Now This, This is a Rant

Sometimes, I get the most interesting of discussions going on posts I least expect it from. My facilitated communication post got lots of attention and now my rapid prompting method post has attracted the determined attention of a former volunteer at HALO and satisfied customer (well, actually, two at this point).

I've been told that my position on RPM is because I'm too scared to know better (see Lynne's response down around the sixtieth response or so): "I am aware that with ignorance comes fear, but do not be afraid. Learn about RPM and maybe then you won't strike out in fear." I admit I was somewhat sarcastic in response to that.

My conclusion about RPM stands:

Rapid Prompting Method has been around about a decade. There are no studies whatsoever on this method. There are testimonials. That’s it. There is no way to assess whether autistic individuals who are the recipients of RPM really benefit and gain skills from this method. There is no way to assess whether responses are a result of the prompter’s co-opting. I’m fairly sure of one thing. If it were me, and I had an adult doing RPM on me, and I could learn to type, respond, communicate, I sure as all get out would do it as fast as I could just to make the noise and the personal space crowding stop. And I’d have a fair bit of trauma as a result of the experience. But that’s just me. Maybe she really has helped hundreds upon hundreds of autistic kids. We’ll never really know, though. I mean, if RPM hasn’t undergone testing in a decade, is it really ever likely to? Especially as long as she can make a good living from it?

Rapid Prompt Method doesn’t pass the evidence test because it has never been subjected to the rigor of a scientific study. It’s unlikely that it would, either. 


To this, we can add that those who have psychologically, emotionally, and financially invested into HALO really hate it if you note there is no scientific evidence for its efficacy. 

Here's my real bone of contention. There are a lot of treatments out there for autism that make the practitioners big bucks. ABA costs 50 grand a year (we've never used ABA, by the way, at least not paying someone else to do it. I got the textbooks for the master's program in it, read them, modified it for my kids and did it myself). Hey, buy into the Wakefield woo, and you can spend around 400 bucks an hour with the docs at Thoughtful House, which insurance doesn't cover. And then there's the DAN! docs, and chelation. What about HBOT? So many choices for parents and lots of message boards out there to help you figure out how to hide the nicotine patch you're slapping on your kid from any prying eyes.

So, folks come along, and they come up with an idea on how to help autistic kids and they open up clinics. Geiers, anyone? And parents take that the treatments are safe, legitimate, etc., and off they go to spend their money because helping their kids matters. And it does, I'm arguing strenuously that helping our kids achieve their potential absolutely matters, is of primary importance. But we do that while keeping them safe, respecting their personhood and not using them as guinea pigs. Period. Because some things are too important to give our kids mining chelators on their breakfast foods, you know?

Alright, then, you've got a plan to help autistic kids and you want to share it. What do you do? You could put it out there for parents for free, since it's a teaching method, a one-on-one interaction with the autistic child to help explore his intellectual potential. Right? That's the moral thing to do, isn't it? Share it around so that you can help the most people possible? 

Or, you could steep it in a fair amount of mystery, create a series of hoops to pass through to get to the method proper and make your living off of helping the kids you could physically come into contact with. Which one serves the greater good?

I understand full well that there are educational interventions that are not backed by scientific evidence. I know, having taking both undergraduate and graduate education courses in the field, just how soft education is, science-wise. Plus, teaching experience that spans back to the mid-90s; that comes in handy, too. I'm not and have never suggested sitting on our hands while waiting for science to catch up. We make darn certain, though, that what we do doesn't put the child at risk.

Where there is no risk of harm, where the child is respected, a close teacher-student relationship is sure to make a difference, even if we don't have it scientifically quantified. I also know how much harm can be done when the teacher is woo-based or has an educational philosophy that doesn't put the child's well-being first. 

I'll repeat again, I don't know if RPM works. What we have are testimonials and anecdote. We have two sample videos that show a student being physically crowded, strips of paper being ripped, endless chatter and no space to think, with forced choices. We can't see what's on the paper, we can't really hear well enough, we don't know. I do know, though, as someone who has taught both high school and college, and who spent ten years teaching my oldest (and then later my youngest two), that if this is how RPM proceeds all the time, it is intrusive and invasive of a child's space. I am sure parents would be more likely to modify it to fit their children, like I did after reading the ABA textbooks and employing what I know about cognitive-behavioral techniques, and so that once again, we may have parents using a terminology that does not reflect what the website provides examples of.

HALO isn't based on sound scientific theory; it's one woman's speculations, and it's lead to a good way of life for her. Does it work? I don't know. I do know that folks who are thinking clearly might wonder why something like that has to be bought instead of having the information on how to implement it provided for free. Why all them hoops are necessary and why it costs at least $725 dollars to get the training (after you've paid for the video and sent the kid to Soma's camp).

And the argument that people have to make a living and deserve to have their time compensated won't hold any sway with me. Do you see any advertisers here? Any sponsors? A donation button? Why, no, you sure as shoot don't. And if you're a regular here, you know that a fair amount of my fairly limited free time is spent reading journal articles or, gads, the frikking woo, trying hard to provide evidence-based articles for parents so that they'll have access to stuff they might not otherwise have come across. And I don't charge a dime. I don't go tell you to buy books, either, to put back into a nonprofit that doesn't seem to work the way nonprofits ideally should. 

That's alright, I've been looking into nonprofits, and what I'm noticing is that they seem to be a way to take in money without offering a product and all while not paying taxes. NVIC anyone? Barbara Loe Fisher doesn't get a whole lot of salary from it, but it's more than I make in a year. Nothing to sneeze at, is what I'm saying, to borrow a Thelma.

Parents may be grown ups and have to live with their decisions, to paraphrase the nurse who seems to think I'm operating out of fear, but it's the kids who really live with those decisions. And the parents who self-justify themselves right on into the biggest corners you ever saw. 

See, there ya go. That was a rant. 


Liz Ditz said...

Hi Kim.

This is the NOT the main thrust of your article, but I do want to make it clear:

I've been looking into nonprofits, and what I'm noticing is that they seem to be a way to take in money without offering a product and all while not paying taxes.

Erm, not exactly.

First, caveat: I am not an attorney or tax specialist.

Here's what the IRS says about organizations who may have a 501(c)3 designation

The exempt purposes set forth in section 501(c)(3) are charitable, religious, educational, scientific, literary, testing for public safety, fostering national or international amateur sports competition, and preventing cruelty to children or animals. The term charitable is used in its generally accepted legal sense and includes relief of the poor, the distressed, or the underprivileged; advancement of religion; advancement of education or science; erecting or maintaining public buildings, monuments, or works; lessening the burdens of government; lessening neighborhood tensions; eliminating prejudice and discrimination; defending human and civil rights secured by law; and combating community deterioration and juvenile delinquency.

An entity with a 503(c)3 designation can raise money (within legal boundaries) while offering funders a tax-deduction for said donation.

You (or I) may think that the cause that the 503(c)3 is raising money for is worthless, but that's beside the point: if it meets IRS standards, it's legal, and despite our own opinions, ethical.

I mean, I think the "Institute of Higher Kazoo Studies and Symphony Orchestra" may be worthless...but that doesn't mean it's illegal or unethical.

Another example: my view on homeopathy is that it is a sham -- there's nothing in it. However, an enterprises that teaches the principles and practices of homeopathy may be an entirely legal and ethical enterprise, from the view of the United States Tax Code.

A third example: I've been associated with more than one 501(c)3 organizations that "take in money" for horse-back riding events, including lessons and competitions. Is this bad, evil, or a tax dodge? Not at all. Both the lessons and the competitions are in the organizations' charters and are part of the IRS tax-exemption documentation.

So to summarize: the tax code doesn't require evidence that a given educational institution's teachings or philosophy are proven by research, or have efficacy, in order to grant a 501(c)3 designation.

Turning to HALO -- I use Guidestar, and the HALO page is here. From the 2008 990, they raised about $11K in donations (or only 19% of what they had raised the year before, what is up with that?) $242K in "program revenue" (up 12% from 2008) and other reveneue of about $13K (down about 30% from 2008), for an overall net drop in revenues of 20%.

From this comment, Halo is not a school from Lisa Helt, who claims that Halo "isn't a school".

Wow. The Halo board hasn't done a good job of educating its board members about the nature of the enterprise and how to represent it to the public.

Contrary to Lisa's claim, Halo is indeed a school, at least in the eyes of the IRS. However, that doesn't mean that Halo has to hold classes for all students Monday-Friday, 180 days per year. It just means that it is an educational enterprise.

Jannalou said...

I would say that the main problem with the idea of not charging for something is that people assume that if they can get it for free or don't have to pay very much for it, it isn't worth their time. The more expensive it is, then, the more valuable it must be. There is a type of logic there, though it's rather shoddy and been proven false on more than one occasion.

That being said, when I was an ABA therapist I was always (always) appalled at stories of line therapists charging upwards of $25/hour for their time. Just to be clear, when I say "line therapist," I mean the people who come in and do the two-hour sessions (or however long they are) and aren't involved in any actual decision-making when it comes to curriculum and intervention strategies. Initially, I made what the government reimbursed the parents for my work as a line therapist. Later, I made what the government reimbursed for respite. The most I ever made as an ABA therapist was $15/hour, and that was only on teams where I was the lead therapist (the person who makes decisions in between meetings with the consultant).

Then again, I was only ever in it to help the families and the kids; being able to pay rent and buy groceries was a bonus (and often difficult).

KWombles said...


So noted. Legally, as long as it meets the IRS's definitions, the US government considers it hunkey-dory to raise money and not pay taxes on it, so long as it's one of those things listed. It doesn't actually have to help anybody or be morally upright.

It doesn't even have to give any money out. Autism Speaks, after all, thinks 39 cents on a dollar for donations is good enough to send back out. NVIC just educates, right? And schools get to be nonprofits. And families with nearly 20 kids can even call themselves a church, or so I hear. :)

Anyone, as long as they're willing to jump through the hoops, can set up a non-profit as long as the make it generally fit within those guidelines.

But we have the obligation as skeptical consumers to consider the information and the money line. Who profits and who doesn't; it should and does matter.