219: Weeding Out Misinformation, with The Behavior Revolution

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hosted by Penny Williams

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There is a LOT online about ADHD and autism. A LOT! How do you know what to trust, what to try? It can be tough, especially when you’re searching through a lens of fear and worry for your child.  In this episode of Beautifully Complex, we offer some guidelines on knowing what to trust and considering what interventions are worth trying. We talk about ADHD medication, diet, brain training, and more.


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My Guest

We’re Penny and Sarah, parenting coaches who help neurodiverse families like yours understand your child’s neurology and behavior, and shift your parenting to help your child thrive — without the frustration of trying to figure it out on your own. We’re also moms of boys with ADHD and/or autism, so we get it. We live it, too.



Sarah Wayland 0:03

The first five things you try may not work. But then the sixth one might be the magic thing. And you know, kids and parents can lose faith that it's actually going to help because they've tried all these things, and they've had bad side effects or whatever. And so it makes it harder for them to continue.

Penny Williams 0:21

Welcome to the beautifully complex podcast, where I share insights and strategies on parenting neurodivergent kids straight from the trenches. I'm your host, Penny Williams. I'm a parenting coach, author and mindset mama, honored to guide you on the journey of raising your a typical kid. Let's get started. Welcome back to the beautifully complex podcast, I am happy again to have Sarah Wayland here with me. And we're doing another behavior revolution episode. And I really wanted to talk to you guys today about misinformation. There's so much misinformation out there about ADHD and autism. And we really struggle with knowing what to believe what not to believe.

And I see it so much in our online communities, that parents aren't sure what to do when and what information they can really act on and what information they probably should just skip over and move on. And so I think that's really important to maybe talk about some of that, because Sarah and I both have fenit, and a lot of that information over the course of many years raising kids with ADHD and autism. And so we can sort of interject some wisdom here. And I think the amounts of weight that we should give to different information that we get, like, where we get it from who we get it from, you know, how likely is it to work for my kid, that sort of thing. I think it's really important for parents and caregivers to understand because it is so overwhelming, so overwhelming.

Sarah Wayland 1:54

It's overwhelming. And it's hard to know which sources to trust. You know, like everybody says, Oh, my way is the good way. And it's hard to know, when that actually is meaningful. You know, it's just hard to know.

Penny Williams 2:10

And I think that people have gotten really good at, you know, faking, that there's science behind something faking, that lots of people are saying it's the best thing ever, you know, that, that they're making their website look like? It's something that's wildly successful, and backed by research, when it isn't always the case, to that full extent. Right? And so just being able to know how to sort of vet the information, even that's there. Once you say, Okay, well, this looks like it's profoundly effective for a lot of people, you probably need to go a step further right to even decide if that's true, which is a lot of work. We're asking people to do a lot of work, we are or the world's asking us to do a lot of work. Right. And, you know, if we're not trained in some discipline, which, you know, why would we be trained in these things? Right, then it's very hard to evaluate, you know.

Sarah Wayland 3:06

I'll use you as an example. Right? You know, you're really good at communications and things like that, like, why would you know about psychiatric medication?

Penny Williams 3:15

Yeah, exactly. And we were talking a little bit about this before we started recording. There's so much nuance around just ADHD medications alone, that a lot of physicians, even psychiatrists don't know. And what are parents supposed to do with that? Right? Like, where are you going to learn it for you and I, we got online, right? We read things, we figured things out, we eventually found information that was more detailed and more helpful than kind of the general basics. And it's just sort of mind blowing to me that this is total reality. You know, my kid started ADHD medication almost 15 years ago when he was diagnosed and, and it was that way then, but it still seems to be almost the same way.

Now it doesn't. There's more medications now to try to weed through. And we do have an episode very early on in the private first year of the podcast, talking about just some basics of ADHD medication for things that no one really told me. And were really, really helpful such as there's two types of stimulant medication, methylphenidate based, amphetamine based one or the other works for most people, but almost no one has success with both types in the same individual. So hello, that's really good information to have when you're trialing ADHD medication, right. And yet, so many, even prescribing physicians don't have that level of detailed knowledge.

Sarah Wayland 4:49

Well, and there's also the delivery mechanism, right. So when you said that I was like, Yeah, but then there's extended release and sustained release and then there's Concerta and then there's You know, quill avant, and you know, like you have all these different delivery mechanisms, you've got the patch, you know, and but if the patch is delivering, you know, an Adderall type drug, you know, as opposed to a Ritalin type drugs, then you know, you're going to have different responses. And so people know the brand name or they know the delivery mechanism. But they may not understand that it's those two fundamental, you know, molecules that are different. And then there are different delivery systems. So you could even have somebody who maybe doesn't respond great to one form of methylphenidate, but they respond really well to another delivery mechanism for methylphenidate.

Penny Williams 5:41

Right? Or another formulation. Right, right. Right talk all the time about the fact that like, we have four or five, six, I don't even know how many there are now, different forms of methylphenidate, for instance, different brands and stuff. And every one of them is somehow different, or they wouldn't all exist, right? So yes, they're all the same type. They're all methylphenidate based, but they're still different, even if two short acting in the same category can be different, correct different additives, right in the medications, all sorts of different things, different absorption profiles, yeah. And then there's the different time release mechanisms. Conservatives mechanism is only in concern. It's very different from you know, the way a time release works on another medication. And for some people, even that makes a big difference. Because some are more smooth, some are giving more bursts. And people do better with different things. And I'll link up that episode in the show notes so that people can go back and get the full detail there. Because there's more even about it than we're going to touch on right now.

But it's just so helpful for parents and caregivers to understand how things work to understand the detail of something like a medication that isn't just prescribed based on age or weight, right? It's totally different for every person. And you've really got to understand all of those nuances in order to be able to be as effective as you can in helping your kid through trialing and finding the right medication and dosage. Well, and that thing you just said trialing it right. Like, you know, you can't look at somebody and know what they will need. Right. So the first five things you try may not work. But then the sixth one might be the magic thing. And you know, kids and parents can lose faith that it's actually going to help because they've tried all these things, and they've had bad side effects or whatever. And so it makes it harder for them to continue. Yeah. And I think especially in teens and young adults, they tend to want to give up earlier, yeah, less trust that it's gonna work out maybe just wanting to take control for themselves, too.

But, you know, I think what we're talking about here is really fear based decision making. A lot of times like, there's so many parents, especially when you have a new diagnosis that are like, I'm not giving my kid medication, I'm not giving my kid medication. And what I found most helpful in that really, is to actually understand it fully. Because there's so much misinformation about specifically ADHD medication out there, you're doping your kid, you're dragging them into submission, right? It's not that it's actually the opposite of that you're providing stimulation to calm them down, which makes no common sense whatsoever, unless you're a neuroscientist, but that's the truth of the matter, right. And so, you're not just trying to drug your child to a point that they're going to comply. That's not the point of it at all. It's just to fill in the gaps so that they're able to focus to be calm sometimes to, you know, maybe think about a decision and consider it before acting things like that, right. And so I think so often we, we immediately just fall into that pit of fear as a parent. And we have to sort of take a step back and say, Okay, well, this is the time where I really need to get a lot of information about a lot of things. And now you're like, oh my gosh, there's so much and I think that overwhelm and not knowing what to trust, creates more fear. It's paralyzing for a lot of families.

Sarah Wayland 9:29

Well, and you get messaging from society writ large about medicating your child. And it doesn't make it easy to make a good decision or to trust what your doctors are telling you. You know, what I often say is people used to be that way about, you know, wearing glasses, right? They were like, if you can't see I'm taking my glasses off here. But you know, I would never say to somebody, Oh, you shouldn't wear your glasses because you know That isn't necessary, right? We wouldn't say that now. But, you know, before people had glasses, they didn't even know that that was a difference people could have. It's a physical correction that you need in order to be able to function in the world. If I'm not wearing my glasses, I can't read. Right? Yeah. Is that an unfair advantage? Is that a, you know, something I'm doing to make myself somehow less natural? Yeah, I'm less natural with my glasses, I suppose. But it makes me functional in the world.

Penny Williams 10:34

It's a quality of life issue. Yeah, that's a quality of life issue. And I see parents all the time saying, or, you know, they're, they're fighting with grandparents or other family members who were saying, you know, your kid did okay. Before that? Or you'll get through it, they'll get through it, they'll learn? Or why does it have to be that hard? Why can't they have a little help? Because they need it. You know, there's so many arguments there that I just don't get, I can't wrap my brain around. But part of that is because I'm very educated on this now, right? So I don't always remember what it's like to really not know anything, and be trying to figure out what in the world I should be paying attention to. And I think, you know, we can sort of branch out into non stimulants, alternative treatments, that sort of thing.

Because there's so much of that. And I think that's often where we really struggle with knowing the reliability of something isn't legitimate isn't actually shown to be effective. How much of the population is it effective for? I think a lot about diet changes when we have these discussions. And you know, there are a lot of people who say, Oh, you can change adhd with your diet. And for some people, that may be true, but it's true because they have dietary sensitivities, not the ADHD, or allergies, right. It's something else that's going on. And yes, we see it more in that population. We see it more in kids with ADHD or autism, they do have more food sensitivities, they do have more allergies, they have more medication and supplements, sensitivities, skin sensitivities, like all of that they're just a lot of times more sensitive creatures. So yes, some of those changes can help. But you're not actually helping the ADHD, you might be reducing things that felt like they were part of the ADHD, you know, the hyperactivity may come down some, but it's because you addressed a sensitivity or an allergy, not because changing your diet changes ADHD.

Sarah Wayland 12:39

That makes sense. It's super important. And I was actually listening to a podcast that my sister introduced me to, that was really amazing. And I'm gonna look it up because it was about nutrition. It's called maintenance phase. And the issue that one of the episodes was about was sugar, and the impact of sugar on ADHD symptoms they were addressing, you know, nutrition, and those arguments. And, you know, there's this whole idea that sugar or chocolate, you know, makes kids with ADHD worse. And what the research has found is that it's actually the situation that makes it worse. So the kids are going into a situation where it's exciting.

And you know, there are a lot of other kids around and I don't know you're climbing on a bouncy house or whatever. Like there's, there's exciting things going on. And so yes, you are a little more hyper, or you're getting to see people you haven't seen in a while. And so kids are more hyper and all that. And that's what's making them more active in situations where they're eating sugary things. And it's not in fact, the sugar itself. They had some really interesting studies in this episode, they talked about mice who were given sugar water versus cocaine laced water and looking at whether sugar has addictive properties in the same way that you know, cocaine does. And what they found is a that the mice stopped giving themselves the cocaine.

Penny Williams 14:08

At some point we need to know how they did that.

Sarah Wayland 14:12

Yeah, well, you know, they just stopped you know, getting the water with it.

Penny Williams 14:15

I thought you meant that they actually stopped drinking the water with it.

Sarah Wayland 14:19

They did they did they just you know stopped drinking it because I guess it made them feel bad or something. And the sugar water, they really were just treating it like nutrition. Like it was like I need to think hard and therefore I'm drinking a little more sugar now. You know, it was super interesting, super interesting episode, but, you know, again, looking at the research behind what is it that makes kids hyper is it sugar is it you know, they talked about the fine gold diet. They talked about all these different, you know, diets that people put their kids on, and one of the things they said and I think this is super important is that whenever you restrict something, it makes the kid Add crave it worse. And so what you're doing when you restrict food is you're actually making the person crave that food more. And then you're setting them up for an eating disorder.

Penny Williams 15:14

Yeah. And that's the way we grew up. Yeah. You know, get dessert unless you have dinner when you finish your dinner. Yeah, it's always a treat. Yeah, it's always something that's not forbidden, necessarily, but held tightly. Like, you really had to be on your game to get some sugar. Right. Yeah, it was a treat, or reward. And, yeah, I think our culture is set up a lot of dysfunction around eating in that way. For sure. Yeah. The other thing that I think a lot of parents ask about or wonder about a lot is different types of brain training. Yeah. And there is even more available now than there was for you. And I way back when our kids were younger, and there are more that are actually being studied, or they're studying it more.

Sarah Wayland 15:59

I guess, I should say. And I think there's some good data there. But the longevity of, of it seems to not yet be really known. You know, that was really funny. And I saw use neurofeedback is my example because that's one I get asked about a lot. And you know, what I find with neurofeedback is for the people it helps, it really does help. Like it can be life changing. But there's a significant percentage of people, it doesn't help. And I actually think this is a really important thing to talk about is individual differences. So there are individual differences in how we respond to things. So like you were talking about allergies a minute ago, like not everybody is allergic to, I don't know, red dye or something like that, right? Like, not everybody has that allergy, but for the kids who do have it, it is a very real driver of behavior.

And when you're doing research, if you have outliers like that, in your data, they can pull the data, you know, towards something having an effect or you know, or not having an effect. And I think we really should be looking at what is it about the individual that makes them respond well to neurofeedback, for example. And if we can characterize Oh, this kind of person, you know, with these cognitive features is going to respond well, then that would be really helpful. But right now, what I have to say to people is, you know, well, nothing else has worked. And if you're willing to give it a try, and you know, have the money for it, you can do that. But I would you know, ask the person you're working with, like, how long should it be before I should start seeing some impact here? And you know, after that period of time.

Evaluate, are we seeing a difference? Do a baseline measurement, then measure after that period of time? And if you're not seeing a change, stop? Yeah, so many of these things, it's not going to hurt to try them. The only thing that you might waste is some money and some time, right? Lots of money and time and your kids emotional energy to because your kids are working. You know, like when you're doing these things like your kids are there's an impact on your children. Yeah, right. So you know neurofeedback is work, and it's time they can't spend playing in the backyard.

Penny Williams 18:27

I think it's important to to say here that we're not against anecdotal evidence, right? Everything doesn't need to be fully scientifically proven to work for all people in order to get behind it. Right. It's just that there are many things that work for a few that are sort of presented to parents of kids, especially with ADHD, but also as dumb as working for everyone. And that's why I think we're really sort of driving home the idea of making sure that there's some evidence somewhere, but there can be anecdotal evidence. And I think often it is worth a try. You know, if you have the money to try neurofeedback, I certainly would have done it and had we had the funds to do it when he was younger. I absolutely would have tried it. I knew people who had had their kids in Neurofeedback and had really helped. I know, people who had tried it and it didn't help, right, I knew several who it helped while they were doing it and for a little bit after and then it sort of wore off, right? It was something like more of a continual practice thing, if you continue to do this kind of thing. It's going to continue to help.

And so, you know, I think being able to find people when you can, who can say yes, it worked for us that's worth a try or no, you know, I think some to about some other sort of national programs. I'm not going to name anything specifically that pull some things together and say you know this I will absolutely change everything. They almost use the cure word, but not quite. And it's a whole lot of money. And what I find is, you know, I would say 98% of people who I've ever talked to about that program have said, it did nothing. They spent a lot of money and a lot of time, and it did absolutely nothing. And so I think, you know, it's nice that we have the ability now to go on, like Facebook groups like we have, and ask other parents, Hey, have you tried this? What was the outcome for you knowing that not necessarily will your child get the same outcome? We're not saying that, but just sort of seeing are there people out there that have had a positive experience from this particular brain training or supplement or whatever it is, I'd be very careful with supplements, because a lot of our kids are super sensitive with them. And you should always be careful with supplements and medication for sure.

But really, in general, you should be asking your doctor. So I want to make sure that we're we're being clear about that too. Like you really need to be working with a physician around supplementation, but especially if your kids on prescription medication, as well, there can be some really negative interactions. Some extreme, I think there's just a handful, but there are a handful, it can be really, really dangerous. So always, you know, not just, Oh, my friends can take this and they say it's working better like, Okay, now take a printout of the ingredients and stuff to your physician and say, Hey, I would like to try this with my cat. Is it a good idea? Right? Could we do that or not? I've learned to be really careful about that myself, because I take like pressure medication. So now I'm always like, Oh, I can't start a new supplement, unless I make sure you know that it's not going to interact with things that are working hard to keep me going keep me alive.

Sarah Wayland 21:46

Right, you know, it's hard to though is that doctors are different about how much they believe in supplements, and, you know, herbal remedies and things like that. And so, you know, depending on what you have access to you may get advice, you know, to not use something that might be helpful, right? Yeah. Yeah. And so I think that's where parents get, they're just like, Okay, I'll try anything, you know, Doctor says, Everything's bad. So I'll try anything. And that's really hard. I mean, you know, with medications, I always advise people to work with a child psychiatrist who really understands, you know, ADHD, or really understands autism. And, you know, good luck getting access to a psychiatrist, you know, there just aren't enough of them. And so people are forced into having to work with their general practitioner who may or may not understand the medications may or may not understand these interaction issues, may or may not understand dosing issues.

Penny Williams 22:47

Yeah. And I would say, sometimes, it's about goodness of fit with your physician. You know, I've had physicians in the past who are like, won't even entertain the idea of supplement for something, right. I just had to move on. Because, to me, I want to consider possibilities. And if somebody is just going to shut me down, yeah. Anytime I have anything to add to the conversation, right? It's not a good working relationship. I don't feel good about being heard. Right. And I do you want a physician with an open mind, personally. So I think, you know, sometimes it's your doctor shutting everything down, you ask about maybe it's time to try to find a new doctor, trying to find somebody you feel better with?

Sarah Wayland 23:30

You know, I mean, sometimes you do hear wacky things on the internet or in a Facebook group, and you bring it to the doctor, and if the doctor can say, okay, so, yes, here is you know, why people say that, here's why I think it's a bad idea for your child, and explain that to you. That would be okay. Right. That's, that's an actual conversation. But, you know, I don't do that or that's not advised. Like, okay, well tell me why it's not advised. Like do people die from you know, liver failure? Because they take it? That's a problem.

Penny Williams 24:05

Yeah, like, we're not saying, If your doctor says, No, I wouldn't give your kid bleach to cure something, that that's a problem. That's a good thing. What we're saying is more like if they're just shutting down every alternative, other than medication, but you really feel strongly about, you know, navigating and trying and considering alternatives, then that's not really a good fit for what you want, what you're looking for, in somebody who's gonna guide you medically, you know, so let's sort of tie this in a bow here at the end. And recap what we are talking about here. You know, one, I think, is to reiterate that we're not against anecdotal evidence. We just want to make sure that there's some sort of evidence backing and to know that it doesn't have to be for the majority. You know, for instance, studies on a VHD medication stimulant medication show that about 80% of people benefit from it if they have ADHD, studies on B vitamins for ADHD or something like that are going to be a far lower statistic. That doesn't mean that might not be helpful for you or your kid. It's just different, right? And so both of those I think can be valuable. The other is to be open to trying things, right. Be open to learning about medication about other things that you're interested in. And being open to saying, you know, I can try this. And keep notes. Yeah, make some data for yourself. Yeah. So you can look back and say, Yes, this really is helpful, or no, it really wasn't helpful.

Sarah Wayland 25:46

Measure at baseline and measure after treatment.

Penny Williams 25:51

And try to be as objective as you can, which is really hard when you're raising a challenging child, complex child. But, you know, I found that I would go to the pediatric mental health MD that my son was seen for a long time for medication. And every time I'd go in there every month, I'd be like, it's all bad. It's not good. It's not working, it's all bad. And he would ask me, specifically, what is not going well, I'm like, just all of us all bad. And I finally started keeping daily notes. Because what I was realizing was that, that really hard stuff was clouding every single thing for the whole month. And by the time I walked in the door, I was just exhausted. And it was all hard and all chaotic. And so that's what was on my mind said it was just all hard and bad, right. And I wasn't very clear and objective. And that's what he really needed to understand what sort of adjustments to make to medication and stuff. So I think that that's a really important piece of it, is if you're going to try something, make sure that you're really keeping some notes, you know, to that point, and I know you're trying to bullet everything out.

Sarah Wayland 27:03

I just feel compelled to add something, which is that knowing what that medication actually targets. So, you know, like, if you're taking a stimulant, then that might make it easier for you to sit still. Or it might make it easier for you to stay focused on something. But it might not make it easier to, I don't know, play basketball or something, right. So knowing what you are specifically targeting can be really helpful so that you actually know what to look for. You know, I have a friend who used to say the pill is not the skill, it just makes you available to learn. And I think so often parents think the medication will automatically make their child have excellent executive functioning, no, but it'll make it easier for them to learn those executive functioning skills.

Penny Williams 27:56

So important too. And sometimes we try medications off label for things. And so you're taking it for x. And that's what you need to be thinking about, not what you know, most people take it for, and maybe, which is true for some ADHD medications and other things for mood and anxiety and depression. So that is really important. You know, the last third bullet point I would make is just to trust yourself and trust your gut, you know, and if you feel like something seems a little too good to be true, there is a cliche for reason, it probably is too good to be true, right. And, you know, if somebody's promising you a cure, they can't deliver on that, that is not a thing. You cannot cure ADHD or cure autism. And just, you know, really focusing in on the little voices that you have, as a parent, those are really powerful things, we have powerful intuition. Even if we don't know a lot about something, I find that often how I felt about it in the first place. Was pretty accurate a lot of the time, not ADHD medication, though.

Sarah Wayland 29:07

I was just gonna say you can you know, you said earlier, don't make your responses fear based. So it's really hard to know when your feelings about something are fear based, as opposed to rationally, this is what I'm truly seeing with my kid. Right?

Penny Williams 29:23

Yeah. Somehow for me, I separate my gut instinct and fear. Maybe I'm just weird like that. Not sure. Somehow I feel like my gut is more like pushing me to things. And fear is like pulling me back from things holding me back from things. But we're just getting into semantics here. I think everybody knows what we mean. Yeah. So you know, there is a lot to weed through out there. There's a lot and there's way more for people now who are starting than when you and I started. You know, one of the big problems for us was there wasn't enough information out there. Yeah, now there's too much and you know, there are are some standards just sort of lean on to like attitude magazine is very reputable child MIND Institute is another one that I really love me to understood.org is great. Yeah, you know, these are all very tried and true, you know, science backed publications and organizations that really do a good job of making sure that they're only putting out factual information. So, when all else fails, kind of, I think lean back toward that back toward what you know, is good and reputable. You know, if you're questioning something, and you just can't trust the information you're finding, go to those sources, you know, and see what they have to say about it, as well. And then always, the support of community is so so valuable for this journey.

Sarah Wayland 30:47

And I'll add a caveat there too, though, because, as I was saying, you know, individual differences, they are real. So just because somebody has had a dreadful response to a particular intervention, doesn't mean your child will have the same dreadful response. It might be the magic elixir that you need for your child. So sometimes I find those communities can be a little misleading, where somebody's like, Oh, that was the worst thing for my kid ever. And yeah, it was the worst thing for their kid for sure. But that doesn't mean it's the worst thing for all kids.

Penny Williams 31:20

Exactly. Yeah. And I think we touched on that at the beginning, talking about how stimulants, you know, different stimulants work for some and not for others, right. And vice versa. You know, your family does really well amphetamine based, turned my kid into an aggressive monster. Frankly, he can only take them affinity based. But you know, that's the thing that there are individuals who do really well on each medication. So there are lots of people who do get invited to answer a lot of people who do get on Concerta. They're not overlapping, but the medications exist, because they do help some people. And I think that's really important to remember as well. Yeah, we're out of time. I think we've given people a whole lot to think about and chew on here, this discussion. It's just really, it's tough, it's tough to just dive in out there. I mean, to find sources where you know, that the information has been really sort of vetted, and has to, I think, the some level of experience behind it as well, meaning like, you know, the things that we put out into the world, also very much have our perspective.

And as moms of neurodivergent kids and the experiences that we've had, the things we've tried that just don't work for almost anyone and you know, stuff like that. And so I think finding sources with that, as well can be really helpful to parents to hear that not just clinical sort of publications or forums, but also those who are living in. So for everyone listening, you can get links to some of these podcasts episodes that we mentioned in the show notes for the episode. You can find those at parentingADHDand autism.com/219 for Episode 219, and I will see everybody on the next episode. Take good care. Thanks for joining me on the beautifully complex podcast. If you enjoyed this episode, please subscribe and share. And don't forget to check out my online courses and parent coaching at parentingADHDandautism.com and at thebehaviorrevolution.com

Transcribed by https://otter.ai

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I'm Penny Williams.

I help stuck and struggling parents (educators, too) make the pivots necessary to unlock success and joy for neurodivergent kids and teens, themselves, and their families. I'm honored to be part of your journey!

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