PRESENTATION: Jill Escher, President of the Nat'l. Council on Severe Autism

 Jill Escher is the president of the National Council on Severe Autism, and a board member of Autism Society San Francisco Bay Area.

Escher recently interviewed Dr. Walter Zahorodny from Rutgers University in New Jersey, a leading expert on the rate of autism in America.

SEE text of the interview with Dr. Zahodny: https://www.lossofbraintrust.com/post/interview-walter-zahorodny-phd-on-the-unrecognized-autism-epidemic

The first half of the interview was Escher’s views on the rise of autism worldwide.

National Council on Severe Autism Webinar, February 15, 2024, featured Jill Escher interviewing Walter Zahorodny, PhD, Rutgers University, a leading expert on the increase in autism in America.

Autism's Rising Rates: A Deep Dive into Autism's Increasing Prevalence and 50 Years of Data https://www.youtube.com/watch?v=9Ff5TGvmTnw

The first half of the interview was Escher’s views on the autism as an epidemic.

The growth in the number of cases of autism within a given year in California.  18:30

California had basically like no autism cases, about 3,000 autism cases in the 80s. Today we are reaching almost 180,000 autism cases in our Developmental Services System.

The increase in California is “enormous” and “shocking” and “never been explained.”

Every single time people in the state or researchers have gone back into the data to try to explain this, they have not been able to do that. .  . .

NOTHING is really helping to prevent autism, reduce autism in our population. In fact, it’s quite the opposite. We’ve seen a tremendous surge even in a system that is solely devoted to those with significant disability . . . .

In the 80s, even in the early 90s, they saw very few autism cases. There were very few autism classrooms. People didn’t know what autism was in 1990, and today we have. . . 

countless autism programs. Schools, you know, everybody’s bursting at the seams. Our adult programs cannot handle the influx of new autism cases.

It is not diagnostic substitution, according to Escher.

California has the best autism data in the nation. . .  California has a whole department that has been looking at this stuff for a long time. 

Autism only made up 4.8 percent of our Department of Developmental Services System in1993. Well fast-forward 31 years, and it’s half the case load.

Anyone you talk to in our system which is called the Regional Center System because those are the agencies that actually fund and provide programs for our developmentally disabled citizens, will tell you that they’ve seen this exact trend.  . . . 

They’ve been seeing a manifest, obvious objective difference in the characteristics of the people who are now in the system compared to the people who were in the system. . .  in the 90s. . . .

 The programs that were set up in California to serve these people, most of them are completely unprepared to serve at least those who are more severely disabled by autism. . . .

We see this dramatic increase in our Medicaid population. The autism population there more than tripled. . . . Again we see these dramatic increases but mostly in these younger age groups.

 . . .

There was a more than three-fold increase in adults receiving SSI benefits over 10 years.  . . .

Speaking on the Northern Ireland  . . . from a very recent report from last year. They found 7.3 percent of their school age males had autism, overall, 5 percent.  That’s a crazy number. . . .

I don’t know why a number like this doesn’t raise the alarm bells.

This is absolutely potentially catastrophic for Northern Ireland.  . . .

WHAT IS IT?

46:29

We’re seeing these dramatic increases in autism.  What’s causing it?

If it’s not awareness, and it’s not diagnostic shifts, not ascertainment methods, what’s causing it?  If there is something real causing this, we should probably know what it is.

Any hypothesis has to meet these criteria. It has to be consistent with the increases we just talked about, starting with the early 1990s births.

It has to explain the continued increasing prevalence from that point.

It has to explain the strong heritability of autism, especially the sharply increased sibling risk. . . . 

It has to be able to explain what autism really is at heart. Biologically, autism is a disregulation in early brain development . . . .

It has to explain this weird male to female ratio, about four to one cases.

And it has to explain this weird regional variability, especially higher rates in wealthier countries.

So far nothing has come close to explaining this. 

Genetic fails in all of these respects except for this fourth section, the disregulation of early brain development. . . .

Of course it’s not vaccines. Vaccines really can’t explain any of this.

So this is the greatest medical mystery of our time, and the people who are supposed to be solving this are acting like there is no problem to solve, which should deeply worry us.

We should be very worried about the future of our children and of this country if we don’t figure this out.

Here’s an emerging hypothesis, and one I’m very actively participating in. That the rise in ASD is in part attributable to unforeseen impacts of heritable impacts of  certain toxic exposures to our germ cells, which is our sperm and egg. . . .

What were they exposed to as fetuses? What were they exposed to in early life?

Our argument is we shouldn’t be looking at our kids. It’s nothing that our kids were exposed to; it’s what we parents were exposed to.

That’s the shift that we need to see in epidemiology because that’s what can help explain these weird patterns in autism research. So it would be a change in our germ cells, our egg or our sperm that would change what’s called the transcriptional landscape. It would change how our genes are expressed in our children in early development. . . .

Animal studies have shown that general anesthesia “can change the way our genes act in our sperm and egg.”

If we expose the parents, their children are at higher risk for having disregulation in their brain development, autism traits in their behavior, and that is especially seen in the male offspring. . . .

Research is desperately needed. All we have is the beginnings of this hypothesis. It is not remotely proven. . . .

The evidence for a true increase in autism is overwhelming. We face a national and indeed an international emergency with which we absolutely cannot cope.

This pretends an unimaginably bleak future for countless individuals and families. It’s urgent to expand treatments and systems of care serving a huge variety of needs. . . .

I think system reform hinges on accepting the reality of this autism surge because right now we are playing pretend and completely asleep at the wheel. . .

Denialism must stop. We need answers now.

It is really irresponsible to treat autism, which is a serious neurodevelopmental abnormality in the majority of cases, to dismiss it as a form of neurodiversity. 

The most promising hypothesis so far as relates to parental germline exposure, but this line of inquiry is almost entirely ignored in favor of genomics, when we can be absolutely sure, based on decades of research, that genetics only explains a small fraction of the overall autism cases.

She criticized the media narrative that autism is genetic.

MORE INFO ON JILL ESCHER

https://www.ncsautism.org/blog//jill-escher-at-tedx

. . .Autism is hard-wired from birth, even before birth. It’s a very intractable condition because it’s baked into the child’s brain, it’s innate. And it’s definitely not caused by vaccines, let’s please forever bury that hypothesis. . . .

Autism rates have truly skyrocketed. There’s an old saying, If  you tell a lie big enough and keep repeating it, people will eventually come to believe it.

I believe one of the most dangerous lies of our time is the oft-repeated notion — you have probably heard this numerous times — that autism is a mere “epidemic of awareness,” that the numbers aren’t really growing, that we’re just noticing it better, we’re using different labels, expanding the diagnosis.

Nothing could be further from the truth. There is overwhelming evidence that rates of abnormal neurodevelopment we call autism are truly surging.

Alarmingly— we still don’t know what’s causing it. Now, I hate to say this because I’m a huge supporter of autism research, but in this dimension, autism research has beena colossal failure. Despite billions poured into research, using the most robust and advanced technologies and methods, we know very little about the root causes. Only about 14% of cases can be attributed to genetic mutations —maybe depending on the study 8%, 10%, or even 20% if you count just more severe cases — but 14% is a fair estimate. And these very rare mutations for the most part are not handed down ancestrally, they are mostly de novo, or newly occurring in the child, or more likely the gametes that made that child.

And perhaps something around 10% may have roots in perinatal factors such as prematurity, or rare adverse exposures in the womb, such as drugs like some anticonvulsants or high maternal fever. But for maybe 75-80% of cases, despite billions spent on research — we still don’t know. My kids are in there in the grey swath — most of the kids I know are in there.