggers" but she is as behind the times on the true nature of autism as someone who uses a manual typewriter.
Maurine
Posted by: Maurine Meleck | July 19, 2011 at 05:48 PM
Anne, thank you for refusing to "accept" autism. My son is 48, and autism was rare when he was a child. He suffered trauma and oxygen insufficiency at birth. I enrolled in graduate studies over 40 years ago to try to find out everything known about how brain injury at birth might be linked to developmental language disorder. I have tried often to highlight some seminal papers that have become forgotten over the decades, and that provide evidence that the auditory system is especially vulnerable to toxic substances in the circulation, as well as hypoxia at birth.
Autism does not get easier to live with over time. It gets much worse. Following is what I recently wrote in a critique of my son's group home:
My son was better off by far during his ten years at Westborough State Hospital than during his 8 years at Bridge Street. He had a job at Westborough State Hospital, for which he was paid, and seeing the birdfeeders he assembled for sale in stores was a matter for celebration, and gave him a true sense of being a participant in the community. The house he lived in did not have alarms on the doors. He could sign-out and sign-in again to go to work, a rehab program, or just to take a walk along the shores of Chauncy Lake.
The staff at Bridge Street try hard, but they are young and do not have professional training or experience. They move on as soon as possible to better-paying jobs or to go back to school.
For the past 3 Sundays only one staff has been there. One cigarette per hour on the hour on the back porch is no way to spend a beautiful summer day.
I am told my son has no motivation, and is not ready for community activities like supported work or GED prep classes. My son needs encouragement to develop motivation. He is writing a memoir with me, and his writing is getting better and better all the time.
My son has gone downhill since his discharge from Westborough State Hospital. He has gained weight and become diabetic. He is viewed by staff as just another shabby mentally ill old man. My grief is great.
Posted by: Eileen Nicole Simon | July 19, 2011 at 04:08 PM
What I don't understand is how Lisa Jo Rudy can think that autism has always been around. REally? Even if the children were then called "retarded," we didn't all know somebody, or if we did, it was somebody really unable to function and usually had a lot of physical deformities too. Even the government admits that the increase is real. So I just don't understand this attitude. I really don't.
Posted by: Julie Leonardo | July 19, 2011 at 10:42 AM
Insell's brother is involved with HIB. But, really, what's the difference, they're all worthless.
Posted by: Mary | July 19, 2011 at 10:26 AM
Messed up like I always do;
I mean Hep B vaccine is probably the cause of the increase in the rise of autism in the 90's.
Posted by: Benedetta | July 19, 2011 at 09:03 AM
Media Scholar:
I don't know how I feel about that?
On one hand to have an interagency within NIH for autism, at least autism is getting some attention.
On the other hand choosing Tom Insel to head it, I mean the brother of the co-inventor of the Hep B - which let's face it- is probably the increase in the 90's. Even though it was the DPT that put mine under, it took the Hep B to get that big increase.
But then again maybe Tom Insel should not be judged by what his brother does. I have known many brothers that don't even speak to each other.
But then Tom Insel says: The jobs that these kids with autism can get is less communication required jobs (no such animal) but they will be good as engineers. Reason tells any human being that these kids have more problems than just commincation problems. This man should have known this and this man is the leader of this interagency.
Just last year Tom Insel says out of the blue, with no references to vaccines -- I am not sure what the point he was even making but he said that by preventing all those past diseases the main benifit was it stopped commplications like mental retardation. This is the leader of an interagency that is dealing with kids that are having thinking and reasoning problems, along with a lot of other physcial problems. This is also the man that said autism was on the rise (well he is not entirely --- he is like a chain - events are pushing him forward and he is resisting so events, the truth is pushing that chain one link at a time.
So with one link at a time - is IACC worth it?
Posted by: Benedetta | July 19, 2011 at 09:00 AM
Dear Anne:
You say it so succinctly. “The rate of one in 110 comes from studies of eight year olds, not eighty year olds. It's that simple.”
Yes, this is a scientific no-brainer. Autism in the United States is an epidemic.
And yet regarding the most significant potential environmental culprit in the United States, it is beyond all logic that both the CDC and FDA continue to allow mercury used in flu shot preservatives for 6 month olds and pregnant women. These shots have mercury parts per million levels that are over 200 times the D009 hazardous waste threshold.
The concept of taking no action to help prevent future heavy metal brain injuries for our children of this country is mind boggling. We cannot allow the Pharma corporate grip on our federal agencies to continue.
Posted by: Jim Thompson | July 19, 2011 at 07:52 AM
If the devils are for it, how can you NOT be against it?
http://leftbrainrightbrain.co.uk/2011/07/upcoming-iacc-full-committee-meeting-july-19-2011/
The Combating Autism Act (CAA) is set to “sunset” at the end of September of this year. With that would be the sunset of the Interagency Autism Coordinating Committee (IACC).
http://leftbrainrightbrain.co.uk/2011/07/upcoming-iacc-full-committee-meeting-july-19-2011/
The Interagency Autism Coordinating Committee will meet again on July 19. Should the Combating Autism Reauthorization Act (CARA) not pass (or another bill to continue the IACC), this will likely be the final IACC meeting.
Posted by: Media Scholar | July 19, 2011 at 07:15 AM