Medications for autism : Top 5 Questions and Answers

Transcript for Podcast Episode: 181
Medications for Autism : Top 5 Questions and Answers
Hosted by: Dr. Mary Barbera
Guest: Kelsey General

Mary: You're listening to the Turn Autism Around podcast episode number 181. Today, Kelsey and I are meeting up again to do the top five questions about medication because last week on podcast 180, it was with Dr. Michael Murray. It was a classic rebroadcast, one of our all time favorite episodes, and that was recorded back in 2019. So we wanted to kind of catch people up with what we've learned within our online community, within social media, about the questions that are still being asked about medication. We wanted to kind of bring it all around. So today we cover all kinds of great things about the top five questions. Hope you love it. Here's Kelsey and I discussing medication.

Narrator: Welcome to the Turn Autism Around podcast for both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host, autism mom, behavior analyst and bestselling author, Dr. Mary Barbera.

Mary: Okay, Kelsey, you're back two weeks out of this month, but we are going to hop in here and talk all about the top five questions regarding medication. I thought it was really good to talk about. Since last week on the podcast podcast 180, we re-broadcasted an episode, one of our top episodes ever with Dr. Michael Murray talking about medications and autism. So I thought we would touch on the big questions we get just to circle back and talk about medications and some of the questions we've gotten since Dr. Murray originally came on the show a few years ago.

Kelsey: Yeah. Yeah. And medications are such a big topic in the autism world because, you know, whether it's for behavioral issues, sleep issues, feeding issues, even like there might be medication prescribed. And in kids who have especially moderate to severe autism who can't necessarily communicate these things, medication can like what the side effects might be for them. It can be a really big decision for parents.

Mary: Yeah. Yeah. So let's hear question number one.

Kelsey: Yeah. So is there a medication for autism?

Is there medication for autism?

Mary: So the short answer is no. Back when Lucas was diagnosed in 1999, we asked Dr. James Copeland who we've done a podcast with. We can drop that in the show notes. We asked Dr. Copeland, Is there medication? Because I'm a nurse and my husband's a physician. And so we come from a very medical background. And Dr. Copeland, I remember very clearly said we do use medications for kids with autism, but only after a good behavioral program is in place, only after we really see what he's going to do with ABA therapy by behavior analysis therapy, which is was back then, is still is the most proven treatment for children with autism. I know there's some controversy around ABA. And I did a podcast on the Four Myths and Truths about ABA. From my perspective, we can link that in the show notes as well. So and then the other thing Dr. Copeland said, and again this was years ago, was that there's not a specific medication for autism. There's medication that treats symptoms that some kids with autism face like there's medications for sleep, there's medications for aggression, there's medications for anxiety or depression. There are medications for obsessive compulsive behavior and those sorts of things. So unless you know what you're treating, the only way you can really know what symptom you're treating is by doing an assessment and doing a plan and trying to teach without medication to get a baseline like we need to really think about first. We have to do all the things that I preach every single day, and you do too, Kelsey. So no, there's not a specific medication for autism. There are some that are more commonly used, like risperidone and Abilify are two of the top ones that I've seen prescribed. But that's kind of my answer. I don't know if you have anything to add.

Kelsey: Yeah, I mean, that would be the same thing. I would add. I know a lot of kids who end up getting prescribed ADHD medication or an anti-anxiety medication like Prozac or fluoxetine type stuff. And then there's medication, like you said, which is technically an antipsychotic, which is risperidone and Abilify. And a lot of the times we see those given to kids who have high problem behaviors, but there's not a lot of it's so tricky because again, like you said, Mary, it's so much depends on what you're trying to to treat. And at the end of the day, if a child's aggression is helped by medication, you may be able to teach more, which then can help their autism and their symptoms of autism. And if they're not learning because they have such high symptoms of ADHD, it can help that way. But like you said, having a behavioral program in place and having other good supports in place is really how you're going to help medication work to its fullest extent.

Mary: Right? Like even two episodes ago, on episode 179, we talked about sleep and now, you know, like melatonin might be used, but it might if you're not taking some kind of data like calendar data, it may actually backfire and do the wrong things. I know for Lucas a lot. We probably tried 12 medications when he was younger and I had no record. I didn't know how old he was, what we were treating, what the dosage was, why we got off of that, what side effects. But I mean, I have no idea because I did not have my calendar system, which I am a big fan of. So basically the calendar system is you get a physical calendar, not an electronic one in the front of ours. We usually have a pencil and a red pen and the pencil is used for staffing changes or those sorts of things for therapy. And then the red pen is used for any kind of medical issue. Sometimes kids with sleep problems, we can put that in there. Allergy shots do antibiotics and behavioral issues. So unless you're really keeping track of things, I think throwing medication on a situation can make it actually worse in many cases and can backfire.

Kelsey: Yeah. And that brings us to our next question, which is, my child's doctor or teacher is recommending medication. How do I know if it is right?

My child's doctor or teacher is recommending medication. How do I know if it is right?

Mary: Okay. So I first want to say that teachers and if you're a teacher out there, teachers should not be recommending medication. As you could tell from Kelsey and I talking already in the first few minutes is that it's extremely complicated. These are even as a registered nurse or as a physician, you don't want to throw medications on a child, especially a child that can't communicate side effects, how they're feeling. They might really have a reaction to weight gain or to some side effect that you end up feeling like you're chasing your tail or you're, you know, you're treating this, but this is getting worse or this doesn't seem to be helping. But if you're not keeping any data and you don't have any behavioral process in place, it's probably not going to work. So teachers, I would really not be recommending medications and then, you know, regular pediatricians could recommend it. I would really look for a provider who has expertise working with kids with autism, if at all possible. I know psychiatrist, child psychiatrists are very hard to come by. And then we do have to rule out other medical issues like PANS, pediatric autoimmune neuropsychiatric syndrome, which we have a podcast on. We can link that we have to rule out things like allergies. In last week's episode, we talked about Lucas's autonomic nervous system dysfunction, which is like that fight or flight reaction. So he would get if he got startled or was in pain, he would have aggression. So, you know, in the past when he's had aggression or self-injurious behavior, when it was kind of at its worst and he was really hitting his own head hard, you know, the behavior analyst was like, well, maybe he needs a helmet and that sort of thing. But I knew as a nurse and a behavior analyst as well that this was happening. You know, sporadically. The middle of the night he'd wake up screaming in pain. He would get startled, like, I'm not going to put a helmet on a child who is having this episode once a week or once a month, and it's clearly linked to something that's happening. But I had to go to multiple doctors, tell somebody, Dr. Murray figured it out. So even if you have a doctor who is recommending medication, I still would be a little bit hesitant unless I had a really good behavioral program in place, and I have at least calendar data to show and had a symptom that I wanted to try to treat.

Kelsey: Yeah, and I totally agree with you. I think the symptom you want to treat is the big factor for me in your assessment, because I've talked about it a lot, Brentley had a lot of self-injury and every doctor we went to wanted him on some type of medication. It wasn't until he was in a real crisis situation that I agreed to try something and what they eventually talked to me into trying and the reason why was Clonidine, because it was something that had a really low no side effects and certainly couldn't really tell me what was going on. But I remember I gave it to them and it's technically a sleep medication, but sometimes it's used at low doses all day long to kind of mellow kids out who might have this irritability. And he would sleep all day. He would be I have pictures of I'm falling asleep on a dock at a beach, just like he would just fall asleep randomly, which he had never done everywhere. And I was like, this is not a life like well. So I stopped that. And then I went back to the drawing board and kind of with my behavior analyst looked and was like. Okay. So he bang his head when he bang as he goes back to the drawing board of how do we prevent these behaviors? What skills do we need to teach them when we start teaching these skills? Is there something in his behavior that is preventing us from teaching those skills that maybe we could look into a medication for? And so, again, that's where I would go with that. What specifically do you need help with to help teach these other skills? Because it's just especially in a child like Brentley, who is larger already and is prone to weight gain, like to put them on. What's probably the most research for his issues at the time would have caused a lot more weight gain and no one else seemed concerned about that. So I think as a parent, it's just really important to trust the doctors, but also to do some of your own research on the side effects and what you know about your child, because doctors are there to help you. And when you go in saying, I have this issue, this issue, this issue, you know, they're probably more prone to just look at the medication route where as a parent, sometimes we need to look at the whole picture with our behavior analyst, with the doctor, with the OT, with the SLP and kind of figure out what what options are going to be the best. Because they started trying. I talked in their sleep episode about Lincoln's night terrors and because he wasn't sleeping, he was having crazy behaviors during the day and he was just two years old. They started trying to prescribe him antipsychotics at under two years of age, which I did my research. I realized while our sleep is the issue, let's tackle sleep and let's see if his behavior gets better. And it did immediately. Once we fixed his iron issues and he was sleeping, the behaviors went down. So again, you just really trust doctors, but also look at the whole picture before you try medication on two things.

Mary: Right. And we're also saying that sometimes, like Inderal, which is a cardiac med, a beta blocker, as you heard from last episode, if you listen to 180 with Dr. Murray, I mean, I got there. I was like, he's having self-injurious or aggression and aggression for being startled, for having pain like that. Is it? I have calendar data I can show you. Like he's having it once a week or once every two weeks or sometimes in the middle of the night. And when he said, okay, I think I know what's going on, I was like, Wait, really like it? Because I have literally been across state lines to doctors to try to help me figure this out. I mean, this went on from age 14 to age 18 where I was really worried. And then he's like, it's an autonomic nervous system dysfunction. And I'm like a fight or flight reaction. And I'm like, okay, that makes sense. Like, what do you do for it? And he's like, Oh, we use a beta blocker. I'm like, Really? There's a medicine for this. Like, not a, not an antipsychotic and not that I'm against antipsychotics. It's just I knew that that was that would just be throwing a Band-Aid on something that was happening so sporadically that related to something else. And so, you know, we're I think we're both saying the same thing. It's like we're not anti medication, but just make sure you have your ducks in a row so that you're not making things worse.

Kelsey: Yeah. And once you add the medication, taking data, whether or not your data might be great and that's wonderful and but if you're seeing, okay, this is getting better, but this is getting worse. Looking at your priorities and seeing what you know, if that's working for you or your child, and that's where the calendar data comes in. And that brings us to our next question. How do I know if a medication is working?

How do I know if a medication is working?

Mary: Yeah. So you need good baseline data. You need to go for medication. What symptoms are you trying? And then you need ongoing data, calendar data, ABC data, rate data, whatever your, you know, whatever you have the capacity for, whatever you have baseline on, you want to continue taking data at least in the beginning. And then you might need to go up on the dosage, you might need to double the dosage, you might need to taper off. Not every medication that you try can you just pull out? Some medications are actually dangerous to just stop. So you might have to work with the doctor to taper them down. You might try this, but it's not working. Even with inderal, which was literally like saved Lucas's life because it was four times a day. That was a pain, right? And he was at school and he couldn't go into community with his aide or with the school because nobody could administer the med. So we tried long acting Inderal, so I was like, all for it, right? We'll just do it in a capsule. And it didn't work. So the indoor all four times a day was working great. We tried the Inderal long acting and it was like worse than before. Worse then what if he wasn't even on it? And so again, I'm like pulling out my hair, taking data, calling the doctor. And we tried long acting Inderal like two or three times during the day, and it just backfired each time. And I was just like, okay, forget it. We're just going back to what we know works. Which brings up another point, and we talked about this last episode with Dr. Murray is we did a swab test that he recommended when Lukas was 18. We did it through Genomind.com, we can link on the show notes and it's a swab test and it basically takes the DNA of the person that you're doing swab on and it runs medication through it. So it, it sees what's compatible and it gives you a report. Green meds, yellow meds, red meds to read or medications that will most likely cause side effects because his DNA does not interact well with it. Yellow meds are it'll probably work, but there might be some issues and green is good. So for Lucas, all of the newer antipsychotics like Risperdal and Abilify, those were all in the red. And all the older antipsychotics like Haldol and Lithium were in the green, interestingly Inderal was in the yellow. The drug that really has saved his life. And because and it also said there that he's a very rapid metabolizer of Inderal which makes sense of why the long acting didn't work. He needs high doses of it and he needs a steady supply. And the other drug that was ordered as needed was Valium just for his outburst. Before we knew he had no nervous system dysfunction, we hardly used it. But that was in the red. But Ativan, which is very similar to Valium, was in the green. So just to give a little bit of context. If you have a child or client who is on multiple medication or on a medication and it's not working or. If you can get this paid for, Lucas is on medical assistance in Pennsylvania, which pays for it. So it wasn't a problem. But depending on your insurance, it might be pretty pricey. And if you have Psych, if you have a child, with Psych issues, say they're not autistic and they don't have special insurance, sometimes you have to try a few different psych beds and have failed before. They will allow this. This test. I think everybody should have it because now that we have Lucas's tests, if he developed seizures or he needed, you know, a cardiac med for cardiac how? You know, like we could look on the list and see which meds would be good to try or if he needed an antipsychotic in the future. Even pain meds. It's all meds for all people. And so really, really valuable. And I would just really encourage people to look into it. There are a couple of companies that do it. Genomind is one and Gene Site I think is another.

Kelsey: Yeah, it's definitely a good thing to do. And yeah, just watching the side effects and if you have a child who can communicate, obviously asking them how they feel or trusting them if they say something hurts when they're on the medication, then yeah, talking to teachers and everyone in their life to see. I know some families I've worked with don't tell the teachers when they start medication to see if they have an unbiased opinion on if things are working. I'm not suggesting to do that, but that's that's one thing to to do as well. Yeah. The next one is can supplements help before trying a medication?

Can supplements help before trying a medication?

Mary: So I did a video blog and it's something like are supplements all bad and medication all good and vice versa. You know, if you come from a traditional medical model, usually, you know, even behavioral analysts, you know, I posted some research and things on more supplements or zinc to copper ratio and those sorts of things. And, and behavioral analysts have like privately messaged me like, how dare you like a pseudoscience. I'm like, what? Like the use of zinc and magnesium is not pseudoscience. I mean, I don't claim to be an expert in this area, but all supplements aren't good or bad and all medications aren't good or bad. I give in that blog, I give the example of Lucas getting agitated after multivitamin administration. And it was due I think to the copper in the multivit and he did have a low copper zinc ratio and so we've been supplementing wtih zinc for years. So yes you can you can try supplements but I would do it with a practitioner. We do have a podcast with a functional medicine nutritionist, Denise Boyd. We also have a podcast with the behavior analyst and we where we talk about zinc quite a bit. Melissa Olive We can link those in the show notes just being open to whatever is going to be healthiest for your child in terms of nutrition and health. And it's not all figured out yet. I think with the child with a Brentley and Lincoln and Lucas, there's like a bunch of levers and some need to go up and some need to go down. And and that may change as they grow, as they hit puberty. You know, all kinds of things can happen. So yeah. Or you can just stay calm and try to figure it out as the person, the captain of the ship, that's the role of the parent.

Kelsey: It just comes back to me for data. You know, if you're more comfortable as a parent, starting with supplements, try it and take some data. Work with the functional medicine doctor, blood tests, stool samples. You know, they can help guide you. Brentley is still on a migraine protocol given actually by a traditional medical doctor, a neurologist actually of supplements like magnesium B2, I believe, and we had to mess with dosages. But yeah, different supplements have helped him to prevent migraines. And then, you know, a lot of people say, you know, fish oil can help young kids with autism. We gave him that and he gets like bright red cheeks, like a histamine reaction and doesn't like that. So it's all about every kid looking at different reactions and if it helps or if it does anything. But yeah, same thing. So our last question about medication is my child won't take medication. What can I do?
My child won't take medication. What can I do?

Mary: Yeah. So supplements medication, it's a challenge, especially with kids who are picky eaters and who are very don't like the tastes of certain things. Lucas Never like juice. And I, I think that's actually fine because one of the things I do not recommend is dumping stuff in juice and then the child's walking around all day with the juice. And I said, you know, sedentary stuff on the bottom. And it's just that's not the way you give. Like, if this is a real medication or even if it's a supplement, you're still paying for it. You're still trying to see if it works or not. You don't know if unless it's in their mouth and down their stomach, if it's going to work. So I do have some video blog on the importance of ruling out medical issues. I have a video blog on how to get kids to take medicine. I mean, it's a shaping process. Just like everything else, Lucas used to crush pills and put it in applesauce and then spoon it in with a strong reinforcer. Then he needed to go on the 21 days of steroids when he had his hands and his tick disorder. And so the doctors said that prednisone crushed up could taste really nasty. So he's like, Why don't you just dunk it in the applesauce and have him swallow it? So now he actually gets out the applesauce, gets out his pills, takes big capsules, dunks it in the applesauce and eats it whenever he needs medication. So for him, you know, that's his medication. That's the way he takes it. So for other kids, I would do the same. I would if you can get them to just put it on their tongue and take a gulp, that would be better because it's kind of sometimes a pain. When Lucas needs medicine, then we don't have applesauce or, you know, it's kind of like we're running around. But in general, we want to just start with something very small, like a little piece of pasta or one little piece of rice, get them to stick it on their time or even don't get in an applesauce. And then as you can get bigger, you can use things like beans, split peas in a bag so we can gradually increase the size of these fake pills. And some people will recommend like Tic Tacs and stuff, but they have a taste. Kids might chew them, kids might like them. So I would pick something bland like rice and beans, orzo, pastas, things that aren't going to be harmful for your child to swallow and then increase the size as you go, whether it's dunked in applesauce or whether it is taken with a pill, sometimes video modeling, sometimes sitting side by side and you doing it for sometimes having a sibling model it. These are just some of the ways you get kids to take pills.

Kelsey: Yeah, I agree with everything you said. And yeah, we, we, I taught both boys when they were on iron to swallow because liquid iron can be really bad for their teeth. And also my boys never drank a lot of juice. I actually find it much harder to get liquid medication in a child than teaching them to swallow pills because that's often you don't have a taste. And it's fun to be like, It's in my mouth. It's gone. It's gone. Like, That's funny. So yeah.

Mary: Yeah. Okay. Well, hopefully that was helpful to some of you out there listening. If you didn't ever watch the podcast interview last week, 180 you're going to want to check that out with Dr. Michael Murray, but hopefully this was helpful. Top five questions. And if it was, we'd love a quick review on Apple Podcasts or wherever you're listening and we'll see you right here next week.

Mary: If you're a parent or an autism professional and enjoy listening to this podcast, you have to come check out my online course and community where we take all of this material and we apply it. You'll learn life changing strategies to get your child or clients to reach their fullest potential. Join me for a free online workshop at MaryBarbera.com/workshop where you can learn how to avoid common mistakes. You can see videos of me working with kids with and without autism. And you can learn more about joining my online course and community at a very special discount. Once again, go to MaryBarbera.com/workshop for all the details. I hope to see you there.