Open Source Autism School

We live in the tri-state area surrounding New York City, which turns out to be a sort of national hotspot for high-quality (meaning effective at recovering a significant portion of children) programs for children on the autistic spectrum. Of course, each of the well-known private nonprofit schools only has space for about 30 kids total, and the low “graduation” rate from these programs means that only a few spots open each year. What this means is that although there are hundreds of children on waiting lists, no more than 14 might get in any given year.

In a visit to one of these schools, the director said to the assembled parents, and not jokingly, that rather than hope for a spot off the waiting list, they might consider starting a school, and that the director had lists of interested parents.

Recognizing that recently formed schools took a solid year of planning to get off the ground, I wondered whether the institutional knowledge required for such a project might be more readily leveraged, and the project duplicated around the country, in the manner of an open-source project. Certainly there are economies of scale to be gained from experience even in specific jurisdictions, and other issues, such as curriculum, should readily be shared and improved upon across a number of schools.

We will contact two recently formed schools and ask their boards to share as much as they are willing to about the formation process.

We have experience forming several nonprofits and related organizations, so if the project gets traction, we’ll donate the time and expertise necessary to create a sustainable structure to protect the resources and keep them available to parents.

What is science?

The goal for this post is to explain what the “science” crowd thinks. As science-minded people, we generally subscribe to the scientific viewpoint, and we think that most people, when it’s explained properly, actually agree with the scientific viewpoint.

The first point to remember is that the scientific viewpoint is about process not results. The key element in the scientific viewpoint is a preference for the scientific method as generally practiced across all fields of science. What that includes:

1. Experiments are well-designed
2. Methods are described
3. Results are analyzed to be statistically significant
4. Peer review is the primary method for identifying failures, mistakes, and weaknesses in research.

Across all of these elements is the theme of humility: we expect honest scientists to understand that they may be unconsciously biased and therefore strive for double-blind designs; we expect honest scientists to recognize that coincidences happen all the time and therefore strive to find significant results; we expect honest scientists to understand that correlation is not causation and therefore develop reasonable hypotheses based on otherwise reliable research.

This is my view of what the scientific viewpoint is. It is humble; people will talk about what the research shows, and while they may talk about ideas and hypotheses, they will not talk about them with certainty. We contrast this with the type of discourse we have seen from people who appear to lack the scientific viewpoint: they speak in absolutes, they tell you they have the answer, they dismiss competing evidence that is better supported by research. And, most telling to us, they often complain that scientific publishing is discriminating against their viewpoints or that they’re too busy “healing” kids to do the type of research that would convince others.

A school adminstrator we heard speak put this concept in different words, when asked about a treatment proposal other than ABA. He said that there are three possible ways to assess a treatment: it’s been studied and proven effective, it’s been studied and proven ineffective, or the studies that exist are inconclusive. The caveat that he didn’t mention, but that is indeed part of the makeup of everyone who thinks about evaluating treatments this way, is that these judgments are based on available evidence. People who understand how the scientific method is self-correcting always make an allowance for new evidence — whether better experiments, better measurement, new techniques, subgroup identification, or even new information from other fields.

So, although Jenny McCarthy may believe that vaccines are causing the vast majority of autism cases, she can’t point to evidence that supports causation. She probably doesn’t understand epidemiology or immunity well enough to evaluate the relevant studies, and in that regard she’s like most people who aren’t themselves doctors or scientists. . There are plenty of people who espouse similar views who should have the requisite skills, but they too often fall back on their hypotheses rather than their proof. And that’s true not just for vaccines but for diet, RDI, floortime, B12, and any number of other putative treatments for autistic spectrum disorders.

What we’re all about….

This is the inaugural post for 30 Seats, at 30seats.blogspot.com. We’ll host externally at some point and transfer these posts.

We are parents of a 3 year-old boy diagnosed with PDD-NOS. We live in northern New Jersey, where there is both a plethora of autistic children and a seeming wealth of top-quality resources for early intensive behavioral intervention, EIBI, and applied behavioral analysis, ABA. There are just seven high-quality schools for autistic kids in New Jersey: Alpine Learning Group, EPIC, Garden Academy, IEA, PCDI, Reed Academy, and Somerset Hills Learning Institute. These schools each have about 25-30 children and young adults in their full-time programs, typically ranging in age from 3-21 years.

Unfortunately, because of the limited number of children who transition out of the full-time programs, typically into supported mainstream placements, there are probably no more than 30 seats available to new placements for students. Each school might transition 2-3 students a year, and a higher number under unusual circumstances. No matter how you slice it, there will almost never be 30 new kids placed into these programs in a year.

Frankly, we think this sucks. It’s actually scary because without research supporting any other treatment paradigms, EIBI is the one realistic hope for our kids. If there isn’t enough quality in the public schools to support the kids there, then they spill over to home programs and center-based (i.e., private school) programs. It’s like having dialysis machines or chemotherapy for just a small portion of the sick — we would never accept it for kidney disease or cancer, and we can not let ourselves accept it for autism.

As we go along, we’ll create a number of short posts explaining our general thoughts and biases, as well as the rationale for our beliefs. Right now, we’ll focus on a few major themes:

  1. The need for and pursuit of new high-quality private schools for autistic kids,
  2. The current science relating to causes and treatments for autism,
  3. Public health concerns, including epidemiology and cost-benefit analysis of treatment paradigms and the lack thereof, and
  4. Legal issues that are reflected in current events.

Once we move to a new home, we’ll create resources to help parents construct home programs and, hopefully, create an open-source style plan for creating a new school in your community.

Comments and questions are welcome. Be polite to others.