The Money Question
“Every time another theory comes along, it is going to be THE answer. Strange it never turns out that way…”, a commenter noted on a post from yesterday, From Mother Blaming to Mercury Blaming. Too right: Since I have been writing this blog, I’ve noted anything from TV to environmental toxins to mothers, the MMR, and mercury and older fathers as supposed “causes of autism,” not to mention wi-fi. No wonder that the Interactive Autism Network in its research report noted that 1030 treatments to address those purported causes were listed by participants; speech therapy, OT, and ABA were the most commonly reported, with Risperdal, weighted vests or blankets, omega 3 fatty acids, and prayer all being included, too. No wonder, as autistic artist and writer Donna Williams notes in an article, that autism is become quite a business.
Williams in particular notes the fees that various autism experts charge for an hourly consultation, or to give a lecture, and also the fees for conferences (indeed, there is one I am planning to attend in early June, and I still have the registration form on my desk as I have to write a largish cheque for it……….). The autism and advocacy conference organized by my husband Jim last October was “free and open to the public”—Jim was able to get donations to cover costs, and went out of his way to make sure that lunch was included. Writes Williams:
Where are the hearts of ‘experts’ in relation to the autism community? [my emphasis] Some are deeply committed to people on the spectrum and their families. Some, through their excessive fees are proving they are really only committed to themselves. They don’t have to work for peanuts and lecturing and consulting is work and often involves hours of travel and I certainly have seen the horrors of exploitation of people on the spectrum exhausted by endless questions without anyone thinking for a moment of that persons humanity and isolation (Marc Segar 1974-1997 is certainly a well known example). But listening to a lecture should be priced around the cost of going to a movie. After all they both involve folks in seats attending for up to 2 hrs and if you do the maths, 50-100 people paying $5 to attend is $250-$500 and a perfectly good days wage for most people even factoring in a few hours of travel. If you come away from a movie only entertained and not informed and armed with affordable, even low or no cost strategies, you won’t mind. If you come away from an autism related lecture feeling only entertained and no better armed to manage living with autism or those with it, then you spent your hard earned $5-$10 at the wrong lecture.
Williams emphasizes that, if you don’t walk out of a lecture or conference with useful and (I would add) concrete strategies, the price of admission is not worth it. I’ll hazard that, if I walk out of a lecture or conference with a deeper understanding and knowledge (an admittedly vaguer entity), I feel that money and time have been put to good use. As Williams also notes, “don’t forget the library has free books you can gain lectures from in your own time, at no cost,” and, too, the resources on the web. Like many parents of autistic children, it is a rare event for me to actually, physically go to a lecture, and I am thankful that the web is always here. I also have some stacks of books in front of my computer—-more friends, more resources, to turn to.
In answer to Williams’ question—-”where are the hearts of ‘experts’ in relation to the autism community?”—one has to discern if those hearts are indeed not in the pocket where their wallet is, but right on their sleeve, and open to the public.
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POSTED IN: Cause, Environment, Money, Treatment
8 opinions for The Money Question
VAB
May 26, 2007 at 12:20 pm
Having just five minutes ago filed my travel expenses for a poorly attended conference (not on autism) at which I spoke, I am keenly aware that the cost of arranging a conference or a lecture involve much more than speakers fees. I also spent three full days preparing my 1 hour talk and two full days traveling. So if I was doing it for money, which I wasn’t, I would have had to be paid for six days work not one.
There may be a few rich autism experts out there, but I haven’t noticed any of the people who have worked with our guy driving fancy cars.
Julie
May 26, 2007 at 12:56 pm
I do not think it is the people that are working with these kids and adults everyday that are getting rich. It seems to be the “experts” who have the newest greatest research and treatment. I had a dr tell me that they could cure my daughter. This was throgh a third party and never speaking to me or seeing Rebekah. It would just be about 40 hours a week at 100 dollars an hour for as long as it would take. To me it sounded it rediculous for a number of reasons but I have had to defend our decision not to do this to many people. These are the ones who are benefiting from autism. Getting paid large sums for treatments that are not proven and even larger amounts to speak on topics that they do not really understand. I am thankful for all of the teachers and therapists in my daughters life who do treat her for much smaller amounts and share in our joy whem she makes progress. That is where the heart is.
monkeyandme
May 26, 2007 at 1:12 pm
As a single parent and teacher, new to all of this and quite overwhelmed, I am wondering this too. Where can someone like me go to find free or affordable consultations? I definitely see the need to charge such fees by the people who are doing such great work, and deserving to earn a livelihood for their achievements. That is not my issue. But it distresses me personally when I see great treatments and resources being discussed, only to discover the high costs. We can’t even afford swimming lessons right now. RDI sounds great, but out of my range. Just whining really. I just feel quite excluded from so many things that seem would be so helpful. We are fortunate to have access to a fantastic public school program with great teachers who have been an invaluable resource for us as we begin our journey. I just wish I personally knew more, had more time and money to learn more, and felt like just because we are financially disadvantaged we weren’t so resource disadvantaged.
David N. Andrews M. Ed. (Distinction)
May 26, 2007 at 2:26 pm
“It would just be about 40 hours a week at 100 dollars an hour for as long as it would take.”
Shit.
I’m in the wrong thing here… I’m on a work placement helping my ex-wife’s business to survive, and getting a sheer pitance for it from the state. I could easily charge 150 euros per hour and get filthy rich following the above practice principle!
So why don’t I?
Because I’m too bloody ethical, that’s why!
Autism is indeed becoming big businiess, and this comes from its constant medicalisation.
Jen
May 26, 2007 at 3:20 pm
Darn! I’m doing it all wrong. I feel bad accepting what the school district pays me for home therapy from parents when they’re paying me themselves. Compared to what I get paid now, I accepted mere chump change when I did 1:1 with a child while he was in camp.
The experts shouldn’t have to be poor, and they should of course get paid for their training and experience. However, if the expert demands such a high compensation that he or she isn’t accessible to those who could benefit most, what good is that person?
Kassiane
May 26, 2007 at 4:13 pm
I think my favorite is ASA, who demand that you pay for the privledge of speaking for them…including expenses, conference fee, et cetera, AND do a crappy job of seeing to it that the facility comes close to be acceptable.
I don’t mind doing gigs that will help people for just expenses, but I DO mind paying the conference fee for the “honor” of being asked about…oh…menstruation.
Kristina Chew, PhD
May 26, 2007 at 7:39 pm
And what an honor……. What frustrates me would be to pay someone who actually does not spend time regularly with my child. It’s the therapists who come every week, the teachers who spend the long hours and the aides, the babysitters (not that we have had many)—-they deserve the most. I can never express my thanks enough. I have a hard time paying anyone big $$$ if they only see my child very occasionally and do not actually spend time with him: I suppose Charlie’s neurologist would be up there with the highest hourly fee, and he really takes the time to interact with Charlie and carefully observe him. Of the therapists and teachers we have known, I can’t think of anyone who has left the field for “not enough money.”
monkeyandme: I just keep thinking it’s so important to have really good public school programs and as much information available as can be on the internet or otherwise free—especially with the web now. It seems to me that it can be possible to make as much information available to as many people as possible—to share knowledge about teaching strategies and other means of helping our kids achieve the most.
VAB
May 26, 2007 at 8:30 pm
monkeyandme: You can certainly get a lot of millage out of reading books. If RDI looks good, reading something like “The Child With Special Needs” (Greenspan) will give you a lot of ideas for things you can do yourself for nothing more than the cost of a boxfull of plastic toys.
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