Debunking Autism Myths: Vaccines, Diets, Speech Drops & Leucovorin

Shawna: 00:00:00

Pseudoscience. I will have research. I'm putting that in quotation marks on their website that says this works and it'll be like published research.

Brittany: 00:00:07

Right.

Shawna: 00:00:08

And again, if you don't, like, didn't do, like, post secondary education for a long time and like, spend a lot of time reading journal articles and that sort of thing, you would think like, oh, this is research.

Brittany: 00:00:17

Yeah, yeah, yeah.

Shawna: 00:00:18

But it's like, not published in, like, real journals or it's actually like poorly designed studies that couldn't measure what they're claiming that they did measure.

Brittany: 00:00:27

Right. Hey, everyone, I'm Brittany, speech language pathologist.

Shawna: 00:00:30

And I'm Shawna, behavior analysis.

Brittany: 00:00:32

And we're your hosts at Neurodiversally Speaking.

Shawna: 00:00:34

This is a podcast where we bridge the gap between research and practice, exploring autism and neurodiversity through the lens of speech and behavior.

Brittany: 00:00:41

Whether you're a parent or a professional, we'll give you practical tips to bring into your home or your next therapy session.

Shawna: 00:00:47

Let's get started.

Narrator: 00:00:48

Welcome to the Neurodiversally Speaking podcast with Brittany Clark and Shawna Fleming from Elemenoe, brought to you by The Sensory Supply.

While we aim to make Neurodiversally Speaking suitable for all audiences, mature subject matter can sometimes be discussed, suitable only for those over the age of 18.

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You can also send us listener questions to address on the show at hello@NeurodiversallySpeaking.com Neurodiversally Speaking starts now.

Shawna: 00:01:36

Welcome back to neurodiversely Speaking. It's Shauna.

Brittany: 00:01:39

Hey, it's Brittany.

Shawna: 00:01:40

And we're excited today to chat about something that came up at the clinic that was our inspiration for today's episode. We want to talk about. There's all different sort of treatments out there or therapy approaches or products that have really big claims.

Specifically in the autism space is where I come across a lot of them. But I think in the world of social media, we all can benefit from how to be like conscious consumers and how to evaluate things.

And so today's podcast is not about being skeptical, but it is about really diving into what is the research behind that.

And I guess that's probably the number one question that we're hoping to answer today about a couple of common questions that we get from families that are thinking about trying out treatments or different options for their child that has autism or adhd. Sometimes it's just like a. In quotation marks, like a hyper kid. Oh, yeah. I saw this supplement online. It says it helps children.

And so today what we really want to do is go through some real examples of that with things that families are asking us about so that hopefully it's useful to other families.

Brittany: 00:02:42

Yeah. And actually I wanted to say that we actually do this for other stuff in our lives too.

So, like you said this today we're going to be talking all about autism specific stuff. But I love it when you and I will also have conversations. I'll be like, oh, does this Botox cream really work? Or like fake Botox cream.

Or like, but you know, or like this wrinkle cream, I should say. Or like, oh, what about this? And you'll like, take it through a whole analysis similar to what we're going to talk about today.

And so you can really apply this to lots of different things in life because marketing is just that it's so good sometimes it's so convincing. And like late night on Instagram, I'm convinced that I need this, like, I don't know, neck cream or whatever it is. Right.

And so today it's really not about, like judgment at all or if you've tried things, or if you've been curious about trying things. It's so parents, you know, obviously we're parents who, we just want the best for our kids.

And when you see something like that, that gives a promise or it's convincing, of course, like, you want to try everything that you can. And that's usually what parents will say to us. Like, we just want the best for our kids, whatever that looks like.

And so the questions that come to us are so genuine, they're so well intended. And we want parents to keep asking us. So please, like, if you've got questions, send them in. And we'd love to.

If it's something not covered in our episode today, like, we'd love to look at the evidence and get a response back to you.

Shawna: 00:03:57

Yeah.

And I would say, like, I have a master's degree and a large chunk of my master's degree was on how to do research and what is involved in a good intervention.

And then as a behavior analyst, sort of one of my specialties is looking at that and seeing if there is good control there and are they in making inferences versus there being like actual causal relationships. And so it's not for the layperson. And that's really like something that we study a lot in.

As in your master's degree for behavior analysis, really diving into research and how to evaluate it. And then I think for myself being I started my career in the autism world and continue in the autism world.

There are so many new things coming out for autism all the time that again, I get to flex that muscle kind of a lot.

Brittany: 00:04:44

Yeah. This isn't just something from the past. Like we'll bring up stuff that's across the ages sort of thing.

But it's like happening now and like on Instagram, on TikTok, like on Google Ads and stuff that you're seeing this stuff like every day.

Shawna: 00:04:56

Exactly. And so we want to look into things and be sort of weary of what we're consuming. And not that we shouldn't believe in new things that are coming out.

Right. There's lots of new technologies that's awesome. Or new products, etc. But it also doesn't mean that we just take everything blindly.

And so today I want to talk about science. Pseudoscience and anti science are sort of the three categories. There's some good ABA articles that look into this.

And so when we're looking at anti science, I think we don't talk about that as much. It like rejects the scientific method itself. It's like actually like against science. Hence the anti science.

Whereas pseudo science is borrowing from science and like taking things that are like potentially true.

Brittany: 00:05:50

Right.

Shawna: 00:05:51

And either applying them to their product or thing or making too big of a leap. And you'll these, this is like rampant on social media. You'll see big claims like if you live near a golf course, you live longer.

That was when I saw recently.

Brittany: 00:06:04

Oh, nice.

Shawna: 00:06:06

And so when you really dive into it, what they've done is they've kind of cherry picked the people that are included. And then it is correlational, not causational, but they've sort of made it sound like it's causal, of course.

And so I was saying we got to move to the golf course. Unfortunately it was not true. And then science is where we're like testing those claims. Right. And they're evaluated.

And so good science has to evolve. And so we've certainly, I've learned so much over the last 15 years and certainly we've evolved our practices too. ABA has evolved as a science.

Oh yeah. And that sort of thing. So those are. Today I want to talk about like science and pseudoscience mostly.

I would say some things maybe could be leaning into anti science.

Brittany: 00:06:47

Exactly. And so you mentioned that this is such a Big part of behavior analysis. And I would say it's. We talk a lot about this in speech pathology too.

And so we're going to lean on some of the frameworks that you use in aba, but in slp, we're looking at sort of evidence based practice as well, and they call it the evidence based practice diamond, which combines like a external scientific evidence and like rigorous studies with client patient caregiver perspective.

So you're taking the evidence and then you're also taking the perspective of the client, and then you're taking account your own clinical expertise and opinion as a clinician and then internal evidence, so informed by our data and evaluation of the client performance. And that's sort of how we're taught in speech pathology to look at these things. But I'm really looking forward to our discussion and really talk.

Diving in deeper mostly around the pseudoscience and autism specifically, because it does come up so. So often.

Shawna: 00:07:42

Exactly.

Brittany: 00:07:42

Yeah.

Shawna: 00:07:43

So one of the things that I was gonna open with is like, why bad science? Like, why do we want to sort of evaluate these claims? And what's the sort of why? Like, why does it matter?

And I think one thing that I was taught very early on by a mentor is that if we're trying out these other things, then we might be missing out on the thing that we know works.

Brittany: 00:08:04

Yeah, that's what I was thinking too. So like.

Shawna: 00:08:07

Like whether it's resources, like money or time away from something else. And so I think we'll keep circling back to that as we're evaluating some of the products that are out there.

Brittany: 00:08:16

Exactly. Like time and resources away from the thing that we know actually would be the most helpful.

And so it's not saying that other thing maybe could be, but if it's like, not as confidently, you know, in the right direction, then you're taking all those resources away.

Shawna: 00:08:32

Yeah, exactly. And then the second thing I would say, another reason why it matters is because it tends to shape society or cultural views.

What we think is true or what we think is scientific. And if something is not actually proven, and as a whole we're thinking, yep, that's true, then it can impact how we behave.

And so the example that I have is the refrigerator mother theory.

And that one I actually was exposed to kind of in my first year in the autism world because my mentor had a son with autism and actually grew up kind of with her son when the refrigerator mother theory still existed. And so this is the idea that autism was caused by cold and distant mothers. And so in my old mentor's life.

Her husband would sort of would think that she caused it, you know, and so like the last thing that a mother needs is more blame. We carry enough ourselves. And so Caner introduced it and then it became something that people thought was like the true cause of autism. Right.

And so then people are inferring that this mother is cold and she caused her child to have autism and what a terrible kind of burden to carry. And so that's one of my, I would say, reasons why I think it's important that we continue to look into claims or look into these theories that exist.

Brittany: 00:09:59

Right. And I think it's come back around again.

r mother was sort of from the: 1950

And so you're right, it's like such an important thing to name that what's sort of going around the words in the culture and like how these things are framed can influence how we think about something and how we think about people. Exactly, yeah.

Shawna: 00:10:34

And then I think in line with that is the. That vaccines cause autism. Yeah, that was. Has also been a really big one.

In the late 90s, Wakefield published a study saying that the MMR vaccine caused intestinal changes that then led to autism. And that was fact for a really long time. Right. People and even still. Right, yeah.

So I think at least in my career, when I first started in the career in the field, it was kind of like, oh, maybe like some people. Right. And then I think it sort of like went away for a little bit.

And then recently with all the changes, particularly in the US for us is where we're getting, I think sort of the trickle over where they're sort of moving away from evidence based practice. In some ways this idea has come back up again, whereas I thought it was gone.

But I do, I think an interesting part of the vaccine myth is that as a clinician I really like, I believe the research. Right. That there. And there's like now so many replications of this.

I think they've got like over a million people in a Danish study where they've shown like this is not the case.

Brittany: 00:11:41

Right.

Shawna: 00:11:43

But I have heard so, so many compelling stories from families and mothers. Right. And that is their real lived experience.

Brittany: 00:11:51

Right.

Shawna: 00:11:52

And every time they tell me, I'm like, well, you know, I don't know, like what you're seeing, like, it makes so much sense. And, like, I believe you.

Brittany: 00:11:58

I can remember that one mom sitting in our office and telling us like, it was a shift overnight. And she said, you know, I'm like, I forget what her.

It doesn't matter what her experience was or background, but like, she was some sort of science text or medical health professional or someone that was like, I take data, and I took lots of data on these things. And I remember thinking like, this is. And she said, I.

Like, I know the research, too, but I can't help but wonder because this happened and the change happened overnight. So anyways to say, yeah, we've heard from so many families.

Shawna: 00:12:29

And so what I would say there, though, is that the vaccine didn't cause it. Right. Like, what happens is when you get your vaccines, there's also the time where we're seeing autistic traits show up.

Brittany: 00:12:41

Exactly.

Shawna: 00:12:42

And so that's where it often feels like a switch. And like I said, when you hear the story, you're like, yeah, okay, I believe you. And I still believe them that that is their tr.

they did one in, like, early: 2010

And then I think a new one just came out last year. And now they've got like, over a million people that they've been able to prove that there's just no correlation data even.

Brittany: 00:13:10

Right.

And it's just that timing where you said, like, there might have been that regression in speech around that same time where you're getting your vaccines or noticing things are not progressing as they maybe like, typical development around that same time.

Shawna: 00:13:23

Exactly. And then the risk, of course, of this theory becoming rampant is that vaccination rates drop.

Brittany: 00:13:28

Yeah, right.

Shawna: 00:13:29

And the impact to certainly medically complex individuals and individuals that cannot get vaccines is quite severe. We've seen the measles resurface because the vaccine people haven't been getting as many vaccines.

Certainly in some areas of the states, the vaccine rates are like, the lowest they've ever been. So misinformation has a cost to it. And in this case, there's children that died now Right. From the measles. The measles have come back.

And so that's where I think we want to be really critical consumers and why it's important to talk about this topic.

Brittany: 00:14:02

Exactly.

And so, you know, sort of putting this part to close with the vaccine myth, like, it's important though that we say for this one, this wasn't just like weak science, this was fraudulent. And like there were 12 children in this one study. Right. And this is the one study that sort of everyone like goes back to almost the Wakefield study.

Right.

Shawna: 00:14:24

Like he replicated, publicated it, lied multiple times, multiple publications that he lied in.

Brittany: 00:14:28

Right.

Shawna: 00:14:29

And fabricated the data. And then he also had people that were part of the lawsuits were paying him money in the studies as well. So there's like so many conflicts.

Brittany: 00:14:41

Yeah.

Shawna: 00:14:41

And he has now come out and said, I'm pretty sure maybe I'm making that part up. I think he came out and like, I think he had to. Yeah, I think he lost his license and everything. But anyways. Because there is like a real cost here.

Brittany: 00:14:54

Exactly.

Shawna: 00:14:55

All right, the next one I want to to talk about in this one I talk about at least once a month, I feel like is gluten and casein free diets. And this one has mixed reviews.

There really isn't good research saying it's going to work, but I have certainly there is some research saying it could be good. And then anecdotally from families, I've also heard like sort of mixed results.

And then I myself, I feel like maybe Lee am a little bit more empathetic to this, the wishy washy of the evidence here because I have ulcerative colitis us and when I went through my diagnostic process, I got so much conflicting information. One doctor would say, oh, it doesn't matter what you eat.

Brittany: 00:15:36

Right.

Shawna: 00:15:36

Another doctor would say, oh, you definitely shouldn't eat gluten. And then I'd see someone else be like, oh, it doesn't matter again. And then one doctor gave me a cookbook and I was like, well, which one is it?

Like, does it matter or it doesn't anyways. And so I think from that experience, I never want to discount someone else's experience and is a little bit of a bias that I have. Right.

And so the reason that they think that this might be a good option is because of the gut brain connection, which is not my area of expertise, but is something that is like an active area of research and people are interested in within the autism space, but it is not proven. And as I said, the evidence is sort of mixed.

Some studies are showing a benefit, particularly maybe in like GI symptoms, which I would think is interesting because a lot of the younger individuals that we work with can't talk. And if they can talk, they can't. They aren't talking about like, my stomach hurts. Right.

Or like I gotta go to the bathroom or like those types of communications. And so I think you could see like a behavior impact because their stomach is no longer upset.

Brittany: 00:16:55

Exactly. Yeah. And gi. We were just talking about GI issues last night actually, you know where.

Because my daughter has experienced a lot of belly upset for a long time. So we saw her pediatrician and she was talking about the gut brain connection and how it is real and like we got to kind of figure this out.

But at the same time you may notice patterns like specifically for my kid, it was like she said you might notice patterns like going back to school, for example. Big transitions like that can make your belly more upset.

And I was thinking about some of our friends that are non vocal or non speaking and like, you know, all the things that are layered in there, like I can't tell you that I'm not feeling well or I can't tell you that my belly's upset.

Shawna: 00:17:34

And like all of us really struggle. Often when it's like because of a transition would be like probably some underlying like anxiety or stress. Right.

And then it's hard to label that, you know, so it is quite tricky. And so I have lots of families that come to me and want to try that out.

Brittany: 00:17:51

Yeah.

Shawna: 00:17:52

So what I do in those cases is I always suggest, of course, taking data and think about like what do you think this is going to do for your child?

And that way you've got some actual data, whether it's like a rating scale or something like that, or like actual data on how many words they have and how many tantrums they're having or that sort of thing. So I would collect some data and then I recommend trying it out for six months because it can take a while.

And so if you're gonna try it out, it's like, you know, you want to have like a good commitment to trying it out.

Brittany: 00:18:24

Right.

Shawna: 00:18:25

And then the other kind of caveat that I often talk with families about is often the clients that we see are restricted eaters and they don't eat a ton of food. And so I would be weary of pulling gluten and casein out if like those are some of the only foods they eat.

Brittany: 00:18:44

Yeah, exactly.

Shawna: 00:18:45

And those are their safe foods. And so especially for something that's more experimental. Right.

I would say cost, the cost one is like the cost of gluten free food is more expensive and like dairy alternatives, etc, the thought like the impacts your family life, you know, now you've got to cut these things out. Is everyone cutting it Out. Is it just this one child? And like, how are you navigating that?

Brittany: 00:19:06

Yeah, making separate meals and yeah, it's.

Shawna: 00:19:09

Like those are the costs. And if you think you can pay those costs, then I would say as a parent myself, I might try it out.

Brittany: 00:19:17

Right.

Shawna: 00:19:17

You know, there's not overly harmful.

If anything, it's actually probably like a nice healthy diet that they're eating because I've pulled out like all the, I don't know, it's thinking of like Cheez its or. Yeah, you know, they're not even those.

And so anyways, and then look at what you might be like, what are those things that you think are going to be impacted? If you do know when your child has tummy aches, are those happening less?

Or if you're looking for behavior impact or more words or following instructions better, etc. You know, take some data.

Brittany: 00:19:45

Yeah. And data could even just look like, how are their bowel movements and what does that look like?

And sleep and like, are they more irritable or less irritable? So, you know, you as the parent sort of think like, what is the, what's the driving force behind this?

Why do I think this might be helpful for my child? And then track those things.

Shawna: 00:20:02

Yeah, exactly. So I think that's like the most common question that I get asked from families is like trying out that one.

And I would say I don't see too much harm in it, but it is like as a busy family, I can't, I. I'm not living dairy and gluten free at my house. And so I give kudos to anyone that is putting in the effort to try that out.

Brittany: 00:20:20

Yeah, exactly. All right, next we want to chat about one that came up again. We mentioned this at the beginning of the episode.

More from a parent who brought this up to us and such a loving, genuinely kind mom.

And she said, I'm almost embarrassed to ask this question, but I just want to know because I saw this online and it's these speech drops and you know, like just sort of. And I said, I've never heard of this before, like, tell me more.

And I remember you and I were both in there and just like sort of dropped everything, everything we were doing. We're so intrigued by this. And so it. There's these speech drops and like, is this going to help my child speak?

And so she was a mom of an autistic child.

And like the claims online say, like, you know, just having these speech drops are gonna, you're gonna see like incredible increase in Their language skills and, like, real big promises on what is going to be delivered. And so, like, everything you and I sort of said, okay, you know what? We're gonna look into this and come back to you.

Shawna: 00:21:18

I'll say this one. I was like a meatball immediately. Skeptical.

Brittany: 00:21:21

Of course.

Shawna: 00:21:21

Yeah. Because I didn't go in with much of an open mind.

Brittany: 00:21:25

No, no.

Shawna: 00:21:25

Because there I find in the autism world, there's no shortage of these things.

Brittany: 00:21:29

Yeah.

Shawna: 00:21:30

And unfortunately, it comes from, like. Like a bad place where autism is bad and we have to sit and cure it.

You know, and so that tends to be pushing this narrative, and then they, like, grab on to the anxieties of parents late at night.

Brittany: 00:21:44

Yeah, exactly.

Shawna: 00:21:46

And so I would say these are like one of many. Anything that's on the market for curing.

Brittany: 00:21:53

Yeah, yeah. Right. And I don't. I. We, like, really don't love the language.

There's around that, you know, there's no cure, there's no drop that's gonna, like, fix them and that just like such. I don't like saying that even out loud. Right. Because there's, you know, it's not about a fix.

I looked into this one quite extensively and right back when this mom came to us, and interestingly, I found that there was some literature on nutrition and development and vitamin D that was, like, linked to language development or slower language. Um, and then low B12 in pregnancy was linked to lower language scores. So. And then iron kind of matters, too. So it was interesting to me.

And so I would obviously say, like, if you're concerned, then one of the things obviously could go to be to go to your physician and see like, if, you know, there's a cost of blood work as well. It can be very stressful and very hard on the child.

But if you were concerned, you know, you could check your children's nutritional status and see, like, are they low in vitamin D? Are they low in B12? And some of these things. But drop. A drop of vitamin D is not going to, like, fix their speech.

It's not going to replace speech therapy. You know, we know that good nutrition can help the body and the brain respond to treatment, but it's not the treatment.

So you don't, like, stop everything else and then just do these drops for sure.

Shawna: 00:23:08

Right. And then I think the other thing for that one, I think anyways. But most, again, pseudo science will have research. I'm putting that in quotation mark.

Yeah, yeah. On their website that says this works and it'll be, like, published research.

Brittany: 00:23:22

Right.

Shawna: 00:23:22

And again, if you don't like, didn't do like post secondary education for a long time and like spend a lot of time reading journal articles and that sort of thing, you would think like, oh, this is research. Yeah, yeah, yeah.

And it is research in quotation marks, but it's like not published in like real journals or it's actually like poorly designed studies that couldn't measure what they're claiming that they did measure. Right. Or like very correlational rather than causal.

Brittany: 00:23:50

And often the developer themselves are the ones conducting the research to sort of prove something. And that's sort of defeats the purpose of science. We don't like go in with like, oh, we got to prove this thing. We go in with a question.

Shawna: 00:24:00

Exactly.

Brittany: 00:24:01

So it's sort of like backwards that way. And I would say the website for this, the one that the mom sent us, was so beautiful and so compelling and so convincing.

Like I looked at it and I was like, oh, I. I maybe need these speech options. Like it was so beautiful. So there's lots of examples like that out there.

Another one that shocked me when I was looking for the just like looking up stuff for this episode was a little bit more on the speech side of things, but came up and it's a company that I will not name here, but they call it a complete apraxia program. And it's under this autism. Like it was an ad from this autism company about this complete apraxia program.

So I dug into it especially after we had Brooke on here, Brooke Ray, the speech pathologist, talking about apraxia. And it's a set of talk tools and videos. It's very expensive and it sort of promises that it'll like fix your child's autism. And apraxia.

Shawna: 00:24:57

It's like a package that I bought.

Brittany: 00:24:59

Yeah, yeah, exactly. And it has like tubes in it like you something you might see in a sensory bin, let's say like for playing with rice and stuff.

Like these colored tubes and looks like magnetiles almost. Okay. Some of our kids favorite toys, but not for like helping with speech.

And so there's no evidence that non speech oral motor exercises improve speech in childhood.

Shawna: 00:25:19

Apraxia speech or I think mostly in general. Right. I actually remember that Brittany and I had the same mentor and she's a speech pathologist and a behaviorist.

And one of the things that I used to do and, or that I used to do when I was a direct therapist and the person supervising me we did was we would work on oral motor imitation to try to get them Talking. Right. And then the speech with all. Yeah, that's. There's no research behind that. And like, that's like.

There's like, way faster ways to get there if you're gonna get there than doing this.

Brittany: 00:25:53

Right. The blowing and popping and like.

Shawna: 00:25:55

And so again, it's like this family's paying a lot for therapy.

Brittany: 00:25:58

Yeah, yeah, exactly.

Shawna: 00:25:59

And so the cost of me wasting time working on blowing and puck.

Brittany: 00:26:03

Right.

Shawna: 00:26:03

Which, like, could be a very useful therapy task. I'm not saying never to do that. Right. But not with the aim of them talking.

Brittany: 00:26:08

Right, exactly. And so anyway. Yeah, no, exactly. And so a case like this, like, I just was shocked that it's like, labeled autism apraxia, like kind of fix.

It's so dangerous, you know, to have that as a promoted ad on something like Facebook, you know, because we know that the core deficit of CIS is like, motor planning and programming the speech movements. And so, like, magnetic. A child. In a child's mouth aren't going to fix that.

And so, yeah, it was just like so many years of research showing it time and time again that there's no evidence for this. And then yet there's like a very compelling ad and program.

And it looks like you just, like, have it shipped to your door, you know, for this complete program. It's just wild to me.

Shawna: 00:26:50

Talk tools.

Brittany: 00:26:52

Yes.

Shawna: 00:26:52

Is that in my mind, I'm like a brand of, you know, sometimes in speech pathology. Aren't you guys, like, moving people's mouths or something?

Brittany: 00:27:00

Yes.

Shawna: 00:27:01

Talk tools still exist.

Brittany: 00:27:02

Okay.

Shawna: 00:27:02

And are those tools, like, is that legit?

Brittany: 00:27:07

Good question. And I will say, like, I don't. I haven't looked into talk tools specifically.

Shawna: 00:27:11

Recently, but it's separate from this apraxia package.

Brittany: 00:27:14

Yeah. You're talking about the talk tools doesn't promote that epoxy package that I was talking about.

They Talk tools does have some, like, OT feeding type tools. And then they do have some other things like bite tubes and horns. Horns and stuff.

I would say, again, like, we got to think about what's the purpose of it. So if you're, you know, talk tools in themselves, they might have some good things for feeding or exploration or sensory stuff.

But if you're going at it from, like, trying to use a. One of their talk tool things to like, cure apraxia, for example.

Shawna: 00:27:46

Right.

Brittany: 00:27:46

That's, like, not good.

Shawna: 00:27:47

Yeah, so that's what I would say.

Brittany: 00:27:48

About that without, like, having looked into it recently again. But yeah, so interesting. So there's still lots of stuff out there. And this one Was specific to speech that I wanted to mention. Dimension, right?

Shawna: 00:27:58

Yeah, very interesting. I don't know a lot about it, but the last one that we're going to chat about is you say it. Lucavorin is quite trendy right now.

And one that I would say again, I came in quite skeptical, which is not the best way to approach a new treatment.

But like I said, live in the working in the autism world for so many years, I just seen so many things come up and then people are making like large claims about this, like their kids are suddenly speaking in sentences and. And following instructions and maladaptive behavior has decreased.

And so what I did first for this one, because it's a newer one for brand new to me, I joined a bunch of Facebook groups about this topic and just sort of sat as a fly on the wall reading parent reports and then seeing the people who would respond, like doctors, et cetera, that were responding. And that's why I started my research for research. I put that in quotation.

That's not real research on social media, but I just wanted to see, like, what are people saying that it does and what are the doctors sort of replying with?

Brittany: 00:28:56

Because these are the questions parents are going to say to us. I want to know what they're generally consuming. Right. We do this often with all kinds of topics.

Shawna: 00:29:03

Yeah.

And so it was really interesting and lots of people were what I would say or lots of people were giving good responses, you know, like, don't expect change overnight. Don't expect your child to start saying a hundred new words, you know.

But what I'm noticing is like subtle changes in my child where they are calmer, they are listening more, that sort of thing. And so then I went into the literature and did a literature review of what's out there.

And surprisingly there is like it does some like positive potential. Certainly not proven yet, but some positive potential potential.

And then again here if we're doing like risk analysis, you know, not for most, probably not super risky to try it out and see. Obviously this is a doctor's decision, not mine. And so it has something to do particularly with children with folate deficiencies, I think.

Brittany: 00:29:59

Yes, I think so.

Shawna: 00:29:59

And ties in something with folate and then leucavorin. Yeah, I think so. Is one of the things that they'll look at are like there's like different types of folate.

I understand now from like reviewing the research. And so it has to be this certain type in order for it to like actually feed the deficit.

And so anyways, there is Some promising ideas for it or promising research coming out, seeing improvements in expressive language, communication, medication, like I said that maladaptive behavior like irritability. But the studies are small for the most part. They're kind of done by one kind of group I think is what I've seen as well.

And that's another thing we actually haven't talked about when we're looking at pseudoscience or like any sort of claims out there. If there is literature, is it the same people? Yeah, that's publishing it all the time. Yeah.

Brittany: 00:30:48

Or like the person who sort of in this case isn't really like a person who could have developed it. But in the case of like them there's some speech examples where like the product developer is the one that. Yeah, you know, like had the evidence.

Shawna: 00:30:58

And like sometimes you have to do that because you need to prove your product works, but other people should replicate your findings.

Brittany: 00:31:06

Right.

Shawna: 00:31:06

And so anyways, in this case I do think it's kind of like a small group that are doing it, small studies, fairly new research sort of coming out. And so I don't think we have the answers yet. There's some hypothesis on who benefits and what kind of testing might be appropriate for that.

So that's certainly something that you could talk to your doctor about. But they don't really know like what dose is best, I don't think. And then how long, what are the long term impacts of this?

And then the thing that we want to be conscious of is that someone's gonna see this right. As their golden ticket.

And so just like those draws, someone is gonna brand this and then sell it at a huge markup where it potentially just a vitamin, you know, that you're getting prescribed by your dog.

Brittany: 00:31:52

Well, I don't know.

Shawna: 00:31:53

Also doctor prescriptions also make money. So I'm not trying to out.

Brittany: 00:31:57

Right.

Shawna: 00:31:58

And so those are kind of the things we want to be watching for. And so I'm interested, I, I have a couple families at the clinic I know that are trying it out.

And interestingly, even in like a two month period, I had families say like two months prior that could not get a prescription, their doctor was not prescribing it two months later. Almost every family, their doctor's happy to prescribe it now and try it out. So I do think it's sort of like evolving.

And so I'm interested to keep following it.

I think like I said from a risk benefit analysis, other than like I would talk to your doctor, but if your doctor says like it's safe for you, it seems like something that could be worth trying. But I would also say similarly to the gluten casein diet is like, take that data, you know, what are you expecting to see from this?

Brittany: 00:32:44

Exactly, exactly. And again, it's not about a fix.

And so we're not looking for like a fix of any sort of like, we're not trying to cure autism by having leukovorin or the drops or whatever. You know, it's like so much more than. That's such an important message. Sorry is like the.

We're trying to do the best for our child and help them and support them and their growth, but not like, fix them.

Shawna: 00:33:06

Yeah, yeah. And I think the one thing that we were hoping to give listeners today is some tools in your pocket.

So I myself, and I know Brittany as well, I'm guilty of some late night scrolling and then coming across something. And certainly when I was like, early in parenting, I was googling a lot of things for children and have. Have a funny story about Levi.

My oldest, Britney had given us all of her hand me down baby stuff. And one of them was this sleep swaddle thing that had like a little weight on top of it. And like the first night he slept through the night was.

He was wearing that or mustn't have been that because they have to be three months. But anyways, he slept through the night like really well and must have not been sleeping well before that.

Brittany: 00:33:44

Yeah, yeah, that.

Shawna: 00:33:45

He wore that like every single night to sleep for the next two weeks. I was like, I don't know. This is just what did it. This is what works.

And like, as a behavior analyst, I know that's not true in that moment though, like, you could not convince me otherwise. And like, heaven forbid, like, something happened to that. My, my husband had to wash it right away. So we have it for the next nap.

Brittany: 00:34:01

Exactly.

Shawna: 00:34:02

And so hopefully we can give you some tools that you can think about when you're seeing new claims, whether it be for new face creams, sleeping strategies, or something for your child.

Brittany: 00:34:29

All right, so I was curious.

You know, we've talked about this lots in our clinical conversations, but let's talk about the framework that you use, because in preparation, in preparing for this episode, I found a, I don't know, similar something in the speech world, but you have a sort of tried and true method, like a framework that you use from a paper. Right. That you love.

And so I wanted to sort of dive into that next, like, how do we evaluate a claim without sort of being dismissive and so what are the steps that someone sort of should follow?

Shawna: 00:34:59

Yeah, exactly. So the. I'll put the article in the show notes, but it's a Matthew Brodhead article.

I have read it 100 times, and I use it all the time with new staff. So the first question is like, is it safe? Right?

And so that's kind of the first thing to rule out is like, if it's not safe, it doesn't matter about the rest of the staff. And so the first thing I want to rule out, is there, like, physical harm? How about psychological harm? Or does it block access to something?

And so the safety piece could be missing out on something that, you know, works. Right. So that's sort of the first thing that we want to evaluate is like, is this a safe thing for the child?

And then the next thing that we'll look at is what is it saying that it's gonna do and can do? I clearly understand that because again, sometimes I'm trying to think of an example for my own life.

But like, with skin care, for example, like, the influencer is so convincing talking about it. And I'm like, I gotta have that. Yeah, but it's like solving acne. I do not have acne.

Brittany: 00:36:03

Right.

Shawna: 00:36:03

I do not need to buy this. But in my, like, late night, I'm like, oh, God, I better. Yeah, get this thing so convincing. Yeah, yeah, yeah.

And so what is it actually trying resolve. And is that useful? You know, is that something? And then how would I try? How would I know if this is working? Right?

And so as a clinician, the next thing I might look at is like, am I familiar with this treatment? Do I know it already? Have I heard about it? Do I have any background knowledge? You know?

And like, those speech drops that you were talking about, I've never seen those specific ones, but I've seen other sort of things that claim that, and they've all been pseudo science. And so once I've. So then as soon as I saw them, I was kind of like, ah, probably not real, but, you know, so I want to.

At least part of this as a clinician, is to acknowledge your own bias and know what kind of bias you might have going into evaluating these claims.

And then in the Broadhead article, they do say to go back and reassess the safety of the individual and make sure that you haven't overlooked anything. Now that you've kind of familiarized yourself with the treatment, is there any other risks that maybe you didn't know ahead of time?

Next is treatment success Possible if you, in my case, translate it into behavior. Behavior science.

And so that's something that we'll often do is if someone is suggesting something, if it makes sense, like if, obviously if it's talking about, like, vitamin D and stuff, I don't need to. That's just like real science, but convert it into some sort of scientific methodology.

And so an example would be, we didn't talk about this in this episode, but I could talk about it for a long time. Like, sensory integration therapy is something that's quite popular in the autism space.

And so if I look at that therapy approach, can I make it behavioral? Can I understand the mechanisms of change here? And if I can, great. Check. Keep going.

If I can't, then I'm going to keep going down the literature, probably, and see if I can find out some more information about this thing.

Brittany: 00:37:54

And to pause you there, this is something that you and I have talked about clinically a lot across different things.

Like, even for aphasia, some of our stroke patients and autism, like, when I present to you, oh, this is something that we commonly use from the speech pathology literature. You'll use the same framework to say, like, can I interpret it from a behavioral lens?

And so can I. I'm not saying, you know, and you always say, like, well, the language might be different or like, the way that present. It may be different. And that's fine. Like memory strategy for aphasia. I remember we talked about that.

You're like, well, what's sort of the underlying principle? And can I reinterpret that from a behavior analytic perspective? And then yes, and if I say yes, then great, let's keep moving.

And it doesn't matter that your. My language around it is different than your language around it. We can both, like, come together.

And I think that sort of highlights, like, how our collaboration works a lot of the time too. It's like we're just trying to constantly, like, reinterpret the other's perspective or literature or, like, the way that it's.

The way that it's said.

Shawna: 00:38:49

Right, Exactly. I was actually just reading a interview yesterday with Chomsky.

Brittany: 00:38:54

Yeah, yeah.

Shawna: 00:38:55

That I was telling about. It's one of my favorite things. Can also put in the show notes for my other nerds, but it's like a linguistic versus behaviorism debate.

And it's very interesting.

But one of the things that it was talking about is, like, there's natural sciences which follow, like, scientific principles, and you can have causal, like, you can turn them on and off. They follow Rigorous steps. Steps. And then there's social sciences, and a lot of what the.

Like, social workers, of course, that's what they study, is social sciences. And so the language is different. Right. And what we study sometimes is different even in those two domains.

And so if you can, your wording might be different. But if I can convert this over into my wording or I can boil it down to the parts that really matter for me as a behavior analyst, then I know.

Brittany: 00:39:40

Right.

Shawna: 00:39:40

Whether to go for forward.

Brittany: 00:39:41

Yeah.

Shawna: 00:39:42

So I would do that, see if I can reinterpret it. And I think if you're a newer clinician, this is something that is really worth spending your time doing.

It makes you a stronger clinician across the board, being able to reinterpret things. And I will say, like, sometimes AI can be really helpful with that too.

If you're really struggling with something like, hm, can you make this into ABA terms for me?

Brittany: 00:40:02

Interesting.

Shawna: 00:40:03

Yeah. And sometimes it can do a good job of that or at least get me on a new path that I maybe hadn't thought of before. So that is one good use of AI. Okay.

So after I've sort of identified, like, okay, yeah, I like this treatment. I see. Like, theoretically, it makes sense to. That this would be effective.

Brittany: 00:40:19

It's safe.

Shawna: 00:40:20

Next thing I would look at is, does this interfere with the goals of the client in any way? So if I'm doing.

If I choose to do this thing, like take these speech drops, for example, they wouldn't get this far in my checklist, but in someone else's, they might, you know.

Brittany: 00:40:33

Yeah.

Shawna: 00:40:35

Is there any interference? You know, and if they're like 500amonth for these speech things. Right.

Then they would have to pull back, maybe on ABA therapy, then that would be a time that I might say.

Brittany: 00:40:45

To the family, hey, I don't actually.

Shawna: 00:40:46

Really think this is a good use of your funds.

Brittany: 00:40:48

Right, right.

Shawna: 00:40:49

And then so I. Those are sort of usually the steps that we would go through. And if I hit a snag somewhere along the way, then I would talk to the family about it.

But if I don't hit a snag along the way, then I'm like, okay, we can try it out. Let's do it. You know?

Brittany: 00:41:04

Right.

Shawna: 00:41:05

And then as a parent, obviously, I'm not as structured as that when I'm looking at, like, things for my kids, but sort of like, what does it say it's supposed to do? How would I know if this works right now? I am trying. What do you call that? It's Like a hair serum, a hair growth serum.

After my children and my hair never came back. And so I've been trying out this hair. I tried out like some other ones over the years, but I've been stuck on this one now for a year and a half.

I've been using it and I have so much, I think, like, so much new growth. Like you can see in certain areas that I'm now. Now I feel good to tell other people that it works.

Brittany: 00:41:39

Yeah.

Shawna: 00:41:39

Because so in this case, it's did it would help my hair grow. Yeah. How do I know that it works? I have new hair growth.

Brittany: 00:41:45

Right.

Shawna: 00:41:46

And then in this case, like, I would think about, like, do I have to give something up to try this? Right. As well. And for my kids, like, I've only got so much money, so yeah. Gotta make it work. And then with my hair, am I giving something up?

Not really. It's not very expensive, so it was fine.

And then the other thing, actually that we haven't talked about either with pseudoscience typic claims is that they're often overstate.

Brittany: 00:42:08

Oh, yes.

Shawna: 00:42:08

You know, like those speech drops you're going to be talking.

Brittany: 00:42:10

Yes.

Shawna: 00:42:11

I think. Did I. It also like reduced stuttering or something by like 90 or something like these outrageous claims.

Brittany: 00:42:19

Exactly.

Shawna: 00:42:20

And that then you feel like, well, I have to do it. If I don't do it, I'm going to be missing out. Right.

Brittany: 00:42:23

And it's like running on that, like panic and. Or shame or like something like this urgency that, like, I have to get this tonight. And it's usually like. Or it's going to sell out or.

Or there's something like really catastrophic is going to happen.

Shawna: 00:42:35

There's a special deal today if you buy it. Yeah, yeah.

Brittany: 00:42:37

99 Off today. Yeah, exactly. And so like, real ethical treatment doesn't run on that. Like panic.

You know, like, we usually say this too, like when we're onboarding a new client, like, we want to get you in so that we can like, obviously start helping you. But it's not a panic where we have to like, drop everything and get you in this afternoon and like, you know, stop recording the podcast. Exactly.

Like, it's not about panic. It's like taking it in the time that it should and like getting you onboarded.

I don't know if that's like a right example, but yeah, it's like just not about panicking.

Shawna: 00:43:07

Yeah, exactly. And like, you'll see these testimonials that make you think, like, I gotta do it.

Brittany: 00:43:11

Yeah, yeah, yeah. Y.

Shawna: 00:43:12

Right. But they are just testimonials. You don't even know if they're real people. The influencers are paid to do this.

Narrator: 00:43:17

Right.

Shawna: 00:43:17

And then we didn't talk about.

But all of the ones that we've talked about today, all of the treatments that we've looked into, not the lucor that was, but the other ones all have celebrity endorsements.

Brittany: 00:43:29

Yeah, right.

Shawna: 00:43:30

Like the, even the vaccine one. Oh, what was her name? Jenny McCarthy.

Brittany: 00:43:35

McCarthy, yeah.

Shawna: 00:43:36

Came out as like a big push for that, you know. And she's actually come out now and is remorseful for how vocal she was about it.

Cuz she has a, a child that's neurod divergent and so she's actually come out saying like I'm sorry like I shouldn't, I wasn't an expert and I shouldn't have like endorsed these things.

Brittany: 00:43:53

Oh, interesting.

Shawna: 00:43:54

But anyway, so I think just something to be like weary of.

Brittany: 00:43:57

There's one in the speech world called, I think it's Speech Easy. I was going to talk about it but it's not as related to autism.

It's more about stuttering and it's like a little device that you would wear in your ear and they had these like massive claims again like just wild like 81% reduction in stuttering and it was like promoted on Oprah and all of these. But then like there's no research to support it and then again it's like this whole thing that we can like cure or fix stuttering for example.

And like there's just so many problems with that, all of that. And so yeah, it's the same sort of thing where it's like all about this like panic like you ought to get it today and get this like sort of device.

And then the celebrity promotion of it was like so widely promoted. Yeah, so that's another sort of pseudo.

Shawna: 00:44:39

Science in the speech world.

Brittany: 00:44:41

Yeah, exactly.

Shawna: 00:44:41

These wild claims with very little to back it up, you know. And like if talking was that easy to just take some drops. Yeah, I think you know doing it more.

Brittany: 00:44:51

Yeah, exactly.

Shawna: 00:44:52

But they're like science does change and things do change.

And so if you do decide to try out something new for your child or yourself, what we recommend is just do one, like do one change at a time and ride that out for however long that that change takes to take effect, you know.

Brittany: 00:45:10

Yeah. So you're not going to try the gluten free diet plus the speech drops plus the weighted vest plus whatever because then you really don't know.

Sort of like what's Working or where the change is happening.

Shawna: 00:45:21

Exactly. And I think sometimes what will happen to us in the clinic is a family will get a diagnosis, right. And then they're starting therapy.

They want to start the gluten casein free diet. They're going to start some drops. Right. Everything all at once. And we actually recommend not doing doing that.

Our recommendation, of course, would be to start direct services because it has the best research at this point and then helping them sort of along the way to decide when is a good time to try it out and how are we going to evaluate it. And then at the clinic level, we'll also take data to evaluate it.

And I do think that's also an important thing for anyone with neurodivergent children that's exploring medication as well. That would be a good future episode is tracking.

Brittany: 00:46:02

Right.

Shawna: 00:46:02

What do you expect this medication to do? Is it doing that thing that it's supposed to do? Same way that we evaluate these pseudoscientific claims as well.

Brittany: 00:46:09

I can remember a family that we had at the clinic and they did start a medication that was not like, sorry, I shouldn't even call it medication. They tried some sort of like drop type thing at the same time that they started therapy. And I remember the mom was so.

Shawna: 00:46:21

Excited and she was like, the drops are working.

Brittany: 00:46:23

And you said to me, you were.

Shawna: 00:46:24

Like, oh, it can't be the therapy. Exactly. So hard.

Brittany: 00:46:29

I was like, okay.

Shawna: 00:46:30

Those things started at the same time.

Brittany: 00:46:31

We're like doing like such cool work, you know, and like.

Shawna: 00:46:34

And that's kind of the tricky thing with a lot of these emerging things or pseudo scientific claims. Right. Is that some of it is just developmental. Like they were going to do this thing anyways. Oh, right. You know, like maturation effects.

Like they were going to start saying more words regardless. We don't. And I sort of feel that way about my hair serum. Oh, yeah, right. Is like my hair probably would have grown back at some point, I hope.

Brittany: 00:46:56

Right.

Shawna: 00:46:57

But would it have grown back faster or slow? Like I don't have a crystal ball.

Brittany: 00:47:00

I don't know.

Shawna: 00:47:02

And so I do think there's some ways that we just like, can't know.

Brittany: 00:47:04

Yeah.

Shawna: 00:47:05

So anyways, take that for what it is.

Brittany: 00:47:07

No, yeah, yeah, yeah, exactly, exactly. And so, yeah, like, think about. And when you're really evaluating it, like the red flags or the things that would sort of.

We would recommend taking a pause would be that promise for a cure or like, oh, it just like worked so well for this autistic child. So it must work. For this autistic child, like that would be such an overgeneralization.

And then again we talked about this obviously, but like using that fear or urgency and then the celebrity kind of promotion, a lot of them have like testimonials as their heaviest thing and it can be so compelling. You know, it worked for my child and like five star rating and all these things.

But if it's heavily on the testimonials and not the real research, then that's something to look, look at carefully.

Shawna: 00:47:50

Exactly. So some of the places that we like to look. The association for Science and Autism Treatment is a very good website. They keep it fairly up to date.

Brittany: 00:48:00

We call it asat. Kind of colloquial. Quilly. Yeah, this is one I remember my. Our shared mentor shared with me and.

Shawna: 00:48:06

I was like, oh my gosh, this is actually amazing.

Brittany: 00:48:09

Like what I love about it, it is so parent friendly and professional friendly and so to go to asat, you don't have to have a master's degree in behavior analysis to understand like how to interpret it or speech pathology. It's written so clearly and it'll say like if the evidence is high or low or maybe not enough yet.

And then it breaks it down like what the evidence evidence is. And it has sort of every category like for professionals and for parents and then where's the evidence?

And then like a lay terms of sort of where the evidence is at. I love it.

Shawna: 00:48:38

Yes, I love that one too. And then the other thing that we recommend is using Google Scholar. It sounds scary. It's not where you can put in a systematic review.

So it'll pull like all, not all, but a bunch of articles about that topic and then dive into whether there's good research or not. So systematic review or meta analysis is another one. Um, and so I find that one can be a good option as well just to like quickly read the.

Like you don't need to read the whole article. Usually the abstract is enough.

Brittany: 00:49:08

Right.

Shawna: 00:49:09

To tell you whether like you should keep going down this path or not.

Brittany: 00:49:11

Right.

Shawna: 00:49:11

Um, and then the other one I was going to shout out is Informed slp.

Brittany: 00:49:16

Is that what it's called? Yeah, the Informed slp. I love that one too. They've got some really great digestible things. It's like geared more for professionals I would say.

But there you can. They've got a search on there and they are constantly evaluating the evidence and claims and so you're right. That's a awesome one too.

Shawna: 00:49:32

Yeah. For clinicians, for sure. Parents, I think a lot of the articles like parents could read as well, component to it.

But I would encourage my fellow behavior analysts to not shy away from the informed slp. Yes, a really great way to flex your muscles because they're doing critical evaluations of research using an SLP lens.

And so then you can take that and reinterpret it using behavior analysis. So really good exercise. And definitely recommend.

Brittany: 00:49:59

Yeah. And then always bring your questions back to your clinical team, whether that's your physician or your family doctor.

Doctor, pediatrician, behavior analyst, speech pathologist, you know, because it's great to ask those questions.

And then usually if you're going to, like, when parents come to us, they know that they might not be the first person that's ever asked us that question. Yeah. Or if not, then we're like, oh, hey, I'm actually so interested in helping you through this.

Not to say that we always have the answer right away. Often we're like, well, actually, let's take a step back and I'm going to look at the evidence. But bringing it back to your team is so important.

So don't ever be embarrassed that you're curious about something. Don't ever be embarrassed to bring a question again.

Again, we were saying, like, it's, it can be so compelling and like, look so convincing that it's sometimes important to not click by an Instagram at 11 o' clock night. You see something like that, the urgency factor, remember again.

But instead take a screenshot, bring it into a professional and just say, hey, is this something that we should be talking about or looking at?

Shawna: 00:50:53

Exactly.

And so today we hope that we sort of convey this idea that you don't have to always know the answer about these new products, but having a good process for evaluating them is certainly helpful. As a clinician, if you're a parent, don't be afraid to ask those questions.

And like, I would say Britney and myself at least, like, genuinely enjoy having those conversations. You know, I'm like, oh, I would never have come across this.

Brittany: 00:51:13

Exactly.

Shawna: 00:51:14

Cool. Thanks for showing me. And then of course, you're not going to be the last family to ask me about this. So thanks for bringing it to my attention.

Brittany: 00:51:21

For sure.

Shawna: 00:51:22

And so hopefully we've given you some tools to kind of evaluate some of those claims that we're seeing online, whether it's for your kids or your own skincare or hair growth. Yeah, right.

Brittany: 00:51:30

We're here for all of it.

Shawna: 00:51:33

Exactly.

Brittany: 00:51:33

Because as clinicians, we're like, we always say we're moms as well. Like, we want parents to feel heard. We want their kids to have these approaches that are rooted in evidence.

And we have so much genuine respect for the families that we serve that, you know, we just want you to have, like, the best tools in your toolkit to help support your child and whatever that looks like.

Shawna: 00:51:51

Thanks for joining us.

Brittany: 00:51:52

Thanks so much for listening, everyone. If you have any questions, please send.

Shawna: 00:51:56

Them in to us.

Brittany: 00:51:57

You can send us a DM or email us at infoeurodiverselyspeaking.com if you've got questions about a scientific or pseudo scientific claim, we'd love to hear from you. And of course, if you got an idea for another episode, please just shout us out.

Shawna: 00:52:12

Thank you.

Brittany: 00:52:13

Before we go, we want to remind our listeners that topics we discuss in the podcast are not a replacement for professional medical advice. Please contact a professional if you have questions.

Shawna: 00:52:22

And just a heads up, we'll use both identity first and person first language to respect different preferences. We'll also say treatment and therapy since we come from a clinical space, but also always with respect and a focus on what works for each person.

Brittany: 00:52:35

See you next time.

Shawna: 00:52:36

Bye.