Special Foods Autism treatment program
[vc_row][vc_column][vc_column_text]There comes a point at which you can no longer accept a person’s self-testimony of their expertise as a substitute for hard evidence of their success, and that point came 18 weeks into our participation in the Special Foods program for autistic children. We’d been reporting many weeks of small incremental improvements in the behavior of our autistic son, Justin. At about 16 weeks, my mother agreed to come help us with the increasing requirements of the program & provide objective feedback on its success. It was like the children’s story of The Emperor’s New Clothes where the little child says “but the emperor has no clothes on!” Justin’s behavior had been improving, but the vast majority of the improvements were due to the increased attention he received in the clean room, behavior modification, the strict diet, the rigid schedule we followed, and the demands we placed upon him. He was still clearly autistic at 18 weeks, and nothing we were doing at that point seemed likely to change that.
The program is run by Karen Slimak, President of Applied Science & Technology, International. When we began the program, back around October of 2002 I had a lengthy phone discussion of the program with Karen, and it seemed very promising. Karen was very convincing and positive regarding those that she’d helped in the past, and optimistic that our likelihood for success was high. She had numerous stories that supported her underlying theory that autistic children simply suffered from extreme sensitivity to molds, some foods, and chemicals in the air. The basic premise was that removal of all those influences in a clean room would permit autistic children to recover. We were told that we would put Justin in a clean room, change his diet, then watch for him to exhibit seeking behaviors that would allow us to eliminate the remaining exposures. For the last 8 weeks of the program, we could identify no exposures whatsoever (other than the distilled water, whose generation wasn’t going to improve due to equipment problems, detailed below), nor any seeking behaviors as predicted by the theory.
Karen’s web site (http://www.specialfoods.com) has write-ups on her environmental program for autistic children. She has a lot of data there, and speaks glowingly about the past successes (even “near miraculous”, from one published article). When we talked to her about how Justin’s progress would go, she told us how these autistic children become the most loving, obedient, eager-to-please kids in the world, like she’s seen it many times over. It was all very convincing, and she may be right, but there were many things that really began to add up to a big question mark as we learned how the program went. An analysis of our 18 weeks follows. I think it important that this information be made public, as there seems to be no published information countering that presented by the SpecialFoods web site, and parents of autistic children are by nature desperate for any cure, and hence especially susceptible to misinformation.
I am not the only parent who has had issues with the program (even resulting in litigation in one case), but I may be the one whose documentation of our problems is the most complete and easily-published. It is not my intent to slander the program, or Karen, but simply to present in detail the experience we had, all of which can be substantiated from past records. Families that want to try the treatment may have dramatically differing results, but they should take part only after being made aware of the risks & problems others have had.
Data collection & analysis questions:
One of her write-ups says she had 45 autistic children participate, 5 with diagnosis reversals, about 20 kids with an 85% symptom reduction, and another 20 or so kids with a 50% symptom reduction, with the last group being those whose parents didn’t do everything Karen asked them to do. When you look at charts she presents separately, she shows her clean room participants going to a 100% symptom reduction level. When we learned very late in the game that none of her clean room participants were the diagnosis reversals, it was obvious that she was grouping them in with the 20 “moderate performing” kids and saying that whole group achieved an overall 85% reduction. If you can prove the clean room gets you to 100%, why not brag about that separately, instead of lumping it in with moderate performers? The fact that Karen could not offer us anybody who would be willing to publicly vouch for the success of her program really made us suspect that she’s burned a lot of bridges with past families, like she has with us, by misleading them, having them foot the bill for her research experiments, and then misconstruing their results.
When we began the program, we were asked to list and rate Justin’s symptoms, with 10 being “life threatening”, and 0 being not present. The symptoms list was pretty much up to us. That was really a bad scale, as autism is not a life threatening illness (though many of her past experiences with food allergies may have been) and most of the ratings would be on the low end. As a result, we shifted to a different scale that let us rate more problems closer to 10. By the time we ended the program, we had changed scales two times, ending with a scale that compared Justin to “age appropriate” behavior, so that many of his behaviors like tantrums & hitting were at 0 even though they hadn’t gone away. We thought it strange that having had 45+ previous participants, the primary data collection method was no more formalized than it was. We could have listed just about any annoying behavior we wanted and made it part of the data set. We also could see how Justin’s symptoms ratings showed much more improvement than had actually occurred. Whether this was intentional on Karen’s part or not, we couldn’t say.
Confinement in the clean room, and the methods used therein, also contributed to a decrease in the symptom rating. We were reducing his “bedwetting” frequency and “wetting pants” frequency, not by the clean room, but by limiting his evening water intake, by waking him up at night to go to the bathroom, and by having him go potty every hour or 30 minutes throughout the day. That symptom obviously decreased, through no benefit of the clean room whatsoever. Justin’s diarrhea improvement was based solely on the change to Karen’s Special Foods diet (which is very good at doing what it does, limiting exposures in food-sensitive individuals).
Other symptoms like toe walking and hand flapping were reduced because he had a limited range in which to walk, and we had removed most of the stimuli that prompted him to hand flap. He really did seem to us to be a much more well-behaved child in the clean room, but when my mother came to help us at about the 16 week mark, she couldn’t really see any improvements in Justin over how he behaved with her 2 years previously.
Data collection was done by us, Justin’s parents, and was hardly objective. We had lots invested in this, were scrutinizing him every day to see any sign of improvement, and we really wanted him to get better. We were clearly biased in our assessments of his improvements. Karen further biased us, especially at the onset of the program. During our initial assessment interview, she would often say things like “and your whole house was full of carpeting that was giving off lots of VOC’s”, or “and you repainted the whole house before you moved in” and we would have to correct her and say “no, we took up all the carpet when we first moved in and went back to hardwood floors”, and “no, we didn’t have time to paint, and what was here before was already 8 years old and had significantly off-gassed”. She was clearly pushing us toward a chemical exposure cause for Justin’s autism, and there really wasn’t any “smoking gun” she ever could find.
When you see how Karen has shown past symptom reductions in autistic children, in nearly every case, there are alternative explanations.
She talks about how one child would sit very close to the TV, supposedly because of the smell of the hot plastic, and putting the TV behind glass stopped the behavior. Justin exhibited the same behavior with our TV that we had already put behind glass in a sealed closet in the clean room, and no amount of cleaning or additional foil sealing around the glass would stop him. It was clearly a visual stimulus, rather than a chemical exposure, and I suspect that with her other case study, putting the TV behind glass changed the reflection or visual image enough that the autistic child was no longer interested.
Another case in point was with a child that would rub plastic or painted objects frequently on his face near his nose. Justin always used to do that with plastic Star Wars spacecraft toys. We could eliminate the toys & the behavior would go away, but it was because the toy had disappeared. When we were in the clean room, we found he would do it with eating utensils, toothbrushes, or if we took all those away, with his hands. No amount of cleaning stopped the behavior, and I suspect he just likes to look along the objects for a pilot’s-eye view.
Karen has indicated re-breathing of contaminants in one’s own breath support the autistic child’s “chemical addiction” in the clean room. One “proof” of that is that autistic kids like to sleep with their heads under the covers. The big flaw with this interpretation is that autistic kids outside the room have so many exposures that they shouldn’t need to rely on rebreathing, and in Justin’s case, we taught him to sleep with his head uncovered in the clean room, and he has retained that behavior outside as well. An alternative explanation is that autistic people like to be squeezed or enclosed, and the covers provide that comfort while they sleep. Many of Karen’s supporting illustrations like these are anecdotal, and didn’t really hold up where we could test them with Justin.
When we asked to examine her past data in more detail, she wouldn’t share her clean room data with us, in spite of the fact that we were footing the entire bill for the research and had significant questions. She appealed to authority a lot when questioned – “My data has been reviewed by people qualified to examine it”, and “I’m the expert – you let me do my job & you do yours”. She chided me once for asking to talk to past participants, saying that her scientific colleagues agreed with her that past client confidentiality was the norm for research programs. When pressed, she offered to let us view one video made by a woman who moved to the ocean and built a house with two special clean rooms for her son (obviously with some financial means), and that there were maybe two others who could be persuaded to contact us. In the end, we never had any evidence except from others also participating in the program along with us.
When we began the program in October ’02 we were told first year costs would be $4,000 or so. By the time we got into the clean room in March ’03, those costs had skyrocketed to $30,000. Karen’s defense was that the program was still under development & additional unforeseen costs were now merited.
When we began, we were talking about how we wanted to get volunteers to come help the two of us out during the day, and Karen thought it was a novel idea. She even said she might have me teach others the methods used to get volunteer help. By the time we quit the program, we had had to add a third person to the clean room rotation (my mother), and Karen was telling us how we needed to get even more volunteers. We went from a 2-person operation to one that needed 4-5 people during that time frame.
When we began the program, we were told Justin would be getting out in 7-10 months. By the time we quit, we were being told that special new products were being developed that would allow us to make additional rooms of the house safe for Justin to be in.
When we started the program, we signed Karen’s form (also on her web site) stating that we knew it was research, we would share our data, we would do whatever she said, etc, but it was because her explanation of what we would be doing seemed reasonable to us. We were told Justin would be in the clean room, on the diet, and that his seeking behaviors would tell us what further things we needed to eliminate to get his symptoms to zero. Once we entered the room, however, and he didn’t exhibit any seeking behaviors to speak of, the cleanings got more frequent, the need for items to be washed & sent back in got more intense (requiring the additional volunteers), and things like brushing fingernails and toenails & washing those brushes out on a 30 minute cycle began to be added to the protocol without any obvious reason why we were having to do them. Karen’s response was that other children had exhibited behaviors that made these things necessary, but we didn’t sign on to address other children’s behaviors, only Justin’s, and it was the requirement that we do a generic protocol based on all children’s experiences, instead of one tailored to Justin’s problems, that really helped run us out of the program.
The equipment supplied as part of the program was a mess. The water filters we had to install used quick-disconnects that leaked every time the filter media was changed out (monthly) and actually contributed to mold growth under our kitchen sink. The filter media itself was just socks of cotton cloth with charcoal in it, and those socks would suck up into one end of the filter, cutting the water flow down so low it made it difficult to use the supply.
Because nothing could have plastic in it, we had to hook our washing machine up with soft copper tubing & nearly never got it leak-free.
The window filters we had to put in the room would settle & bulge their screens out at the bottom, requiring that we put aluminum foil over the resulting air gaps.
The window air conditioner we got at first had so many air gaps internally that I complained to Karen that it would be ineffective. She evaluated, and said the manufacturer had changed designs. She did let us exchange that unit for a revised, more expensive unit, at no additional cost to ourselves. We were supposed to use sodium silicate adhesive (water soluble) to glue aluminum foil up to the face of the unit, making it air-tight up to its edge, but I had lots of problems, because as you might imagine, air conditioners form condensate, which will loosen the foil. I had to refoil it three times and finally make a water-tight enclosure to set the unit in so that condensate would stop running down behind the foil and rotting the wood in my window.
No air filter was supplied on the face of the air conditioner, and because we were laundering nearly everything in the room every day, there was a lot of lint floating around. That lint plugged the internal workings of the air conditioner at around week 17 and froze the unit up two nights straight. After that happened, the unit began leaking into the window and would have rotted out into the room had we continued with the program.
The water distiller was a fully manual WaterWise model 1600 stove-top unit. It had to be so manual because automatic units have plastic or rubber internal components. The downside is that it’s nearly impossible to make distilled water with – if it’s not monitored constantly, it can easily get overfilled or run dry, either of which ruins the water. This had to be done by the outside-the-room volunteer who’s already doing more than they should be.
The personal air filters we had to run in the room and in the airlock were simply duct booster fans with charcoal media before and after the fan. Two of our four had apparent bearing or vibration problems and were noisy. The air flow was low, they had very sharp corners on the duct-connection tabs on either end (which if not ground off or set on something would tear holes in the aluminum floor covering), and the cords, being insulated with rubber or plastic, had to be completely wrapped in aluminum foil sealed with sodium silicate. The foil would crease on those cords as they were moved around and then tear around the circumference of that spot all the way down to the cord, requiring that they be rewrapped every week or two.
None of the equipment came with any instructions. I had already installed five water filters horizontally before finding out they were to be vertically oriented. All it would have taken is a “this end up” sticker. Our door trim strips that filtered air going into the clean room were intended to be installed in the door jamb, but because it was a clean room & nobody told me otherwise, I had already made the airlock doors close too tightly to install the trim strips that way & they were a constant concern that they were not tight enough to filter all the air.
Business practices problems:
It was common practice to bill for everything ordered from Special Foods, whether it shipped immediately or not. In one extreme case, we were billed for bedding before it had even been developed, and it didn’t become available for several months.
We received one shipment of clean room clothing contaminated with what looked like dog hair. We did receive an apology, stating that it was an employee problem (more about that in a minute).
We were shipped one set of “specially-treated all natural” toothbrushes ($18 each), only to get the exact product we can buy at our local health food store for $6. Not only were they not treated, they came in their original individual packaging, and were stretch-wrapped in the manufacturer’s store display case. We were again told it was a mistake and an employee problem.
We went through about 4 different customer service representatives during the 4 months we were in the clean room (& I think Special Foods only has 2 office staff besides Karen). Karen frequently complained about the lack of good help. One very helpful staff member who left resigned without another job lined up. We have asked some of them why they were leaving, but apparently they have to sign non-disclosure agreements to come to work and are prevented from discussing business practices with anyone.
Our experience in the clean room:
The clean room is a very stressful thing for the entire family. We received lots of donations to help us with the treatment, and had lots of volunteer help, but even under those circumstances, the constant equipment problems, the time constraints, the rigid in-room protocol & the pressures to do everything perfectly were really hard on everyone. Our daughter Leah was neglected a lot more than we would have liked. My weight dropped from 168 to 158 in four months even though I was eating all the program-permitted food I could find (fast food, junk food, anything), mainly due to stress. Nobody got any sleep to speak of, which only contributed to the problems.
We did see a calming effect on Justin in the clean room. He picked up this adorable rendition of “Daddy” that’s sort of a southern drawl “Dayuh-dee”, and it gets my attention every time. He had several significant accomplishments, and saw a dramatic increase in vocabulary, and a noticeable improvement in sentence structure. We never did see hand flapping or toe-walking go away completely, but they did decrease (we believe) because of the limited stimulus & walking space. He hand flapped much less on days without the TV on, which we didn’t need a clean room to tell us. The work outside the clean room was constant, meticulous, tiring, and stressful. The dishwashing protocol was a 4-step process, and very detailed work. Meals had to be just perfectly prepared, and laundry ran nearly all waking hours.
We washed approximately 8 loads of laundry a day, distilled 10 gallons of water a day, and hand-washed dishes in small batches perhaps 10 times per day. Due to the constant soaking & peroxide exposure, my fingernails delaminated all the way back to the root, and even now, 3 weeks out of the program, I still have V-notches in the middle of three fingernails. We used about 24 gallons of hydrogen peroxide per week, which even at our local Sam’s club’s price of $0.72/quart is still significant. We had to exercise constant vigilance to avoid microscopic levels of mold in the shower, wiping walls & floor after every in-room worker’s shower, and using peroxide on the entire bathroom each evening. In-room workers had to shower in the filtered shower water, then rinse with hydrogen peroxide & distilled water. Both Sherri’s and my hair bleached & broke off from the peroxide.
We never were able to perfectly adhere to the in-room protocol, which is I’m sure Karen’s reason why we were not successful. Our distilled water would often get ruined. We were required to keep Justin within 2 feet of us at all times, and if he had an accident in his pants, it counted as a protocol violation. When he went to the bathroom on one of our fishbowls (what we used for potty bowls), he had to hold an air filter in his face & breathe from it (which he hated). We washed him from head to toe every 1.5 hours with special soap, distilled water, and hydrogen peroxide (from special 8 ounce glass bottles, at $38 each). His skin became so dry and irritated from the washings that he often would complain of pain even if it were just wetted with water, and our only solution was to slather it with Special Foods lip balm at $9/tablespoon. Every 30 minutes we brushed his teeth with peroxide and nails with soap, water, peroxide, and then water again. Meals couldn’t sit out more than 15 minutes for fear of mold growth. The room had to be completely cleaned with peroxide, then water, every day, and soap, water, peroxide, and water every week. Whew. Stressful is an understatement.
Justin picked up a number of good habits in the room, we believe mainly because of his close attention from an adult. His bowel function improved, which we think the sugar-free diet, likely also the Special Foods products, did for him. We hope he experienced some bowel healing in the room, & plan to keep him on a restricted diet for the foreseeable future. We are continuing with some of the program’s healthy living aspects, though in our own way. (Whole house dechlorination instead of those problematic individual filters, laundering in only borax, airborne contaminant removal via ionic filtration instead of a clean room, low VOC paints, etc.) Justin has experienced some regression since he got out, but we are convinced it is because we have been so occupied putting his room (and the rest of the house) back the way it was.
As to the evidence for Karen’s claims, we haven’t seen much. Justin did have a real problem putting his hand down his pants when we first went into the clean room. Karen said he was picking up contaminants & smelling them to get chemical exposures, and she was right that washing him every 1.5 hours stopped the behavior, but he was doing this before he went into the room, when chemical exposures were so plentiful he shouldn’t have needed this mechanism, so even in this possible confirmation of her theories there is room for doubt. Of course, Karen’s explanation to us has been that we’ve never achieved in 18 weeks the levels of cleanliness required to see confirmation of her theories, but a quick review of her literature turns up dozens of cases outside the clean room where she claims her theories are proven, so why should we have to get to microscopic levels to see any evidence of them with Justin?
In summary, even though there were some things with the program that could be construed as having been about money or as having been dishonest, I can’t say that I’ve found any conclusive evidence to support that. Karen says she doesn’t take a salary, and she charges no consulting fee for any of the weekly phone conversations. It’s conceivable that she gets royalties from her patents on the food products, or that she writes her house off as a business expense, or something else, but I can’t say without any evidence. The few items like the 200% markup on the unmodified toothbrushes could easily be explained away as incompetence, rather than criminal intent.
The products themselves are extremely expensive, but based on what has been done to develop them, don’t seem unreasonably priced. It seems more plausible that Karen has a very well-developed specialty foods program that had some initial success in helping some autistic children, which prompted her to develop this more extreme program. (Many of the things we experienced, such as the 1-10 scale with 10 being “life threatening”, seem ideal for folks dealing with severe allergic reactions, but really absurd when applied to autistic children.) The data that “proves” the new program is being successful is a result of misinterpretation of results, poor data collection techniques, some food-related benefits (as Feingold or other food-based autism treatment programs can also show), and some wishful thinking. Her current lack of success with every clean-room family I’ve been in contact with pretty much bears out my conclusion. I do not want to discourage any family from trying her methods, but I do want them to be informed enough of the problems with the supporting data and treatment method to be able to go into the program with eyes wide open.