By Anne Dachel
Every couple of years when the Centers for Disease Control and Prevention gets around to updating the autism numbers, which are always increasing and never at a plateau, I’m left wondering one thing: WHAT IF THINGS GET EVEN WORSE?
HOW BAD DO THINGS HAVE TO GET?
When will autism become a crisis in America?
(It should be noted, since I follow this news religiously, that no U.S. health official has ever called autism a crisis. The “C” word is never to be used in the same sentence with the word autism. I’m sure that’s directive sent out to all staffers when talking about autism.)
No reporter has ever inquired about worsening numbers, and officials are never worried.
Ten years ago we learned that one in 38 children in South Korea had autism. We’ve seen one in 27 in Hong Kong, one in 22 school children in Northern Ireland, and most recently, one in every 14 kids in Toms River , NJ, including one in every eight boys.
It’s clear that the people in charge of public health will never really care about autism, even as it buries us.
Question 5: How will we manage to provide for more and more children with developmental disorders in our schools at the same time huge numbers of autistic young people are aging out of school and looking for adult services?
Mark: One thing about our models, Anne, was that they were all arithmetic. They were programmed. … We had to make assumptions about birth cohorts in children who have not yet come into the world. So we had to assume what the rate of autism was going forward.
So we did arrange some scenarios, because we don’t know that.
And then we applied cost per individual by age. There are numbers on that. You can find that. There’s a literature.
But when you add all that up together and you project it forward, what is left out of that is the budget.
Where does the money come from?
Will there be constraints? What will happen? Will we hit some brick wall that we can’t afford?
We’ll have ghettos of autistic adults because all of a sudden state legislators won’t provide funding, or it’ll break the bank.
There’s a whole dynamic: the provision of dollars and the demand for dollars. We basically modeled the demand for dollars, but the provision of dollars will not be infinite. It can’t rise forever. There will be pushback, and the system might just break.
You talk to Toby Rogers. Toby and I and Cindy talk about that.
It’s a model, but it’s not the flesh and blood of the real world and the interplay of markets and institutions and resources.
Resources are not endlessly available for populations that don’t earn.
We’re going to have those problems. We’re going to have the adult problem and the childhood.
We don’t even know what the peak of the childhood problem will be. We haven’t seen the peak.
We went through some very abstract mathematical thinking to produce some curves, but the differences between the curves are extraordinary.
We keep projecting the rate of severe autism up to three percent, and then to get the total autism spectrum, you got to multiply that by two.
You’re getting five to 10 percent of the childhood population has an autism diagnosis.
That’s enormous. We can’t function. The school systems won’t function.
We’re now at three percent. We’re talking a tripling under some scenarios. I hope we don’t get there.
The schools will break if we keep seeing the increases that we’re looking at.
We took some more moderate scenarios. We said maybe those California numbers are going up faster more recently, what if some of that is the change to the DSM5? We’ll put the peak lower.
Even then, that’s our low scenario in the paper, even then you’re talking about trillions of dollars because the number’s already so high.
You take three or four percent of the population and you apply that across the whole population, including adults, that’s 10 million people or more.
We don’t know what will happen. We know we’ll have both problems. We might have a worse problem by a couple of multiples in the school system. We start running into real resource constraints really soon.
And then when the safety nets go away, when the parents die, we’re in for a world of hurt. I don’t know how we’ll manage to provide for all these people.
I’m really, really worried about it.
I want to be shouting to the heavens: this paper is a very scientific, evidence based modeling of very real numbers that have been accepted broadly all over the world.
If you do the simple arithmetic, the system runs into some real problems. Trillions and trillions of dollars and it might not function.
What is autism going to cost?
One of the convenient results of the lie that autism is nothing new in the human population is that it seems we’ve somehow been able to handle things. If autistic people have always been around, we’ve provided for them, even if we didn’t call their disability autism.
That’s a delusion, yet it’s still going strong, no matter how bad the numbers get.
The one thing no official has ever called for is a study on the autism rate among adults. Telling us something but never having to show proof is pretty much the history of the federal government when it comes to autism.
My often repeated question has never been talked about: Why can’t young autistic adults go where autistic adults have always gone? We must have done something with them, even if we didn’t call them autistic.
The fact that we’re desperately short of services for these disabled young adults is more proof of lie we’ve been told.
Meanwhile there are endless stories from across the country over the last two decades about training people to deal with autistic children: fire fighters, ER personnel, police, teachers, airport staff, librarians, doctors and lots of other groups.
We’ve made other adjustments like sensitive Santas in stores at Christmas, autism-friendly movie showings, sensory/calming rooms in schools, to name only a few.
And as this population of autistic children ages out of school and into the adult population, many more adjustments will have to be made, and we’ll all be paying for them. Autism awareness will be everywhere.
Incredibly all this seems to be happening with no questions being asked. Somehow it’s insensitive to talk about where all these kids are coming from.
Question 4: Where will we see the biggest drain on resources and funding: federal, state, or local levels?
Mark: The question of who pays is going to be a big one, and what we know is that we will see a massive shift in who pays.
Right now most of the autistic population is children, and so what that means is parents pay. Either they pay directly out of their pocket or they lose the ability to work. So there is lost parental productivity.
We’ve all felt that. Autism and fighting for your autistic child is not a good career move.
There’s lost productivity. It’s more often women than men, but there are subtle effects. People’s lives change, and they have fewer children.
There are just so many effects of autism on the parents. There’s a large burden that is borne by the parents.
And to the extent that there are additional burdens is going to be the special education program in the local school system. They’re largely paid for out of local taxes, to some extent state funds.
There will be early intervention programs which can be very expensive, which are often funded by Medicaid or private insurance sometime.
So there’s a mix of funding, but the large majority is local, either the parents or the school system. There’s no single constituency standing up and shouting, we’ve got to do something.
One thing that has happened is that the schools have by and large soaked it up. It’s been a huge burden. It’s been a drain on school budgets, but whether it’s through rationing of service or taking funds from other programs or raising taxes or whatever it is, school systems have largely absorbed the autism childhood population.
It’s become politically incorrect to complain about that. So that has happened.
As children age out, parents are going to have to find—and I just know my own experience. My daughter has now entered the state services funding program.
…They’ve just set up an autistic division to deal with their new constituency of autistic adults.
My daughter now has a day program that is funded by the state. It’s not funded by the school system. She’s in a residential program because her aggression became tough for her mother to handle, and that is also paid for by the state.
Her mother’s involvement, my involvement, we’re active, we’re taking care of the services, and the state still has money. They haven’t seen the tsunami yet. They’re seeing a meaningful increase in 20 somethings.
We can look at that. It’s in the paper, Anne. I don’t know if you’ve read every word, but the Social Security Administration audits the number of adults that receive funding by diagnostic category. They added a number for people with autistic disorder in 2010, and that number has exploded in just seven or eight years. Fifteen percent a year increase. Of course that’s mostly going to be young adults.
We will see some federal funding, social security and social security disability payments.
The states are going to start asking for money. We’re going to see this shift from a highly distributed and responsive network of payers, parents and schools, and it’s going to go to state and federal governments without parents as advocates.
When my daughter is fifty, I won’t be here. She’s 25 now, so whenever I leave and her mother leaves, all of a sudden there’s a binary shift and she’s a ward of the state.
The state is not generally a great caretaker. They’ll try, but things fall through the cracks. People aren’t observed well. There’s turnover in the service providers. People don’t remember what happened 10 years ago. They start making mistakes. They compound. There’s negligence. There’s boredom.
This is a difficult population to handle. Most of them are men, and most of them can get violent on occasion. They’ll be restrained, and they may even be mistreated and abused.
So it’s a very, very bleak future that we’re looking at with big government taking care of troubled autistic adults without the parents to support them, and I worry about that shift.
By Anne Dachel
For years I’ve written about something I call “the really big lie about autism.” That is the continual and baseless claim that all the autism everywhere among our children is merely the result of “better diagnosing/greater awareness/expanded definition” of a disorder that’s always been around.
Each and every time an official increase in the autism has been announced, there was always some federal official assuring the public that they weren’t sure IF THIS INCREASE represented a true increase in the number of children with autism.
Their real meaning was FROM THE LAST OFFICIAL INCREASE, but they knew that the media lackeys would spin the message to read, THERE HAS NEVER BEEN A REAL INCREASE IN AUTISM.
As long as that lie works, they can all relax. Autism only requires recognition and services. Allocate more funds and life goes on.
Back in 2006 I was in Washington with two doctors visiting congressional offices. We had an appointment with the chief of staff of my representative, Dave Obey of Wisconsin. During our meeting we laid out the evidence on the increases in autism and the cost predictions.
Obey’s chief of state’s response was this: “So what’s the solution? Congressmen don’t like problems without solutions.”
The three of responded together, “We have to stop it.”
That pretty much ended our conversation. She wasn’t interested in what that would involve.
Question 3: Why aren’t health officials focused on this? Why do they continue to tell us with each new rate increase that they are still not sure if more children actually have autism?
Mark: That’s a really interesting question. I think there are multiple answers.
At one level, most of the people in these jobs have relatively short career time horizons, so they’re looking for their next job. They’re in for not very long.
If they can defer dealing with tough questions for two, five, 10 years, they don’t have to worry about it anymore.
Autism parents have a much longer time horizon. Our time horizon is longer than our own lives. Our time horizon goes decades long
We’re worried about the lives of our children when we’re gone, so we are the ones carrying the message.
At some level it’s just short term, long term thinking. .
It’s a tough question to answer.
Another reason they don’t answer is they don’t have a good answer that they like. If these increases are real, it’s an enormous problem. It’s an enormous cost to society, it’s an enormous drain on families and services.
If you’re a public health official or bureaucrat, you like to get on top of problems that create opportunities, that serve your interests, that allow you to mount a program and to be a hero and say, look at all we’re doing.
If they knew what was going on in a way that led them to a solution that they liked, they’d have it for us.
And because of the size of the problem, the only possible response for an official like that is to say, “Well, I’m not sure. I don’t know.”
Plead ignorance because as soon as you acknowledge that it’s real and it’s serious, that it’s monumental even in terms of the social costs, you’re obligated to address it. And they don’t have an answer that they like.
The obvious answers must be environmental causes, and there’ s no one in the scientific community that wants to take on the plausible culprits because they involve corporations, they involve the medical institution, the failures of medical policies and practices.
I try to avoid, Anne, the vaccine question because that becomes a red flag.
I have my own beliefs, but for this purpose, scientifically, I put those beliefs aside.
I think the most important thing is that we focus on the cost and the problem. This problem could have many causes, multiple causes.
All we have to do is to acknowledge that these are environmental causes and we must address them.
We must, almost urgently, immediately figure out what’s going on so we can pause it, so we can reverse it, so we can change the trend.
The act of saying we think this is a crisis and the numbers are real, and the costs are real requires you, obligates you, mandates that a leading public health official takes on that policy question.
You know, they’re all cowards or worse, and they have not chosen to stand.
A few years ago, the parent of a daughter with severe autism talked with me about the last IEP meeting he attended during her final year in high school.
The father asked the staff about what was next for his child. What adult programs would there be for her?
Her teachers had to admit that they didn’t know of any specific programs in the area at the same time they assured him that they were sure there would be something.
It was no big surprise for him to learn that no one is prepare for young adults with autism. His daughter was moved from one program for developmentally disabled adults to another, with none of them equipped to deal with her behavioral needs. Today social services pays a relative to babysit her all day.
This is but one tiny example of the future that Mark Blaxill talks about here.
Question 2: How bad will things get if the autism rate increases continue at the rate they have in the past?
Mark: It’ll get really bad. We know that. I like to say that before 1930, the rate of autism in the world was effectively zero.
Then Leo Kanner discovered it in a handful of children who were born in the 1930s. He wrote his paper in 1943 after seeing a bunch of children who were unlike any other group he’d ever seen before.
He was the world’s leading expert in child psychiatry. For many years thereafter, in the U.S. at least, the rates were really low, one in 10,000.
Then they began to tick up a little bit in the 70s and 80s, but in the late 90s they went vertical. We haven’t seen the plateau in that curve.
The latest numbers we have are something like three percent in American children. There are numbers that are even higher than that in some places.
What that means is, if you were born in 1930, you’d be 90 today. … So there are people who are alive today who were around when there was no autism. The first cases of autism, some of them are still alive. I have met a couple of them, but they are vanishingly rare.
So we have no system for elderly adults with autism whose parents are no longer with us.
We have been struggling all over the world in special education programs to deal with the onslaught of children.
What we have not dealt with is the tsunami of autistic adults who are now starting to age out of the school system, who will flood into an unprepared services infrastructure.
There is no infrastructure for autistic adults without parents. They’ll require residential services; they’ll require day programming services. We will lose their productivity in the population. In some cases, a few of the higher functioning adults will do productive work, so I don’t want to minimize that, but in large measure, these will be unemployed human beings who will be a weight on the economy.
Those costs have not yet ever been seen, they’ve not ever been paid for, and we are nowhere close to equipped to deal with it.
We are just now dealing with autistic young people in their 20s. My daughter is 25 years old. She was born in 1995 just as the rates were being to increase, and there are no services for her. There are no programs for young autistic adults.
I’m involved in an autism center. We have just started. I’m the chief financial officer. We’ve just initiated a program for autistic adults, because there are none.
There are programs for intellectually disabled people, but not [for] the unique problems of people with autism. We’re not prepared.
Even then, most of the young people, if they’re young adults, their parents are in their 60s, 70s. They’re still going. They’re still taking care of their children.
One of my working titles for this paper was Autism Will Cost a Trillion Dollars When I Die. We’re looking at numbers in the hundreds of billions. They’re not small.
We’re going to see this tsunami hit. Most of the cost will be in young adults, and there will be no safety net because the parents are by and large, the safety net.
We’ll be gone. There may be siblings, there may be relatives, but this is going to be a bleak scenario when we have literally millions of adults who are not for whom we’re not currently prepared to provide services. They will be increasing in large numbers.
Mark Blaxill Autism Tsunami Part 1
Question 1: Tell us about your study, Autism Tsunami: the Impact of Rising Prevalence on the Societal Cost of Autism in the United States. What motivated you and the other authors to look into the future impact of autism?
Mark: My motivation has been 20 years long. (Inaudible)…and it was pretty obvious for too long, the numbers were exploding.
California and everywhere you looked, the numbers were going up, and that invalidated the orthodox story line.
(Inaudible) Mark dismissed the official claims of better diagnosing/diagnostic substitution.
And we’ve known that for a long time, Anne.
I first started writing about that in 2001, 2003, in that area. I started writing in the Journal of Autism and Developmental Disorders when they started trying to blame it on diagnostic substitution.
It was obvious that the work that they were doing …(inaudible)
I wrote to them. I got some colleagues to write. …
The authors that argued that it was diagnostic substitution had to retract their findings because it was obvious that they were arithmetically wrong.
The rate of autism was going up, and the rate of intellectual disability was not declining.
Then I wrote a paper that was published in 2004, What’s going on? The question of time trends in autism.
I argued that the rates were going up and it was real, all over the world, particularly in the United States and the UK.
I know you focus very heavily on the United States and the UK both of which have rates that are going up.
And then I kept writing about it.
I wrote a book called The Age of Autism.
I wrote another book called Denial, both with Dan Olmsted.
One in 2010 and another in 2017.
You’re kind of screaming at the universe, please pay attention. This is a crisis.
Anne, you do this every day. I do this in longer cycle projects. We’re doing much of the same work.
One thing that happened is that Cindy Nevison, whom I’ve gotten to know pretty well, and she’s doing very good work. …on the environmental causes of autism.
She and I got together with a guy named Walter Zahorodny, who is the CDC’s man in New Jersey. And New Jersey has been reporting some of the highest rates of autism.
Walter, in his own way, is saying the same thing.
So we started writing a paper that was published in 2018. The three of us were co-authors.
I had been looking at the California numbers way back since 2001, some of the early days. Cindy had started looking at more recent numbers. We compiled our databases.
We got this article published that said, you know these rates are exploding and they’re real.
By the time we’re doing that in 2018, that’s 20 years after I first started looking. The numbers are scarily higher, and to your point, the increases have not slowed, if anything they look like they’re growing more rapidly. …
Cynthia and I wrote another paper called Diagnostic Substitution, again showing that there’s no case that the increases are due to substitutes of intellectual disability.
When they published the California paper in 2018, which surprised me honestly, I was surprised because it goes against the orthodox narrative.
Good for the journal. They’ve been a pleasure to deal with because they’re interested in good evidence and good science, and we’ve tried to write it very rigorously.
As soon as that paper in 2018, I wrote the idea to Cindy and some others—hey, let’s do a cost of disease paper, because there is a literature on the cost of disease.
Most and almost all of it, until very recently, almost all it has assumed that the rates of autism prevalence are constant, which is a spectacular error.
First of all, they tend the latest numbers so they underestimate the cost of autism in children, and then they assume that whatever rates we’re observing in children, we’re observing in the elderly. So they will assign all those costs, and they’ll put a model together that’ll say, this is the cost of autism in elderly.
And they’ll add all that up, and they’ll come up with a number that’s too high for the total cost, but that underestimates the cost in children and dramatically overstates—makes up fansome numbers for cost in the elderly that don’t exist.
So that’s an error, foundational error in most cost of disease study, and we sought to correct that. That was the idea.
Part 2 follows tomorrow.