By Anne Dachel
I recently wrote about the Aug 17, 2016 coverage from NPR Boston which focused on special needs students in Massachusetts.
It was really hard to ignore the data, yet officials and educators in that state don't seem worried.
Additional reporting from NPR Boston included this interview of a special education expert from Lesley University about the soaring increase in autism.
WBUR's Morning Edition host Bob Oakes recently spoke with Elizabeth Keefe, an assistant professor at Lesley University who focuses on special education and autism spectrum disorders. We asked her if the number of special education students in the state is growing.
"The number of students that require special education services in the commonwealth has remained largely static over the last 10 years. There's no question that there have been specific groups, such as students with autism, who have experienced a significant number of students with particular disabilities in our schools. So I would say, the need for programming for students with very complex disabilities is certainly an issue in the commonwealth."
It seems that this expert sees things both ways. Yes, there are "a significant number of students with particular disabilities," like autism with a 300 percent increase, but at the same time, the numbers have "remained largely static." Unfortunately, the host didn't expand on this and ask Keefe specifically about the data on autism. Missing were questions on the reason behind the autism explosion that shows no signs of levelling off, or what the future holds for Massachusetts schools if things get even worse.
I asked our Editor At Large Mark Blaxill, a leading advocate in the autism community and himself a resident in Cambridge, about the lack of concern on the part of educators in Massachusetts. Here was his response.
Mark: “There are a number of things that are unique about Massachusetts, and I’m living it with my daughter right now. One of the things that I think that might contribute to complacency among some of the bureaucrats is that for a long time, Massachusetts was what they call a ‘non-categorical state’ and that the IEP’s were not categorized. They deliberately didn’t put people into categories like autism. Then there was a bill passed maybe over ten years ago that forced the state’s special education services to enter in categorical data, and that’s when the autism numbers were first visible in Massachusetts.
"In fact, they got re-categorized. While I don’t think the diagnosis was ever not given, there was this perception of diagnostic substitution. So as the autism numbers have risen—one of the times they rose the sharpest, was when they were first entered because they weren’t entered [at all previously]. So some of these folks can probably talk themselves into believing that there is diagnostic substitution, when that’s not in fact true. In fact, if you look at the numbers since that shift, the mental retardation rates have drifted down a little, but autism rates have exploded, at least that NPR data shows.
"So that’s a background fact for Massachusetts that matters. The one thing that I’ve learned, kind of close up and personal, is, [if] you talk to special education teachers, they all know, they take it as a given that the autism rates are going up. They don’t know why. They don’t consider it their responsibility to ask why, but they just take that as a given in their environment.
"The other thing that I guess is most dramatic, that I’ve learned—I guess the third thing, is that we’re now seeing the aging out. And Massachusetts ages out a little later…They’re generous in terms of when they age people out of the education system, so my daughter will age out on her twenty-second birthday. That’s when her educational services will stop, and she’ll enter the adult services population. And the thing that I’ve learned is that really just two years ago—my daughter was born in 1995, and she’s about a year and a half away from aging out—the children born as of 2014, so two years ago, the adult services group reorganized themselves and they set up an autism adult services group, which runs differently from the mental retardation or intellectual disability group. They recognize that those populations are different in terms of what they need from the adult services system. So clearly, Massachusetts, in its services infrastructure, it has recognized that they are now seeing a new population. My perception of it right now, is that they’re doing a pretty good job, and they’re pretty well organized to deal with my daughter’s concerns. I’m hopeful that it will go well, and we’ve been working with some very conscientious people that are doing a good job.
"Obviously, if the epidemic, the tsunami of adults, continues unchecked for five years, ten years, twenty years, forty years—imagine the population of adults that is going to be facing this emergent services program. It’s going to be under huge stress.
"For whatever reason, I think the school system has absorbed the challenge, but—and it’s absorbed it at the expense of other things, other services. There’s probably been rationing of services to some degree, but I think the adult services is likely to be where we hit a tipping point. At some point there’s a straw that will break the camel’s back. When that happens? I wish I could predict."
I absolutely agree with Mark on the idea of a "tipping point" being reached when hundreds of thousands of young adults with autism age out of our schools and overwhelm adult services in the coming decade in America. Worse still will be the eventual cost to the taxpayers when parents are no longer able to care for these individuals. The adult burden will be added to the already present cost of all these special needs students who keep coming and coming.
For years at Age of Autism we've reported on autistic children who were abused by an educational system that was never designed to deal with them. Stories about seclusion rooms, restraint devices, and negligent teachers, bus drivers, and aides are overwhelming evidence that autism has not always been here. Lots of coverage has focused on autism training for educators, police, doctors, nurses, librarians, EMTs, firefighters, and airport personnel. Add to that the stories about making all kinds of places "autism-friendly": story time at the public library, movies, "sensitive Santas" at Christmas, restaurants, plays, summer camps. We're living in a world forced to accommodate an ever-increasing disabled population that we refuse to see as a real concern. Yes, somehow we've managed to hold things together as autism has disabled a generation of children, but the clock is ticking. Imagine what it's going to be like when two percent of adults are also autistic. Our society will have to make dramatic changes. And maybe when the COST OF AUTISM becomes too much, we'll finally honestly address the CAUSE OF AUTISM.
I recently read a piece in NewsMax called, "Natural Remedies for High Blood Sugar," by Trent Nichols. (Sorry, but the story isn't available online.)
What caught my eye was the expert cited in the story, Dr. David Brownstein, someone who is an outspoken and courageous critic of childhood vaccines. I was stunned by the opening paragraph:
"It's a staggering statistic that suggests the United States is facing a ticking public-health time bomb: Nearly half of Americans have blood sugar levels high enough to be diagnosed with diabetes or pre-diabetes..."
..."'Type 1 diabetes is increasing at epidemic rates,' [Brownstein] explains. 'Two thirds of Americans are overweight or obese.
'Either we learn to properly treat adult-onset diabetes or our healthcare system will collapse due to the cost of treating so many people.'"
If we think beyond just the children with autism and consider all the other exploding health problems out there, like the epidemic number of people with diabetes, asthma, life-threatening allergies, seizure and sleep disorders--the future looks particularly bleak. I just finished with "Welcome Back Wednesday" at our local high school, and I collected all the behavior meds, Epipens, and inhalers we'll need for the new school year. Things aren't getting better health-wise for Americans. We expect people, especially our children, to be sick. We know doctors won't be able to tell us why we're like this, but they'll have pills, medications, or devices so we can adjust to our health problems.
So while many of us see autism as the epidemic that will eventually break the system, there are plenty of other things to worry about. And through it all, doctors, health officials, and politicians act like nothing is wrong. Actually for our candidates this election season, the health of Americans should be a major topic right along with terrorism, immigration, and the economy.
I also asked MIT senior research scientist Dr. Stephanie Seneff about the special education trend in her state. This was her response:
"As a Massachusetts resident, it is alarming to me that the autism rate has increased more than four-fold in just 12 years in Massachusetts. It's even more alarming that the Massachusetts government doesn't seem to see this as a major problem. If this increase continues unabated, clearly the school system will eventually become overburdened to the degree that regular educational needs are left unmet. It's probably already happening. How can we continue to shrug our shoulders and claim that we don't understand what's causing this epidemic, when the answer is staring us in the face?"
Anne Dachel is Media Editor for Age of Autism.