Fact not Fiction: Autism Spectrum Disorder, Vaccines and Medication

Dr. Esther Hess and Dr. Ann Kirsch conduct an in-depth conversation with noted child psychiatrist Dr. Milena Kaufman, exploring the concerns raised by parents as they navigate current best practice recommendations for caring for their children impacted by autism spectrum disorder. 

Most pressing, Dr. Kaufman addresses the question: “Can vaccines cause autism?”

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Music

Composer / Writer / Author: ROSSANO GENTILI - SIAE IPI: 161539866

Transcript

SPEAKER_00 0:29

So this is Dr.

SPEAKER_01 0:31

Estee Hest, and I am Dr. Ann Kirst. It's a pleasure to meet you.

SPEAKER_03 0:37

Very nice to meet you both.

SPEAKER_00 0:38

I want to welcome you to our podcast on and off the spectrum.

SPEAKER_03 0:43

Thank you.

SPEAKER_00 0:44

For our listeners tonight, we want to, and how would you pronounce your first name? Melena? We have a frozen. Melena. Melena? Okay. So we have Dr. Melena Kaufman, who is a child psychiatrist working for Kaiser Permanente, and has been gracious enough to come and talk to us about some areas of, I would say, confusion for a lot of our families. So I appreciate your expertise and your clarity and welcome.

SPEAKER_01 1:14

Yes, thank you. Yes. I imagine that you have been beset by confusion in um in the field over the last six months or so. So can you tell us how you got into working with children as opposed to working with adults?

SPEAKER_03 1:39

Sure. So I did my undergrad at UC Santa Barbara as a bioester. And I think even in my first week, um, there was like an email sent out to everyone under that major, and I'm sure others as well, um, from the Cagle Autism Center, um, which is um in the graduate program at UC Santa Barbara. Um, and so I joined them and started working there. Um that was my first introduction into autism as a freshman. Um, and I just absolutely fell in love with uh these kids, and I worked as a behaviorist. Um so the the Kaggles um created something called PRT Pivotal Response Therapy, um, which is a more naturalistic branch of ABA. Um so I that was really my first um introduction into autism, and I really planned to just continue as a behaviorist and then stay and um do a PhD. Um, but I felt like there was some kids where I knew that therapy wasn't enough, and I really wanted to, I wanted to be able to wear both hats and be able to help from both angles. Um, med school was never my plan. Um, I had to do a post back and then um go to medical school, really with the goal of just serving um kids and adults on the spectrum. Um, and um when, you know, I would say kids have always been my my primary, um, but it turns out that there's not many adult psychiatrists, just the way our training goes, um, that then get exposure to individuals with neurodevelopmental disorders. And so as a child psychiatrist, we often sort of continue to um treat these these patients.

SPEAKER_00 3:31

Yes. Well, I'm I'm appreciative both how you fell into autism and as well as as working both with children and and then into the adult population. I have a similar story for myself. I started off uh having a center for zero to five, but our kids started to run and kind of had to travel with them, and then realized that there is a terrible um cliff that our post-high schoolers face. Yes, where services really are um very very poor choices, very limited, and that as you discover yourself, there's not a lot of individuals who have that expertise, especially traversing in terms of childhood into adolescence, into young adulthood. So I'm appreciative. We both are appreciative of uh kinder spirit.

SPEAKER_01 4:26

Yes, absolutely. We all kind of fit into that that same um brand. I uh always wanted to do work with children, but I never uh thought I would only work with children or mostly work with children. And as it turned out, um for me as a family therapist um covered everything. You know, it covered all of all of the people that I work with, um, covered families, covered children, covered teenagers, covered everybody. And it was the right fit for me. Because and people would always say, you know, oh, it's so hard to do what you do. How can you work with families that are so difficult? My response would always be, I know I love that. I love that it's so difficult. I love that it's the family that I'm working with and trying to help because it's what people need. We're all from families, we all need the help that whoever it is we're talking to, um they need the help, and I'm I feel like it's such a joy to be able to provide whatever I can.

SPEAKER_00 5:52

So, with that understanding, I think the reason that we have listeners tuning into our podcast is because without a question, families are confused. There has been uh a lot of very different information and guidance from the federal government that has that has changed and shifted over the last several months. And I think parents have shared with me both parents with uh neuro neurotypical developing kiddos, kids with developmental delays or potential for that. They want to know, for example, does uh do the vaccinations cause autism? Uh is there uh should we vaccinate at all? Um is there a cure and pill form for vaccine, you know, for our autism? Uh and you know, yeah, we're we're trying to create a platform here that's not in judgment as much as clarity. And so we're looking to you as an expert in the field to perhaps shine some light on some of the confusion, contradictory messages that have previously been presented, maybe where that came from and where the message is coming from today, and how do you personally guide your patients?

SPEAKER_03 7:18

Sure. Um, so I think that probably the vaccine question comes up a little bit more for the pediatricians than than for me, just based on the age range. Um, because usually I see kiddos that um at least at Kaiser, um, in my my previous role at UCSF, sometimes I saw two-year-olds and up, but at Kaiser, they usually go to pediatrics for developmental behavioral PETs, and we see um that I'm a little bit older, kind of five, five and up. So kind of out of that early vaccine schedule. Um, I think it saddens me that we're still kind of debating if I could even say that, because it shouldn't be a debate, because right, the evidence is very clear that vaccines do not cause autism. Um, and that study, you know, was very clearly, you know, um debunked that that was not the case. Um, and and it does sadden me that, you know, that's being, you know, still talked about, um, you know, how many years later, and that's still a part of parent spheres. And and I understand that as a parent, right? It is it is very scary. And um what I think is is hard is that in the last, you know, six months, but even further, I think there's a lot of missed in medicine. And I think a part of that is also unfortunately how medicine is is set up. You know, we don't often have as much time with our patients as we want to really, you know, be able to sit down. And for me, I feel like when you know a parent is is resistant, for example, let's say it's to a medication, because of course um it's very scary to medicate a child. Um, the most important thing for me to pull out from a parent is let me understand the fears because then I can address them. You know, please tell me what is it specifically right that you're worried about? Is it a side effect, X, Y, Z? What is it? So that then I can give you the information so that you're able to make you know an educated decision for your family, as opposed to write it being based on fears that haven't been addressed.

SPEAKER_01 9:17

That's a beautiful statement right there. Let me try to understand what your fear is so that I can help address it, is really what every clinician should be should be saying to their patients. But unfortunately, it's not. Right.

SPEAKER_03 9:38

Um, and so I think it's, you know, there's obviously a lot of factors, but I think right, it's you know, when parents bring up those concerns, right? Often, you know, they do quickly get shut down, like, no, you know, this is a vaccine schedule, you know, it doesn't cause autism, move on. And so then I think parents still leave with that same, you know, fear. Um, and you know, I wish the way medicine was set up, I wish we had more time, you know, but I do think it's very important to understand what the parent is is fearing and being able to address those. Um so that was hopefully somewhat sort of answered the vaccine schedule. But certainly sometimes parents, you know, will will still ask. Um, and you know, I provide them with all the evidence that you know that I can, and then um being able to kind of help. Um, I would say, even, you know, in my own circle of friends, I have a four-year-old and an eight-month-old, and certainly many of my friends, you know, have you know young children or are having babies and are in that, um, you know, and and will say, okay, I I know that I know it doesn't, but just in case I'm gonna ask you again, can you confirm for me? Um, and I think, you know, it's one thing to say, you know, no, but it it I think there needs to be an explanation, no, and this is why, right? And and I think that's the other piece. Because if we just, you know, say, no, it doesn't move on, um, I don't think that's enough because they're still hearing it from other venues, right? And that tell them that it does. Um, and so I think it it it it needs to be a longer answer so that you know people can really feel comfortable. Okay, like I understand why that's not the case, you know, and I can kind of, you know, do what again, you know, feels right for my family with that information, which I, you know, obviously as a physician, I hope is to vaccinate because there are, you know, many downsides. Um, and I think that's the other really important thing that um I I often ask families because in medicine we often are taught, or the right, the way we're trained is here's medication, I'm gonna go over the side effects, okay. Um, but we often don't talk to our patients. What are the side effects of not treating? And I often will ask parents that because that's what you're really up against. It's not a just do I take this medication and here are the side effects, right? But what happens, and so I'll ask parents to kind of you know wave it to. Um, it's what happens to my child if I don't, right? If I don't vaccinate, what are the risks there, right? If I don't treat anxiety or, you know, for you know, in in my case, right, you know, I obviously see a lot of irritability and aggression and anxiety, what happens, right? And what quality of life is there potentially from not treating? And I think those are the two things we should always be weighing and including in the conversation as well.

SPEAKER_00 12:22

I think this was actually a conversation which we had. We recently discussed whether women who are planning to be pregnant or found themselves pregnant and had a history of uh depressive uh major depressive disorder, should they continue taking antidepressants during pregnancy? Again, same question. What is the consequence of not taking antidepressants and to the impact of the health of the mother and the health of the fetus during that period of time? So it's the same idea, the quality of life issue. Can you address the question about is there a cure for autism in pill form as has been suggested again by some sources within the federal government?

SPEAKER_03 13:05

We do not have uh a cure for autism in pill form, or I would say really in any form, um, because it's not a disease that we treat, um, right? The medications that we have are to treat the comorbidities that are associated with autism, right? So symptoms of anxiety, and we often see, you know, impulsivity and irritability, um, ADHD symptoms, um, right, are treatments that can kind of help with some of the pieces behaviorally, right, are therapies. And that's really if we're talking about a treatment, right? It's you know, speech therapy to help with speech, it's behavioral therapy to help with certain children behaviors, occupational therapy to help with some of the sensory sensitivities. Um, but we do not have a a cure in pill form, right, or in an other form, right? It's it's uh the way right I describe it, right? It's it's a different way of seeing the world. Um, and and that's not something that we have a pill to cure.

SPEAKER_00 14:07

So along those lines, could you speak to some of the concerns that parents have? I I just actually assessed a child earlier today, and um he is under the age of six and uh is showing a diagnosis of autism spectrum and likely a comorbidity, uh also ADHD. And with all of the presenting kinds of concerns, a lot of hyperactivity, a lot of impulsivity, and the question is my little guy is not even quite six, but when is it a good time to medicate a child uh for psychiatric issues? And uh again, other side effects, consequences, consequences for not doing it. Do you have a rule of thumb uh in terms of age and uh direction? And finally, why would somebody want or need an individual who has an expertise in autism versus a psychiatrist uh in general, you know, to get their guidance in terms of medication?

SPEAKER_03 15:15

Sure. So I would say I don't have a specific rule of thumb. And that being said, of course, you know, the the goal is to not medicate in general, if we don't need to, and right, obviously we try not to medicate clean out little kiddos because their bodies are more sensitive. Um, but there's not a rule of thumb because every every child and every person is different, um, and the way, right, certain symptoms may be impacting their life. And again, coming back to that quality of life. Um, in general, right, if they're coming to see me, I always want to make sure there is therapy on board. Of course, sometimes also with the way things work out, you know, the weights for therapies, depending on you know, different insurance companies can take a long time. Um, and I think since COVID, I've seen that grow tremendously where you know, parents sometimes are waiting up to you know a year to have someone provide the therapies that their child needs. Ideal world, right, if two and a half year old gets diagnosed with autism, right? And first thing is really intervention and not medication, right? Um, but I've then seen four or five-year-olds that are still waiting for that those interventions. Meanwhile, right, they are not functioning well, right? And not being able to be in a classroom setting and not sleeping and hurting themselves, right? Because they're headbanging, because they're so frustrated because they can't communicate. Um, and so the question that I, you know, present to families is you know, tell me how your child is functioning. And you know, for kids that young, right, it's functioning at home with their activities of function as a family, and then functioning in school. And if parents, you know, tell me your caretakers, right, that um my child is not able to be in a classroom setting, they're not able to learn, right? That the teachers are telling me that you know my child needs to be removed from the classroom setting, um, they're not sleeping at home, they're not eating. Um, that to me, right, I would say that your child's not functioning well, right? And there's there's a poor quality of life. Um, and if that's what's you know being brought to the table, that's when I do recommend consideration for medication. Obviously, you know, in an ideal world would be hand in hand with therapy, but again, sometimes it means we have to do medications first because they're waiting for therapy. Or, for example, the behaviors are severe that the therapist says we can't work with this kiddo, right? Because um, you know, they are aggressive or um, right, the level of kind of the dysregulation and meltdowns, they're not even able to kind of build rapport. And so we kind of need to bring that intensity down a little bit in terms of the anxiety so that the child can actually benefit from a therapeutic intervention. So I would say it's very much individually based. Um, but of course, nobody wants to, you know, you know, um, just you know, start with medication, and I understand that again as a as a parent, right? You want to try everything else first, but sometimes we're in a place where it just makes sense to think about medications maybe earlier than a family would have, you know, ideally wanted to.

SPEAKER_00 18:27

So really listen to the environment cues that are going on.

SPEAKER_03 18:33

Absolutely, yes. Um, I would say, you know, most environments of like FDA approval are closer to four and five-year-olds. Um in parents, of course, you don't want that information, and so I let them know, which means you know that we just have more evidence, right? And there's more studies around that age group. Um, but I would say for this patient population, we often, you know, use medications off label, right? Or we do use medications in a different way. For example, I always start with like half of the lowest dose for patients with autism because they're much more sensitive to medications. Um, and that kind of veers into the answer of why would someone want to work with someone who has trained an autism or is an autism specialist. And I think um one very important reason that stands out is that um understanding behavior. Um, so for example, I've I've had um you know, an adult patient sent my way where the psychiatrist has tried many different medications and sort of presented me with, you know, the information where it was, you know, very clear that this was actually completely behavioral and like a learned pattern of behavior in a very specific setting with a very specific person, um, as opposed to being right a behavior challenge that we see in all settings. Um and it made sense that it wasn't getting you know better with medications um because it again it was a very you know clear behavioral response to a very specific antecedent. Um, and and you know, as psychiatrists, we don't get behavioral training in that same way that kind of the hat that I wear kind of coming from a behaviorist background. Um, and I I often will ask families to kind of be day and kind of track, okay, you know, before I see you, you know, in the next couple of weeks, please, you know, write down what was the antecedent and then what how did your child respond? What was the behavior, right? And what happened after? What was the consequence so that I can also understand? Um, because especially when you're treating nonverbal patients, right, they're not going to tell me, you know, is it from, you know, uh, for example, elopement, right? Is it because um there's a sensory sensitivity going on in the classroom, right? And the child is eloping every time when another kid yells, right? And it's very clear that that behavior is anxiety-based. Um, whereas someone else who might not have that background understanding, they might think, oh, it's an impulsive behavior, it's ADHD, right? And you put the kid on the stimulant and they get much more agitated and much more anxious, and things got a lot worse. Um, and so you know what that I think is is very, very important because you can have a lot of similarities on the surface, but what that's stemming from could be very different. And so, really needing to understand that that um the the be the behaviors beneath that.

SPEAKER_00 21:21

Well, I'm I'm personally grateful um in our relationship happened because we had a family in common, and I was particularly impressed because uh you know, prescribed medication, you know, uh we want to obviously have the the adage do no harm, right? And the concern is that there was something obviously going on, and if you did not have an expertise in how certain medications uh can lower the threshold for certain aggression type behaviors or certain uh procedure type of behaviors, that you Can um you know mistreat uh not wishing to do harm, but still harm is is done. And again, uh the reality is as you pointed out, a lot of our families don't get a chance to be seen in as timely a way as possible or for as long as they need when they see their physician. And so it can take months sometimes to get an appointment time. Meanwhile, the behaviors are are compounding the problem in school, amongst peers, and the home life is becoming more grievous, and I'm you know, I'm I'm appreciative of uh having colleagues in the field who could say, okay, no, we gotta make this stop and and to address from a very thoughtful place. Could you you tell me what kind of training is going on now in the medical community in regards? I mean, the statistic is startling, one out of every 33rd child born in the US is going to be diagnosed on the spectrum by the time they're eight. What kind of training specific to autism do uh does our medical community get so that this kind of uh thoughtful treatment can be found and families don't have to suffer for the length of time that often happens?

SPEAKER_03 23:22

So I think, and then I say unfortunately because I wish it was standardized, but it's not. Um so I think it is very different depending on where you train and even within where you train the choices that you might make. Um I think autism, uh I think the other I think hardship in in medicine around autism is that um it sometimes falls in a little bit, I think, of sort of no man's land, because for example, of course, right, pediatrics covers it a little bit because right, it's a neurodevelopmental pediatric, you know, disorder that they see. And then developmental behavioral peeds, right, they cover it to some degree, but then they have limitations. For example, if you know, oftentimes if a child needs certain medications like antipsychotics, right? And we know that sometimes that is a medication that individuals with autism do need for symptoms of irritability and aggression. Um, and then for psychiatry, so much emphasis for us is right speaking to our patients, right? And we know there is a very large, you know, portion of individuals with autism that are nonverbal. And um, that isn't often part of psychiatric training. Um, and so um I think that's one hardship is it kind of, you know, you would think, you know, that, oh great, that means all of these specialties must know. Um, and I think the challenge is that it's covered so briefly in each one, um, that there isn't enough in-depth understanding. Um, and again, because um it's a spectrum. And so, right, one child with autism does not look like another child with autism and does not respond, you know, to medications as far as another child with autism. Um, so I did my fellowship at Stanford, and for example, um, you know, they had an autism clinic, which is why I chose it. Um, but for example, my adult psychiatry residency, which was in New York, um, out of um uh Northwell did not have an autism clinic. And so I, you know, knew that I needed that, and so I did that as an elective. But right, my colleagues necessarily did not have much exposure, right? Unless they happened to have a patient walk through the clinic.

SPEAKER_01 25:33

You had to find in my adult training, yes. In your adult training, right? Yes, shocking um shameful.

SPEAKER_00 25:41

Well, but and because she had a she had a behavioral history so that she would look for it. Yes and so we're so weird.

SPEAKER_03 25:50

Um and so, and I mean um, and so you know, similarly, right, not every um, right, not every hospital has an autism clinic, right, associated with it. Um, obviously the larger academic, you know, um settings do, but um not not every hospital. And so um, right, I I still have, you know, colleagues from residency that, you know, will text and say, what do I do? You know, there's this, you know, patient with autism coming through, and um, you know, we'll reach out because there wasn't enough right of of exposure for them. Um, right. And you can learn, like, okay, well, here's the standards, here's what's FDA approved, but again, right, that that may look very different and the response may be very different than what it just says in the textbook or what's FDA approved. Um, so it's you know, I wish that it was more standardized. Um and I I um I hope maybe one day, kind of as you know, medicine catches up in the sense that there's not enough, um, there's certainly not enough child psychiatrists in general, but there's definitely not enough of ones that um, oh, did we get disconnected?

unknown 26:59

No, no.

SPEAKER_03 27:00

Oh, okay, sorry. Um that have, you know, that have access um to be able to have that kind of training. Um so similarly in my fellowship, um I chose to do, we we have we choose certain clinics, um, and so I I obviously chose the autism clinic, um, but you know, that was just me and another and one other fellow, um, right? So other fellows chose other things, which of course, you know, maybe that's where their kind of career led, but many people do go into more general child psychiatry, and I think that's where it's challenging because now that the number of patients that are coming to general child psychiatry that do have autism is growing.

SPEAKER_00 27:44

Absolutely, absolutely. Well, we are we're very fortunate that you had the the early interest and pursued the training, and we hope that this message goes out to future physicians uh who are thinking about psychiatry to a you know try to get a subspecialty in kiddos because uh we need we need good docs uh for our children, and uh we certainly have uh to be prepared for the onslaught of of children that continue to uh present. Actually, that may be a good way to ask you a last and and and probably very complex question. So when I started out in in this practice, uh more years on I want to admit, um, I walked in and the diagnostic criteria, well, the statistic was one in every 150th child uh who was born by eight would be diagnosed. And that has now rapidly descended to one in every 33rd child, as I mentioned. Can you give thought as to why there is such a huge rise in autism spectrum uh disorder and um speak to I guess both the diagnostic uh uh um capabilities and beyond.

SPEAKER_03 29:10

Sure. Um I think you know that the largest sort of um change was when we you know had the separate diagnosis of aspers and when that no longer became a separate diagnosis, right, and all of that became absorbed by autism spectrum disorder. Um I think that made the the largest change in terms of right now the diagnostic criteria is much larger. Um and so it needs to encompass that because before the number only included very specifically autism spectrum disorder, um, as well as before we had PDD and OS, pervasive developmental disorder, none otherwise specified, which right were kids that didn't have all of the criteria, right, and only met some kind of on the other end, right? We had PDD and OS and then autism spectrum disorder and then Asperger's and um similarly, right, became absorbed. Um so we really sort of had three separate diagnoses and three separate um, I would say right numbers in terms of frequency and that all became absorbed in terms of autism spectrum disorder, mainly in in order to be able to get more services for these individuals, because oftentimes for insurance criteria, you had to meet specifically autism spectrum disorder to get certain services covered. When it was very clear that someone with PDD NOS would, you know, benefit very clearly from the same sort of services, right? Or on the other end of the spectrum, right? Someone with Asperger's would still very much benefit from certain interventions. Um, so that that really is the largest contributor to how that's changed. Um, I also think um, you know, of course, social media plays a role, right? And and and people sort of learning for themselves and kind of being able to identify certain things. Um, and my hope is right, to some degree, we've been hopefully chipping away at certain, you know, biases in mental health care and being able, right, to um that it's it's not something right that we need to sort of right hide. It's something that we need to kind of figure out how to get the right support so that we can, you know, benefit. And I mean again, just coming back to that quality of life piece. So um I would say those are probably the two biggest contributors to that number at ratio.

SPEAKER_00 31:29

Okay, well, I'm I'm appreciative. Um, I'm also aware that children of color have uh become um uh they're they are also being addressed in terms of uh diagnosing. And I think overall, I think I think we're all better at diagnosing, period. So I think it's a combination, but I agree with you. I think the the the combination of one big umbrella to autism spectral disorder as of 2013 has made a huge, uh, a huge uh contribution to the increased numbers. But I will tell you that um as long as we have good clinicians like yourself in the field, I think we I consider ourselves very lucky. And I want to share that tonight we clarified, I think, some very important pieces that have just uh added confusion uh to our family search and trying to find answers for the complexities of raising children in 2026. So we both thank you for being part of tonight's uh podcast. And uh we're gonna sign off. So let me just say thank you. This is Dr. SD Hess. And I'm Dr.

SPEAKER_01 32:38

Ann Kirsch, and I truly appreciate hearing what you as a clinician have to say about what your journey has been like and what uh what you've gone through, what your your life has been like as a clinician, because we've all experienced that, and it is not easy, and it is uh at times quite difficult to get people to pay attention to what it is uh the questions we're trying to ask, what it is that we really want people to know so that the kiddos that we're working with get the best care that they can possibly get. And, you know, in our in our time, you know, working for a long time in this field, um I've seen, certainly I've seen it get better. I've definitely witnessed uh changes happening that are are kind of stunning, I would say, in the efficacy of what what I'm witnessing, what we're witnessing. But there's so much more to do. There's so much more that needs to be done. And so as we go through our podcast and we interview people like you, listen to really closely listen to what you're saying, um, it makes me it makes me glad, on the one hand, that there are people like you who are fighting the good fight, really out there, really, really paying close attention. And there are there's so much more to do. So I'm grateful to be able to speak to you.

SPEAKER_00 34:31

We are on and off the spectrum. My pleasure. This is a podcast that listens to your concerns and voice. We thank again Dr. Melania Kaufman, who has joined us for the evening, and we wish all safety and a good night.

SPEAKER_03 34:46

Yes, thank you for having me. Have a good night.

SPEAKER_00 34:49

Please take care. Bye-bye.