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.