Front Burner - How ‘alternative’ autism therapies lure in frustrated parents

Episode Date: November 26, 2019

In 2008, Sandra Hart wanted to get her son Christopher some extra help. He lives with autism and has limited verbal skills, and his mother was frustrated by mainstream medical treatments. Christopher saw a chiropractor for cranial adjustments, and later went for electro-dermal testing. Sandra Hart is not alone: alternative therapies are getting so popular, the Canadian Pediatric Society has created guidelines to help doctors deal with questions from patients. Today on Front Burner, CBC health reporter Vik Adhopia on the boom in “pseudo-scientific” treatments advertised to treat autism.

In the Dragon's Den, a simple pitch can lead to a life-changing connection. Watch new episodes of Dragon's Den free on CBC Gem. Brought to you in part by National Angel Capital Organization, empowering Canada's entrepreneurs through angel investment and industry connections. This is a CBC Podcast. Hello, I'm Jamie Poisson. 11 years ago, Sandra Hart took her son Christopher to get some help. Christopher lives with autism. He's got very limited verbal skills. And Sandra, she was frustrated with the treatment available to her and her son.

So she started visiting alternative health therapists. A chiropractor convinced her to pay for cranial adjustments. Someone else sold them something called electrodermal testing. Sandra spent thousands of dollars on this stuff, and she's not alone. In fact, alternative therapies are getting so popular that the Canadian Pediatric Society has created guidelines to help doctors deal with this situation. Because if they don't, doctors worry patients could be pushed away from evidence-based medicine. Today on FrontBurner, an inside look at pseudoscientific treatments advertised to treat autism and why they've become so difficult to push back on. Vic Adopia is a senior reporter in the CBC Health Unit. He's been covering the story for a while now. Hi, Vic. Hi there. It's such a pleasure to have you on the podcast for the first time. I

love being here. So can you tell me more about Sandra Hart and her son, Christopher? When was he diagnosed? Well, he was diagnosed as a child when he was little, as are a lot of kids. It was clear that he was not acquiring the verbal skills that little kids do. When he was about 10, Sandra was desperate because she realized he was not moving ahead. And she, like a lot of, uh, parents of autistic children go online looking for clues, you know, networking with other parents. She had learned of a chiropractor not far from where she lives outside Barrie, Ontario, that was offering, uh, these kind of cranial adjustments. Because, um, apparently the bones on your skull, there's, they can still be manipulated. They don't quite form until after adolescence. Because apparently the bones on your skull, they can still be manipulated.

They don't quite form until after adolescence. Well, at the chiropractor, it was just cranial adjusting. So he would just, you know, take his head and move the bones apparently back into alignment from what we were understanding. And that, in his explanation, would take the pressure off. So his argument was, well, we got to go in early, and this is one of the causes of autism. And what underpins this is this idea that a subset of chiropractors believe that there is something called birth trauma, that babies, when they're born, the majority of them actually experience head trauma. It's totally not accepted by the mainstream medical system. Ask an OBGYN or a pediatrician, they'll say this does not happen.

And so their argument is that there are all sorts of disorders and problems that can be corrected if a child's cranium is slightly manipulated for repeated treatment. Okay. And what kind of other therapies did Sandra Hart try? Well, after she saw the chiropractor, he told her, you know, there's this other therapy that you can, you know, is also offered in my office and it's this electrodermal screening. And basically the way she described it to me is you hold these two little rods or Christopher does, and it gives you all this information about, you know, your organs and your glands and your nervous system. This was hooked up to her machine, and she would get all the readings that are in the

report, and she would be able to tell us from there what his body was missing. And it's... Sounds like Scientology, like, you know how you hold those rods? Totally. And it's scientifically implausible to give you that much information. You can offer this, but it can't be used diagnostically. But it clearly was in this case. It gives you these readouts.

And the treatment is all these nutritional supplements, which lo and behold, the technician also sells. So she spent hundreds of dollars on that, two thousands on the chiropractic treatments. And it was just, it was a lot of money. Were these treatments hurtful to Christopher in any way, or did Sandra feel like they helped him? Well, that's the problem. It was not painful in any way, but eventually, Christopher, in his limited way, just said, no, like, he didn't want to go anymore. So I mean, that was and she said, I can't really tell if it helped because he was getting all the other sort of mainstream treatment and therapy. So give me some examples of what that might be. Well, it's, for example, ABA therapy, which is applied behavioral analysis therapy,

or you'd see speech therapist, which is really important at that sort of early developmental age, because that's one of the main telltale signs is a late acquisition of vocabulary. So, you know, his vocabulary was developing. So it's hard to say if it, you know, for her in her mind, even though scientifically, there's nothing to this, in her mind, it's hard to sort of dismiss it. You can kind of certainly see where she's coming from here, hey? Like, just wanting to do everything possible to try and help her son. Exactly.

It's desperation. It's, you know, you're scrambling and you want to spend everything you have on getting the best therapy out there, even if it's unproven, even if it's still not backed by science or if it's promising. You want to try it all. And there is a lot out there that isn't backed by science, but it's available. You know, we get judged for everything we do as special needs parents. It comes with the territory, but it kicks it up a different level when you're talking about wanting the cure for your child. So that's where the desperation runs in. So can we talk about that? Like just how common is it in Canada for families with children who live with autism to try these alternative therapies? Well, the Canadian Pediatric Society estimates is anywhere from about 30 to 95 percent of families where the child is on the spectrum may try some form of alternative therapy.

And, you know, that's really what prompted them to do something about it because, you know, you only have finite resources. And yes, a lot is covered by the public system, but there's a lot that isn't. For example, it's critical to get a diagnosis early because the funding doesn't kick in for all those treatments. So some parents will pay for the diagnosis earlier outside the system instead of waiting. So that sort of, you know, you have a finite amount of money. And so if you're spending on things that don't work, you may not be able to spend it on things that do work. Did you get a sense from the families that you spoke to that they felt like, you know, the mainstream system and the traditional system, for lack of a better word, was letting

them down in any way? Like, could that explain why they're also going to these alternative therapies? It does. In Sandra's case, she said, yeah, there was the one of the therapists that she was seeing at the time for Christopher didn't hold out a lot of hope when he was 10 that he could actually speak. Another parent I spoke to here in the Toronto area, Kathy Wright, she said that, you know, she enrolled her son in a clinical trial for a drug trial that that didn't go well. And she also felt like her son was being written off by the system. Like there really

wasn't a lot of hope that things would improve. So it's that lack of hope. And then on the other hand, you have this chiropractor, for example, who feels really confident that this works. You can watch a video of him online just saying, I can correct, you know, he'll say autism, ADHD. And it's like, okay, well, why not give it a shot? You know, like, what's the harm? That's often often that like, you know, if it's nothing that's too intrusive, why not try it? I want to talk about a few other treatments out there. But first, we should also say that some families seek out no treatment, even standard treatments, like you mentioned, like verbal coaching,

you know, why is that? I mean, there is also a notion out there, the neurodiversity argument that these children are hardwired in a different way. And a lot of these therapies are aimed at making them conform to us sort of neurologically normative people. Right. Like the way we think. Like act like us. That's what we're training kids to do is like act like you're just one of the

other kids. And that could be potentially harmful too. And that's the argument that you do hear from some parents and some groups that say, you know, we're offering these therapies from our perspective, but these are kids who have deficits, but they also have strengths. I spoke to a doctor in a family doctor in New Brunswick, Dr. Philip Schoenard, and he said, sometimes we don't offer parents a lot of hope. Like we just we focus on the deficits and they don't need to always hear about that. You know, we don't talk about the strengths. And I think that that's something that needs to be always addressed is we always have to focus on, you know, autism is a series of cognitive strengths and challenges. So I think that's key and that's important.

So that's a really interesting point. Also, it's been my experience that doctors are very rational when they speak to parents. I have a cousin with a child with disabilities on autism, but, you know, hearing some of the conversations that she's had with doctors has taken me back a little bit. It has been so frank, so data-driven. Yeah. And, you know, I wonder if that's part of it as well, sort of what you mentioned, you know, this sort of lack of hope sometimes. Indeed. hope sometimes. Indeed, it's the straight talk which the Canadian Pediatric Society, you know,

they say you got to accept that parents are, you know, they're doing this other alternative stuff. It's kind of in their belief system now. This is just the way North America is where we have these kind of alternative health views that aren't necessarily supported by science. So it can sort of challenge those views when you're so blunt like that as a physician. And that's often the risk physicians face is that, you know, too much straight talk could make those parents feel like they're being judged for their views. And then they will shut down and not share what other treatments that they're getting for their children. Did Sandra Hart, and did she talk to her family doctor about this?

She did. She said her doctor's great, but he didn't offer a lot of guidance. He said, well, you know, yeah, you could try that. Yeah, sure. Give it a shot. Sounds like, you know, there's no harm. So that was kind of his view. But she also said that, you know, after I was talking about the electrodermal thing with her and she was bringing out all the paperwork and she was just shaking her head looking at it because you can't believe that she, you know, followed this stuff. And she said, I don't think I actually talked to him about this. You know, as parents, you feel sort of defensive about going for all this stuff that may not be supported by science. I want to talk about some of the other alternative therapies that exist out there. So we've talked about cranial adjustments. We've talked about electrodermal testing. What else is out there? Well, there's a broad range. The most basic stuff is nutritional supplements and vitamins. And that

sort of, that falls in the purview of, for example, naturopathy. There's also diets that are restrictive, cutting out dairy or gluten. But on the other end of the scale, there's chelation therapy, which is blood detoxification. Right, I've heard of this. Yeah, and it's very similar. There's hyperbaric oxygen therapy too. And those are therapies that are usually reserved for people who have carbon monoxide poisoning or some sort of occupational injury from toxins. And what's behind that is this idea that children or people with on the spectrum actually have toxins in their blood. This, again, is not supported by science. It's rooted in that study that came out 20 years ago, Dr. Andrew Wakefield, I'm sure you remember, his discredited study from the late 90s. He had his license taken away.

He made this link between vaccines and autism. The Lancet Medical Journal has formally retracted a paper that linked the vaccine for childhood measles, mumps, and rubella to autism and bowel disease. rubella to autism and bowel disease. So even though that study has been discredited and withdrawn, the idea persists that these kids have some sort of environmental toxin that they need flushed from their system. So that's what chelation and hyperbaric oxygen treatments are all about. And those are treatments that are, in fact, doctors say are risky for children to do. The Canadian Pediatric Society is now providing guidelines to doctors on how to talk about these alternative treatments. So what advice are they offering? What do they want to see from doctors? There is an acknowledgement after they,

you know, they consulted widely. There is no universal approach to treating autism. It can vary from province to province and region to region. So they came out with some very general guidelines for everything from the diagnosis side to the treatment side. And they've taken a middle ground saying, look, we know parents do this. We can't risk alienating them. We have to walk this fine line. Because if they're not, if they don't feel open with us, pediatricians and family doctors, then there is the risk that they just sort of start navigating this stuff on their own. And there are financial risks, there are emotional risks. And, you know, just sort of going down rabbit holes of these endless treatments. That's what happened to Sandra Hart.

She was told 10 treatments. It was more than a year and a half later and she'd spent thousands of dollars. So they're saying, you know, listen to your patients, create this dialogue. And if they insist on trying one of these, not the dangerous stuff, not like chelation or yeah, then introduce it one at a time so that it can be monitored. In the Dragon's Den, a simple pitch can lead to a life-changing connection. Watch new episodes of Dragon's Den free on CBC Gem. Brought to you in part by National Angel Capital Organization. Empowering Canada's entrepreneurs through angel investment and industry connections.

Another question I have for you, you know, if these treatments aren't based on science, if there's no scientific evidence that they work, why are these alternative health specialists allowed to advertise them? Well, because there's a lot that's not known about autism and the fact that it is a field with so many unanswered questions and what was, you know, considered a strong hypothesis 10, 15 years ago has been discredited. So it's in this. Right, the vaccines hypothesis. Exactly. And so in this vacuum, that's where these therapies move in.

And, you know, there are some regulatory restrictions a little bit depending on the profession. For example, naturopaths and chiropractors, they have their own provincial regulatory colleges in most provinces. And they will put some restrictions on it. For example, chiropractors in BC and Ontario are not allowed to talk about vaccines because there was this subgroup of chiropractors who, you know, come back to this idea of vaccines are toxic. And what could happen to them if they do? They can be sanctioned or censured or risk having their license taken away, which is just like the College of Physicians and Surgeons. But there's such an inconsistency about it. For example, the Chiropractor College in BC had on its board people who had anti-vaccine beliefs.

Do you think we should even be calling at least some of these therapies alternative medicine? Are we doing a disservice by just using this kind of language? Should I be calling collation an alternative therapy? Yeah, that's, I mean, there are people who will say that's just pseudoscience or quackery. And there is a group of doctors across the country. Dr. Philippe Chouinard is one of them in New Brunswick. There's one here, Dr. Michelle Cohen in Ontario. And they call out a lot of this stuff and they're pretty blunt with it saying,

this is quackery. We've got to do something about this. It's more than just a benign treatment. A lot of times there's a lot of emotional investment involved. There's a lot of time involved and there's a lot of money involved. And not only that is we have to also focus on what kind of impact is this having on the child. I mean, some of these treatments changing their diet in a restrictive, in a significant way, or any of the treatments that are a bit more invasive, we have to think this is having an impact on the child. For example, in New Brunswick, naturopaths were marketing themselves as family physicians. And through the pressure of family doctors, they took those naturopaths to court or the College of Physicians did through pressure. And they can't advertise them as such anymore. So it's kind of being left to a lot of doctors and people in the field.

You know, Tim Caulfield is a health policy lawyer in Alberta. Very outspoken on this. Very outspoken. Jen Gunter, who's now in the States. But, you know, from a regulatory perspective, there hasn't been a lot of success. You have to jump through so many hoops. And even like an MD, there was an MD in Ontario who offered chelation. And, you know, there was a complaint filed against him.

He went to the College of Physicians and Surgeons. And they said, well, he's operating, you know, on the best knowledge that he has. And he's offering this treatment and he's allowed to. So, you know, it's not a perfect system, even for doctors. Yeah. And I would imagine as a parent trying to navigate that exactly and and you're going online like how could you not resist and i mean if you just google you know the city you're in autism treatment you're gonna like

half the stuff you're gonna come up with is not supported by mainstream science okay i want to circle back to sandra hart what does she say now about these therapies that she tried? Like, would she do this all over again? Does she regret having chosen this path? Yeah. I mean, I asked her that and she, she had regrets about the way she went about things, but she said, it's hard to regret not trying everything out there. And she said, you know, he was getting this chiropractic treatment that, you know, she sees videos of the chiropractor now and she kind of shakes her head. But she says, I had to try, you know,

like she says that she wouldn't have done her job as a parent if she hadn't tried it. I can't look back and feel defeated about that because I don't have that, well, what if in the back of my head because we tried it. Actually, I heard that from another parent too. And she said, if you know something is out there and you don't spend the money, even borrow money to do it, you feel like a failure as a parent for not trying. Wow. Vic, Adobia, thank you so much for this conversation. It's really interesting and nuanced, and I'm so happy that you're able to come by and explain it to me.

Yeah, you're welcome. That's all for today. I'm Jamie Poisson. Thanks for listening to FrontBurner. For more CBC Podcasts, go to cbc.ca slash podcasts.