Autism and Medication: Part 2

Photo: Rhendi Rukmana

The New Child Medication Fact Book 

The difference between the Child Medication Fact Book for Psychiatric Practice, Second Edition compared to the one that came out a few years ago, Dr. Feder begins, is that they don’t use the term ‘Autism Spectrum Disorder’ and only use the term, ‘autism’ because instead of talking about ‘treatment’, they talk about ‘support’. Dr. Feder acknowledges there are mentions of disorders in the book such as Depression or Obsessive Compulsive Disorder (OCD) and Attention Deficit Hyperactivity Disorder (ADHD), which he thinks should fall more under neurodiversity rather than a disorder, but he couldn’t get that past the publisher.

I mentioned the podcast I did about ADHD, a VAST topic, given that Dr. Ned Hallowell would like to change the label of ADHD to VAST, and Dr. Feder shared that he interviewed both Dr. Ned and Dr. Russell Barkley about ADHD for the CARLAT podcast (which is now up to 3 million downloads) within a few months of each other for one of the issues of the child psychiatry report. Dr. Ned was very positive and optimistic talking about making it all work by partnering up with the right person so it all works and things like that while Dr. Barkley was more doom, suggesting that if you don’t treat it, you’ll have a higher incidence of diabetes, obesity, and hypertension, etc., and your lifespan will be significantly shorter. It was such a contrast from Dr. Ned’s outlook, Dr. Feder shared.

Dr. Feder says we’re talking about diversity that impacts quality of life which affects autism as well, and getting back to medication, this new book puts treatment algorithms in for whoever is diagnosing–whether it be doctors or nurse practitioners, etc.–to give them an idea of what might be a good path to follow. It’s not a cook book, because everyone is different, but what Dr. Feder didn’t want people doing was jumping right to the FDA approved medications for irritability and autism without considering other options.

The Current Situation

Most autistics have some sort of irritability, because it’s hard to be an octagonal peg fitting into round holes all day, Dr. Feder jokes. But if you go to a doctor, all they have is what’s legally marketable for the problem of irritability and dysregulation, which is Risperdal or Aripiprazole, and that’s what insurance will pay for. Sometimes they’re very helpful, and even life saving, but the side effects are very serious, including neurotoxicity, Dr. Feder warns.

You do have brain changes over time with these medications, Dr. Feder explains, and you have to watch for that. Some of these changes can include catatonia or a muscle stiffness, neuromalignant syndrome which may be associated with Catatonia, Tardive Dyskinesia, which causes new or weird movements that don’t go away, which isn’t good either, he says, or more commonly, weight gain which can lead to early onset diabetes or hypertension. And while they can do things to prevent some of these side effects, shouldn’t we be trying to prevent them, he asks. And that’s the point of the algorithm, Dr. Feder states. 

The Alternatives

In our case with autism, Dr. Feder says we need to look at sensory motor and communication difficulties first, and use developmental, relationship-based approaches where we’re using ourselves and our relationships to help people to be calm, connected, and in a reasonable flow of meaningful interaction that helps you build your problem-solving skills so you’re not as irritable as much of the time. And even if you’re going to a doctor to get something to help you out, Dr. Feder says there are supplements that can sometimes be very helpful and there are milder medications that are often helpful.

For example, he offers, many people on the spectrum have ADHD symptoms and the most recent research shows that most ADHD medications work just as well for autistic people as for non-autistic people for attention and focus, which can help you be a lot less upset, irritable, or dysregulated when you are able to focus on stuff. And the side effects profiles are the same as well, he adds. The medicines certainly have side effects, and you have to watch for them, he highlights, but it’s certainly better than the anti-psychotic class medication which have much bigger, potential side effects.

In sum, using milder medications, and treating co-occurring conditions is preferred, he says, including sleep problems. Like with sleep problems, you shouldn’t go to medication first if you can help it, he insists.

Why the Algorithm?

The Child Medication Fact Book for Psychiatric Practice and their algorithms are their way of telling the medical community that there is a better way. They want to change minds about how we support autistic people, Dr. Feder says. The audience for the book is indeed prescribers, but it’s also for families because you want to be an informed consumer of these medications.

Dr. Feder says to consider a very busy prescriber in an office who doesn’t have a lot of time and wants to give you something that works. They prescribe you and anti-psychotic and it works, so everybody’s kind of happy at first. But months or a year later it’s taken its toll. Dr. Feder says we want people to be thinking of non-pharmacological things they can do first.

In addition, he continues, 9 out of 10 psychotropic medication prescriptions don’t come from psychiatrists, but come from non-psychiatrists, including pediatricians, physician assistants, nurse practitioners, and others, so how do we get these people the best tools instead of just the pharmaceutical companies pushing medications on them and making a lot of money from them?

Dr. Feder says you have to sometimes be an ‘RPM’, as Dr. Greenspan used to say (a ‘Really Pushy Mom’) and use ‘we’ language, as Dr. Dan Siegel suggests, by saying, “Maybe we can look at this” showing them the new book rather than using accusatory language or putting the onus on them.

Health Care Professionals Still Don’t Know the Options

Dr. Feder is pleased that the American Academy of Pediatrics has encouraged pediatricians to get good at doing the basics for depression, anxiety, and ADHD as well, and he believes that they should include autism, too. I brought up how what is still so lacking is the knowledge about DIR/Floortime and developmental approaches. Doctors still just talk about ABA because that’s what they’ve heard. Dr. Feder says that this is due to the dominance of the traditional ABA approaches.

There has been a lot of talk about the Naturalistic Developmental Behavioural Interventions (NDBI) that are out now, which are the ‘kinder’ and ‘gentler’ models, including the Denver model, but they are very short-term, Dr. Feder explains. It doesn’t last very long, so the next phase tends to be ABA, because the ABA committees are using that as their entry. So, it’s really important for other health care professionals who are working with autistic kids and families to know the differences between the traditional ABA, the NDBIs and the Developmental, Relationship-based approaches because–if for no other reason–the approaches to an upset child are so radically different, Dr. Feder shares.

In Floortime, we lean in to somebody who is upset, speak softly, and empathize with intensity, whereas ABA tends to psychologically abandon the kids by ignoring them to get it to stop, and it works. It stops people from responding. They give up trying to get help, which doesn’t help, Dr. Feder explains. It just gets you to comply to what other people tell you to do, which isn’t very safe. It’s neglect and abandonment, emotionally, Dr. Feder says. He would rather deal with somebody who’s feisty and negotiate with him rather than just does whatever he says. 

The Algorithms

You will have to purchase the book to see the algorithm, but Dr. Feder can talk us through it and talk about some of the approaches in there. Dr. Feder began by starting with the co-occurring conditions including sleep difficulties, anxiety, depression, and ADHD.

The Algorithm: Sleep

Starting with sleep, there’s an assessment phase, Dr. Feder explains. Sleep itself could be an entire podcast or course. A lot of our kids don’t sleep very well. We try to figure out what it is, he says. Are they getting too much blue light from screens, are they not getting enough exercise during the day, or are they frightened at night? Sleep hygiene is an important thing to do such as putting screens away a few hours before bed, avoiding caffeine and foods that can get you amped up before bed including Salicylate containing foods (e.g., Feingold diet), etc.

But if you give people a sleep hygiene sheet, most people know these things already. You have to take the time to break down what bedtime is like. Work on the problems bit-by-bit. You have to problem-solve each sleep hygiene idea, Dr. Feder explains. There are even some more milder behavioural type strategies you can use. Dr. Feder says that if someone is having trouble getting to sleep because they’re scared and want you to sleep next to them, you can gently over time get further and further away so they can track you knowing where you are from a distance, for instance.

Some people use melatonin then say it doesn’t work but then you find out they were using 10 to15 mg when you only need 1 to 3 mg, Dr. Feder says, but you have to give it about 1.5 hours before they go to sleep. And, he says that most of these melatonin supplements are short-acting so they don’t work when the child wakes up as part of a normal sleep cycle. He doesn’t want them using sleep drugs, ever. They’re not even good for most adults, Dr. Feder insists.

The side effect he worries most about it is the child waking up while on them and doing whatever their emotions tell them to do without any judgment, he warns. And, he shares, they’re not approved by the FDA for kids. Some people use milder drugs like Benadryl which is very problematic long-term. He says that if you are using sleep medications, start to wean them gradually when you have a good sleep pattern established. Dr. Feder doesn’t like to use the sedating anti-psychotics either.

Other medicines you might hear about for sleep, Dr. Feder continues, include Clonidine, which a lot of pediatricians use. It’s an old high blood pressure medication and is pretty safe, Dr. Feder says. In high doses you can get dizzy, he warns. If you’re on it for a long time for irritability and suddenly stop it, your blood pressure could go up more, but usually this doesn’t happen in kids or teens, he says. Guanfacine is another similar drug that is like Clonidine’s cousin.

The Algorithm: Depression and Anxiety

If we’re talking about depression, Dr. Feder continues, a lot of kids are suffering because the world is a tough place, which wears you down, and you don’t feel good about yourself, the world around you, or your future. Sometimes kids feel like life isn’t worth it anymore, so we need to be screening people for suicidality, he suggests. For autistic kids, though, there isn’t a lot of research on it, Dr. Feder shares. The most commonly used suicide screen in children and adolescents is the Columbia Suicide Severity Rating Scale (C-SSRS) which is pretty long and verbally complex so we would like to simplify the language for our kids.

You might prefer to use the Ask Suicide-Screening Questions (ASQ) and for treating depression, we’re back to non-pharmacological things like DIR: calm, connected, relationship-based flow of interaction, being heard, being seen, and being felt. That’s the mainstay of what we try to do. Physical activity is so helpful: keeping people active and engaged during the day in meaningful activities that work your body, Dr. Feder continues. We tend to crave fat, salt, and sugars when we’re down, so try to eat more protein and less of the simple sugars, he says. Get more complex carbohydrates. Use these things first.

If you’re going to use a potion like St. John’s Wort, they can work, but there’s so much variability between pills that it’s hard to rely on that. Dr. Feder says that not only might each pill not have the same dose in it, but not even the same stuff in it because there’s no oversight so it’s hard to trust the ingredients. Sometimes people have trusted sources of herbal supplements, Dr. Feder says, but there’s no real oversight on that and when you see studies of people opening up and measuring the amount of St. John’s Wort inside each pill, it really varies. It’s problematic.

Melatonin is also not monitored, but it’s not as big a deal, but with a supplement that’s mimicking an SSRI, it’s a more serious problem. Another supplement, SAM-e, has similar issues, Dr. Feder shares. When you get to anti-depressants, Dr. Feder continues, the bottom line is that there are a couple SSRIs that have the studies that show that they sometimes help, but not reliably, and not the same as the anti-anxiety medications. Neither have a lot of research but anxiety is more responsive to these medications, he states.

Fluoxetine and Prozac have been out since 1989 and are pretty robust for anxiety problems–maybe not as strong for depression, but they have the most evidence of any anti-depressant. Zoloft (sertraline) is another one. Dr. Feder gave a couple more examples. He says that every other anti-depressant doesn’t have good research and all anti-depressants have about a 1% chance of new suicidal thinking so you need to monitor for this, he warns. Most of the time, though, he continues, kids feel better on anti-depressants and the suicidal thoughts go away.

The only other medication that helps make suicidal thoughts go away in people with mood problems is Lithium, Dr. Feder says, but that’s a lot more complicated, which is not a topic for this podcast. For both anxiety and depression, Dr. Feder says, therapy works. He said what type depends on the family and child and how much you’re able to use speech and have complex thinking. DIR does not require abstract, complex speaking, he explains, so there’s a lot more breadth and mileage you can get out of DIR, he states.

The Algorithm: Non-pharmacological approaches

What also is so helpful for our kids, Dr. Feder explains, is good sensory integration, occupational therapy. Sensory experience impacts our entire life, no matter who we are, Dr. Feder continues. Paying attention to that can help you feel better, whether you’re depressed, anxious, have ADHD, or are a neurodivergent autistic person. Improving the breadth of your level of comfort through a DIR approach where you do meaningful things that might not be as comfortable, but you’re improving the things that you can tolerate, whether it’s food and feeding, or the sticky stuff on my desk, or being out in different kinds of weather. It may be hard, but because you’re doing something that’s really fun you’re able to tolerate it a little more and get used to it enough so it’s not such a bad thing.

And then, how can you not talk about social communication when you talk about autistic diversity? Dr. Feder says to find people who understand you and can coach you as a parent to be able to hear and understand your child better and hear, understand, and catalogue their intent, whether it’s what they’re showing on their face–or not showing–and what their behaviour is communicating, so you can communicate with them in a shared way.

The Algorithm: Pharmacological approaches

Only after that do we get to the heavier medications, Dr. Feder says. Low dose Naltrexone is one to discuss. It’s been used in the opioid epidemic. The theory, that hasn’t yet been tested, is that there may be some differences in the opioid systems of autistic individuals that has something to do with them being a little bit less responsive in some ways to the world around them. Naloxone and Naltrexone can reverse that. That, Dr. Feder doesn’t know. But what he does know is that on low dose Naltrexone (3 to 5 mg or even less, contrasted with 50 mg used for treating alcohol-related problems), some people feel a lot better, and it’s pretty safe. In the higher doses, they do liver function testing, he explains.

Propranolol is an old high blood pressure medication, different from the last one Dr. Feder discussed above, which keeps your heart from racing. So instead of being anxious before giving a speech, you can take this. A lot of autistic kids do better on this, too, he says. Some of our kids won’t show on their face that they are upset and maybe their heart is racing. When they finally get overwhelmed, they get demonstrative in their upset. It’s pretty safe stuff, but if you have asthma it might make it worse, so you have to watch for that. If you are an athlete, it could prevent your heart rate from getting up to where you need to be to perform, so it’s not ideal.

If none of these are working, there are also anti-convulsant/anti-epileptic drugs, Dr. Feder offers. If you have a seizure disorder, you need to be treating that first. A 24-hour EEG can help find out if there is seizure activity that needs to be treated. And seizures peak around middle childhood and adolescents. Dr. Feder names a bunch of them that are all very different medications. First, he talks about Gabapentin, sold under the brand name Neurontin. The hard part is knowing how much you need and it can also combat some anxiety as well and rarely do people get addicted, but it’s possible.

Another anti-convulsant is Oxcarbazepine, sold under the brand name Trileptal is also pretty safe, but you have to watch blood chemistries especially if the child is sick. The main thing is finding the right dose, Dr. Feder explains, and also people sometimes get clumsy on it. Valproate (Depakote) is a really good anti-convulsant. If you have someone who is really aggressive and has ADHD, the first thing is to use stimulant medications because 60 to 80 percent of the time, you try stimulant medications like Ritalin or another type like Adderall.

If these don’t work, then you go to Depakote or the anti-psychotic, Risperdal, which we’ll talk about below. Depakote works pretty well for aggression, though, Dr. Feder says, but you have to watch blood levels and liver function. This would be the next level for a very dysregulated autistic individual before going to the anti-psychotic medications. Next, Dopamax, or Topamax, is one of the few medications in psychopharmacology where you tend to lose weight instead of gain weight and it might even prevent weight gain with the anti-psychotics, so sometimes they are given with them. It tends to help irritability in most kids. It’s hard on your cognition if you go up too quickly on it. Like Naltrexone, it reduces cravings for alcohol and stuff like that.

The Algorithm: The Anti-Psychotics

When all else fails and there’s irritability, dysregulation, and dangerous aggression, that’s when you start thinking about anti-psychotics, Dr. Feder says. Here you think about Body Mass Index (BMI). BMI was created by actuaries and has nothing to do with your health. It’s been misused in medicine. It’s wrong, Dr. Feder asserts. However, with the use of anti-psychotic medication, it can help guide you to which ones you use.

Dr. Feder does warn that everything he’s talked about so far is off label and not FDA approved for marketing, except for Risperdal or Aripiprazole. If you have a very low BMI below 25, Risperdal or Aripiprazole may well be the best go-to because they have the best research, but you want to think about using it with Metformin, an anti-diabetes medication, to reduce the chances of weight gain, Dr. Feder explains.

If you’re between a 25 and 30 BMI, you might try using Lurasidone or Ziprasidone. Dr. Feder says that they’re not as reliable as Risperdal or Aripiprazole, but they don’t put weight on you. You have to look at EKGs, but it’s worth looking at. If you’re above a 30 BMI, you again can look at Lurasidone or Ziprasidone. If you are thinking of Risperdal or Aripiprazole, you want to think about the new medications that help make your appetite go away, which Dr. Feder lists, but getting them paid for might be a problem. But you do want to forestall some of that weight gain, he stresses.

Nothing Worked!

Still irritable? Dr. Feder suggests that this is when you might consider whether this is Catatonia and discontinue your anti-psychotics. This is a whole other talk and you might try a different anti-psychotic as well, he says, or other combinations.

Summary

Whatever you do, Dr. Feder says, use the non-pharmacological approaches first whenever possible to reduce the use of medication. And if you’re using anti-depressants, remember to talk about the rare, but very serious risk of suicidality, and behavioural activation. Sometimes people get very bouncy. With the anti-psychotics, you have to watch weight and check labs for lipids and sugar metabolism at baseline, 12-weeks in, and every year or sooner depending on what’s going on, and check for new and abnormal involuntary movements about every six months, or sooner if you need to, and consider getting an EKG at baseline and maybe annually as well.

For any of these medications, if you’re stable for 3 to 6 months, think about gradually discontinuing the medication, Dr. Feder strongly suggests. Yes, some of the kids get bigger and they seem to grow out of the medicine and we raise the dose, but a lot of times they don’t, and if they’re doing really well with their developmental approaches and other non-pharmacological things you’re doing, you can relieve people of the burden of being on these medications, he explains. The medications may be helping for a time, but they don’t necessarily help forever.

Explore all non-pharmacological options first!

I wanted to stress that Dr. Feder recommends trying all non-pharmacological options first. If your child is being aggressive because of something that’s happening in their life that’s making them be aggressive, that’s not a reason to put them on medication. Dr. Feder gave an example of an aggressive patient in the past who was on a lot of medication, but he realized that in school the IEP has him sorting silverware in school. He doesn’t want to do that. He liked to pick up trash off the floor and they were trying to stop that. They changed his job and took him off of a lot of medicines, and he was doing a lot better. See what people like to do, partner with them in that, and help them do what they like.

Thank you to Dr. Feder for updating us on the latest algorithm for medications in autism and for stressing that the non-pharmacological approach is always the one to try first! I hope that you learned something valuable and will share the new factbook and this post on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below.

Until next time, here’s to choosing play and experiencing joy everyday!