Kids Matter!
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Kids Matter!
The Politics of Autism with Dr. Bryna Siegel
CORRECTION: Dr. Bryna Siegel led one of several field sites involved in validating the DSM-III-R and DSM IV diagnostic criteria for Autism while professor of psychiatry at University of California, San Francisco. She was NOT the lead of the DSM Autism field trials, a position held by Fred Volkmar, MD (Yale University)
Dr. Bryna Siegel is a Developmental Psychologist (PhD Stanford, 1980) who has co-founded one of the earliest US Autism Clinics (Stanford,1983), then founded and led the Autism Clinic at University of California, San Francisco from the late 1980s to early 2010s, serving as Professor of Child & Adolescent Psychiatry there. She has authored five books on autism by peer-reviewed publishers, written several chapters and research articles, and over 100 research abstracts on autism, and headed two DSM field-trial sites for the validation of diagnostic criteria for autism spectrum disorders. Over the past ten years, she founded and has served as Executive Director of the Autism Center of Northern California which provides training to clinical psychology graduate students considering a career in autism, focusing on refining a public health model for affordable, university-quality autism diagnostics and patient training to low income families living with autism. In the last 40 years, Dr. Siegel has lectured and trained teachers, therapists, parents and fellow academics across the US, Europe, Asia and the Middle East. Her most recent book is The Politics of Autism (Oxford University Press, 2018).
Executive Director, Autism Center of Northern California
Professor, Child & Adolescent Psychiatry, UCSF (Ret.)
870 Market Street, Suite 401, San Francisco, CA 94102
T: 415-391-3417 / www.ACNC.org/ www.BrynaSiegel.com
https://brynasiegel.com/about.php
Welcome to Kids Matter. I'm Dr. Elisa Minkin. As a pediatrician, mom and grandma, I understand how challenging it can be to help our kids grow into their best selves. We are so much more powerful together. Here I will be sharing the knowledge and wisdom of a wide range of people who understand and care deeply about children. I'm hoping for your input as well because kids really do matter. They are our future.
Alisa Minkin:I am so excited to have Dr. Briana Siegel, a developmental psychologist with a PhD from Stanford, who has been a leading voice in autism for over 40 years. Dr. Siegel co-founded one of the earliest US autism clinics and founded and led the clinic at UCSF for decades. She is headed to DSM Field trial sites for validating autism diagnostic criteria and is the author of five books most recently, the Politics of Autism published in 2018. She currently serves as the executive director of the Autism Center of Northern California focusing on providing affordable university quality diagnostics. Hi, Dr. Siegel. Thank you so much for doing this with me.
Bryna Siegel:You're quite welcome. I'm excited.
Alisa Minkin:I'm really excited and I have to say that autism is everywhere now. Wherever it was in 2018, it's exploded in the public eye, but not necessarily in a way that I think we agree is particularly productive and is maybe counterproductive. So I wanna start with the number one question I always get asked, which is, why is autism increasing? Not is it, but wild.
Bryna Siegel:I think that some of what the CDC is reporting, if we wanna use that as our benchmark for autism increasing in, that the the way autism is diagnosed and the methodology that the CDC uses to ascertain cases has a lot to do with that. The definition of autism now encompasses kids who wouldn't have previously been counted. So as someone who's been doing this for 40 years, I can meet a new family, a new child, and say, yeah, your child, we are finding today that your child meets diagnostic criteria for autism. 10 years ago. probably would not have been the label you were given or 20 years ago. This would not have been the label or 30 years ago. But I do meet kids who 40 years ago would've been autistic then and is now. So we have an ever expanding definition that includes more and more children. And that's the main reason. And some of it has to do with earlier diagnosis. A lot of it has to do with much later adult diagnoses, including adults who self-diagnose.
Alisa Minkin:Yes. I wanna talk more in depth about what is autism by today's diagnostic criteria. I don't think we have to go back and go through the whole history, which you do beautifully in your book, but I just wanna start with where, what do we think of as autism now?
Bryna Siegel:I think we, we need to be careful of why we need to be thinking of autism. There are what I would call the 20 years ago they would've been. Diagnosed with autism or under DSM four or tr or the criteria we had prior to 2013 would've been diagnosed autistic. And those children have a certain set of needs and have what I've called autistic learning disabilities, specific patterns of learning that help them or help. Result in them not attending to a lot of the information they're being given either directly or incidentally from their world. So their learning gets attenuated based on their autism symptoms. They're, they don't imitate, they're not interested in repeating things because for, so for social praise that they get from family members and so on, and those traits of autism are really, to me, the core of what we need to treat. And we now are seeing more and more people getting the diagnosis, who, they're feeling is that they're not getting the information, but, functionally we're not seeing them lacking in getting information in the same way that used to be requisite for, given a diagnosis of autism.
Alisa Minkin:One of the ways of looking at this is it could be that we're just diagnosing people with milder autism, which is truly autism. Another way is maybe we're over diagnosing it. So I wanna go back and be really clear. What would you say the current DSM five tr, right? We're in the DSM RE fifth Edition revised,
Bryna Siegel:Yes.
Alisa Minkin:do they define autism? I wanna be really concrete about this.
Bryna Siegel:I think there's some important things there. I think that DSM five has contributed to the continued broadening. Some of it came about when they had Asperger's in and then they took Asperger's out, and those people just became of the spectrum. I think that just like we know that there are people who. Or have a tendency to depression, have a tendency to anxiety. I think we now know that there's a autistic like personality, just like there's an anxious personality or a depressive personality. And then the question that really hasn't been answered is, does that present the same adaptive barriers to life that having a full diagnosis of autism does? I think the people who have an autistic personality, if you will do have harder time processing certain kinds of information. They react to certain things more extremely in terms of maybe being avoidant or being perseverative. But that by and large they have, channels of adaptation that allow them to function in everyday life in a way that people who have a more pervasive, if you will, not to go back to an old word, we've now taken out of the DSMA more pervasive form of autism symptomatology.
Alisa Minkin:What I hear you saying is, oh my gosh, they are diagnosing people as having a disorder when they really don't. It's more like traits or personality. And I think it's a really important point. Where do you draw the line between normal, you using that word with quotation marks and autistic, and again, I'm gonna use it in quotation marks and at the same time. Are we going to call autism a disorder or are we gonna call it a way of being. Those are two different things and that leads into the neurodiversity movement. I'm not ready to go there yet. I'm not ready to go there,
Bryna Siegel:Okay, let's not
Alisa Minkin:but
Bryna Siegel:But I think
Alisa Minkin:i.
Bryna Siegel:I can answer your question. To answer your question, I think that we have, tools in our autism treatment toolbox, and those tools might include things for a 4-year-old, like a BA treatment, which is, can be intensive, it can be one-to-one. It can be, in some people's minds, very rigid and depriving a child of their free will. And that's a tool in their toolbox that once you get a diagnosis of autism, it may or may not be appropriate for you. And so one of my concerns is that when we see kids have, or teenagers or young adults who have more of an autistic personality, I think we need to be understanding. toolbox to use with them and what toolbox to be using with the kids who we would've always called autistic. And part of what's driving this problem is that most of the research money goes into looking at environmental causes, the genetics, and things that have to do with etiology. And we don't even have very good research in psychopharmacology, but that knowing who really benefits from tools in the autism treatment toolbox for kids with more severe or more pervasive forms of the disorder. And what are the tools in the toolbox that kids with more mild forms of the disorder should be getting? We don't have a clear definition and in some ways I find myself thinking more and more about, not that I'm not gonna say an autistic personality as I'm calling it, is not a problem. But we need to understand. What kind of things benefit those people now, right now that group represented by the adults in that group are saying we need to celebrate neurodiversity period. And they're not really saying, how do we have accommodations that give that person a choice to not feel that they're, their life is not exactly what they want it to be because of their neurodiversity. That there's lots of websites where people celebrate their neurodiverse superpowers. And I think that's just so much marketing. I think that, that it's great that we have people who are talented. People have, we've always needed talented people to lead work in different fields. But to say that, that's my neurodiverse talent and therefore if there's anything about me that Bo bothers you it's my right to do that. I think that as a humanistic society, we always have to help people with maladaptive behaviors have the choice of being more successful across the board. And I'm a little disturbed that the neurodiversity movement is saying I can be as quirky as I want to be, as long as I have something that I can to as my superpower.
Alisa Minkin:A lot to say.
Bryna Siegel:Yes, go for it.
Alisa Minkin:You went through so many things, I was like wait. First of all, I'm a huge fan of the concept of neurodiversity when applied in the right way, and this is the problem I have with autism. It's, if you're going to call it a different way of being. Then call yourself neuros, spicy or something like that. Don't use the name of a word that's been called a disorder. Don't say it's not a disorder, because for so many people it is impairing their function. And it's really I get where you're coming from on that, but I love, and I'm finding it easier as a pediatrician, by the way, to make the diagnosis when the parents are feeling this is just a different way of being and I will help them function better. So to me, it's not either the neurodiversity movement or the pathology The problem I have, and you said something else that I have a lot to say. I have so much to say or forget it all. The other thing in terms of the neurodiversity on social media, and I think that there's some very problematic aspects. And I think the problem is when it takes a pathologizing view, right? And says I can't help being this way. This is my way and we have to accommodate it. I think it's a two-way street, right? And I think that saying that a BA is bad. Which is what the neurodiversity movement are often intertwined with the anti a BA movement across the board when we know that it has the best evidence base when done okay.
Bryna Siegel:and done. For the right kids. Done for the
Alisa Minkin:Exactly.
Bryna Siegel:who need to develop instructional control, they need to develop an instrumental way of reasoning. I'm gonna have to do something to get something. It's, it becomes very functional, but I think it's been burned whole cloth, if you will, burned at the stakehold cloth by the many in the neurodiversity movement.
Alisa Minkin:You know what's making it worse
Bryna Siegel:What
Alisa Minkin:the predatory aspect of the current a BA business. If you read about the Medicaid fraud and just crazy stuff is going on bad. A BA in my mind is worse than no. A, B, A. And so when they're saying ABA is bad and they can point to bad A, b, a. Even for the right kid, that's still bad, but not, it isn't. Autism equals a B, A and I think that was the point you made earlier.
Bryna Siegel:And I think another just, and this is almost a little bit of an aside, but I think the quality of most a, BA that I'm seeing kids that I see receiving these days is by and large worse. And it's because a BA has always been an apprenticeship system where people who do good A, BA have new people joining as behavior therapists, and they get a chance to watch and work with experienced and talented behavior therapists and understand why are you doing what I'm doing? And what happened with COVID is that all the good a BA therapists went back to graduate school, they all decided, okay, I can't go into the home and do a BA, what am I gonna do with the rest of my life? Now this is forcing me to decide, do I wanna be a teacher or a doctor, a psychologist, whatever, or is it time for me to start a family whatever. And so I've now seen tons of. A BA therapists who do in California, you have to do a 40 hour video program to become a registered behavior therapist. And a lot of them have no idea how to work with children'cause they haven't had anyone to mentor them and actually show them how it's supposed to look with a particular child. And it's it's if we were deciding we should build cars just by hiring everybody who lost their job during COVID or during a union strike. And now we'll teach a new crew of people to build cars by having them watch 40 hours of videos.
Alisa Minkin:Do you wanna talk a little bit about your idea of getting the parents more involved with the A BA?'cause? I did read about that in your book.
Bryna Siegel:Yeah part of what we do at the Autism Center of Northern California, it actually started as a program called Jumpstart Learning to Learn. And I actually wanted to call it learning to learn because I think that's when parents get the diagnosis, is to realize that the child is learning differently. And I think often the reason parents bring their kids for diagnostic assessment, especially if they have older kids, is that he should be doing this by now. Or why doesn't he wanna wear, Superman, big boy underpants? Because that's how I trained his two older brothers. They realize that the child is learning differently, and that's what brings them in for a diagnosis. And so trying to, help the child remediate, and I don't mind using the word remediate. Give them tools they don't have so that they can access the ways the environment teaches. A preschool teaches by. Assuming that you wanna do what the other kids are doing, we're all gonna do the hokey pokey and put our right hand in, our left hand in and so forth. And the reason kids do this is they like, I wanna do what everybody else is doing. And if you have a problem with your mirror neurons and you don't have any, like why would I wanna do this? Then you are missing out on learning opportunities. And so to me, parent training is pointing that out to parents and, looking for what we call the teachable moments. When are things where the parent wants the child to do things that they're motivated and, okay, if I have to do it your way to get what I want, I get it. Okay. So it's not so bad. I'm motivated, I get what I want. If I have to, touch the refrigerator or the picture of the, yogurt cup on the refrigerator that's pasted there to get my yogurt cup, instead of kicking the refrigerator and crying, Hey, I'm getting my yogurt cup quicker. I'll do it. And so we want parents to find those mo moments and use them because then they're teach, they're, it's learning to learn. The child is learning to learn, and that's the core deficit. And the parents have all the best opportunities to provide opportunities for the child to engage in that.
Alisa Minkin:I'm gonna also say that I wish that there was a way to help parents build a team, because as an autism mom, we're tired, we're overwhelmed. I felt reading the book that you were saying parents should do more of the A, B, A, or, I know you weren't saying that.
Bryna Siegel:No I, in fact, I think when I see parents doing a b, a, it's you've got enough on your plate already. Stop doing that. There are other people who can do that and especially because I think that a, BA therapists commonly will tell parents you're gonna work on generalization. But what they really mean is that just do more of what I'm doing, and the child actually needs to be able to use that as a database. To use maybe vocabulary he's been introduced to or cause and effect he's been introduced to, to make new things work for him. And the parent can do that, but the parent is also not the teacher in, in fact, when I've been in situations where there's very little a, BA available in California, we have a lot of people in very rural areas. For example I'll say to the mom, get yourself a little smock or apron and when you're gonna sit in a little room at a little table and do what the a, b, a therapists do, put on your mom a, BA smock. And when you finish, take it off so that there's a way of saying, we're not at the table anymore. I'm not at my smock anymore. And we'll do things a little differently now. And and I think in we could, not a discussion we'll have today, but I think some of the problem with homeschooling is this, that there's not enough of a clear delineation between being a teacher and being a mom.
Alisa Minkin:Yes, and again, I'm still having problems with the idea of a parent having to take on a teacher role as opposed to empowering the parent to help raise this kid best with their autistic brain. I don't think they're the same thing.
Bryna Siegel:not at all. You're absolutely right. And that the parent needs to be the parent of an autistic child. What motivates him? We use both A, B, A and also what some people would call PRT or DIR, or Floor time, or Hannon. There's all these different approaches, but a lot of them have more to do with using what naturally motivates the child as your instruments of teaching. So if you want kids, some kids are very interested to learn their colors, their numbers, or their shapes, but some are not. Some of them just want to up trains or matchbox cars. And if they do that's where it's at for them. And how do we I always think of it as the thin edge of the wedge. How do we start where the child is that and show them that what interests them belongs in a bigger world of objects or activities that, because they find a train going around a Thomas track. Interesting. There's a bunch of other stuff that is related to this. There's other kinds of tracks, there's other kinds of vehicles. There's making yourself into a train that goes around a track. There's a lot of different things that the child can do that help develop their conceptual thinking so that they have the capacity to generalize and become more abstract. And parents, it's not so much what parents have to do because I'm very mindful that one of the problems is that parents who have an autistic kid are always guilty that they're not doing enough. That they should be doing more or I, I just, he wants to just lie with me, with his head on my lap and watch tv. Now you don't. That's beautiful. You don't have to be making that into a teaching moment because
Alisa Minkin:doesn't have to be a teachable.
Bryna Siegel:everything does not have to be a teachable moment. You can grab them when they happen. But I think that haven't gotten there in our conversation, but a lot of what I do with parents of older kids is when we're starting to look at prognosis and where is the kid going and how has he responded to the intervention that the child has. Some of it is what interventions the parent has been able to line up, but some of it is what the child's been able to take from what's been lined up for him. And we're, this is a, some complex interaction and. It means for the parent, it's not that you chose the wrong therapist or you didn't sign up for enough hours of it, or you didn't fight hard enough for more of this, and in addition to that, but this is who your kid is. And I think, I think I've mentioned this to you when we've talked before, that to me it's like signing your kid up for piano lessons when there're two, because you think that being able to play piano for you as an adult is a wonderful release and in involvement and engagement and there's nothing bad about it makes my brain better. And after the child is four years old and has had two years of piano lessons, the piano teacher might say he needs a better piano teacher than me. But the piano teacher might say, I think he'd rather be on the softball team. you don't get to choose that your child is gonna be a gifted pianist. And disability is the same way. You don't get to choose that your child is autistic. You embrace who they are and how they can do things.
Alisa Minkin:I love that you embrace who they are and how they can do things. And I think that's one of the cruxes behind argument against a BA is that it used to be this is gonna cure your kid. This is gonna make them not autistic. And I think some of these people who are advocating against it went through a BA in those times.
Bryna Siegel:I think. Exactly. Yeah. I've talked to some of them. Yeah. And I, and there's a couple that I remember when they were in a b, a and what their a BA programs look like. Yeah,
Alisa Minkin:It's normal for parents who have kids who are significantly impacted by autism to want them to be cured. And I'm putting that in quotation marks because it doesn't mean that they are anti or they're autistic phobic. It means they just want their child to, to succeed in life like everybody else wants their child to succeed in life. And it's a process to get through that phase, right? It's a phase.
Bryna Siegel:Let's break down what you just said. So I think yes, parents want their kids to succeed in life, but there, there's really one component which is parents want their kids to be happy. they want their kid to feel like they can control their environment, that they are not adrift in frustration. And so some of it, and we've again talked about this, when we think about teaching kids activities of daily living where the child now has independence and has freedom from, I'm hungry and I don't know how to get something that I am picturing that I want to eat, that's happiness and it's not success in the same way as will he ever go to college.
Alisa Minkin:But when you are a parent of that toddler, you're thinking, will they get married? Will they go to college? Will they have children? That's your definition, and you can only change your definition of success for that child through a very long process.
Bryna Siegel:Yeah, I agree. Yes. But it's also true of all your typically developing children, okay? So of your typically developing children and how many kids do you have? You have a
Alisa Minkin:Six. Thank God. Yeah.
Bryna Siegel:Okay. You have six kids. Maybe the one who you thought was the brightest 2-year-old is not earning the highest income as a young adult. And maybe the one that you thought, he's pretty good, but maybe he went to law school. We, we don't get to choose who our kids are, and we understand that some who went to law school, they should be married by now, the other four married. But everybody is growing up and defining their success in a different way. And we really want, and we don't know, as a 2-year-old, we don't obsess. Is this the one that's gonna go to law school? Because my husband's a lawyer and I've got six. At least one of them has to be a lawyer.
Alisa Minkin:Yes, we might
Bryna Siegel:you might, okay.
Alisa Minkin:see. I love that so much because that was the lesson, that was the gift that my daughter with autism gave me
Bryna Siegel:Okay.
Alisa Minkin:on, the whole redefinition of success.
Bryna Siegel:Yeah. I get for you, I use the example of law school rather than medical school
Alisa Minkin:Thank you.
Bryna Siegel:Yeah.
Alisa Minkin:That would not be a definition anymore. Sorry.
Bryna Siegel:But
Alisa Minkin:No, but like to love your child and to let them be who they were meant to be is true for all children. I just, someone once said, the parenting children with special needs or disabilities, or whatever word you want, is just like parenting typical children only more.
Bryna Siegel:It is more and different the things that you wanna do, and how many times a kid might be just tickled pink to do the same thing over and over again. Is different. And it's just going with what he let's get him tickled. But on the other hand. There's also a balance and kids who don't wanna do their homework or don't wanna study for the test, parents put a little pressure on the kid. If you, I think you'll feel great if you get the highest score in the class, and I think you're smart enough to get the highest score on the test. So let's, let me quiz you on a few more questions. And so the parent tries to motivate that child. So there's nothing wrong with motivating your child, but there is something wrong with what people who hate a BA call kill and drill, drill and kill.
Alisa Minkin:And a BA has changed to be much more naturalistic when it's done in its ideal way.
Bryna Siegel:That's correct. Yeah, it
Alisa Minkin:Yeah.
Bryna Siegel:because evar, we've lost evar who started it? And a lot of EVAR students have been more the people who what he was doing and thought it was brilliant, but they also thought it could be made more natural. And that's some of the work that we see from Laura Schreibman, who was head of psychology at UCSD and Bob Kagel who ran the Kagel Center at uc, Santa Barbara. And there's people in Florida. There's people all over who have been doing this more natural stuff, who are, who started off working for EVAR Lova and doing it just the way he said, but branched out.
Alisa Minkin:You alluded to other methods. For some reason, A BA is the only methodology that has some evidence-based behind it. I'm not even sure how strong that evidence base is. We've been so busy. This is what you talk about a lot in your book with other priorities.
Bryna Siegel:Yeah.
Alisa Minkin:I don't know how much research we've done.
Bryna Siegel:There's not enough research. Hasn't been enough research on responder characteristics to a BA, mean, as a physician, as if you, are you doing off-label prescribing of a psychotropic medication, let's say an SSRI to a very anxious 4-year-old autistic child? are gonna look carefully about whether that's helpful and the way in which it's helpful. And the next time you see a 4-year-old anxious autistic child, you're gonna think why do I think it was so successful with that first kid? And if that second kid doesn't have that same cluster of traits, you might say let's try something else first. We're always trying to learn from our re from response to intervention. And there has been a paucity of response to intervention. And I, quite honestly, I'm. of hearing people say, A BA is evidence-based and therefore everybody should get it because yes, it is, but there hasn't been enough research on who the responders were even after all these years. And so a physician, a parent needs to look at a particular child and who's in a BA and say I think we've gone where we can go with this. Not just, if he's not responding, the answer is to do more. And for a number of years, that was how a BA was used. And I think that's where some of the people who hate it so much now that I remember years ago I was in New York, actually in New York City at a very early department of Public Health due process hearing where a parent was suing for more a, b, A, and I was the actually the expert witness for, I don't think he needs more of what the parent is saying. And, and it was because this was a 2-year-old and they were doing things like the child would fall asleep in his chair and they would just gently tap his cheek or even pinch his cheek to wake him up. And I said, A kid who wants to be asleep is not benefiting from intervention. He needs to be asleep. Or wanted to have the mother do 10 of the 40 hours a week that were then Derek year. And the fathers argued that was slave labor, that his wife was not being paid and he was not gonna stand for his wife being a slave yet. then learned as research proceeded over the years, that the extent to which the parent is aware, and probably a big unmeasured effect of what did initially was that he had the kids get 40 hours a week for one year from his graduate students at UCLA, and then the parents had to lead and go back to wherever they came from. And in the process, the parent had been trained to do a, b, A, so that when she went home, she could hire more therapists who knew what to do and she could teach them. But that meant that the parent. Finished 40 hours a week and took the kid grocery shopping and if they'd been working on colors and they were going past the tomato cans, she'd ask what color is that? And that it was like this thing where it's not just touch red and get an m and m, it was like it's red that was built into what he did. But it was totally unmeasured. But it was what every mom did if they were having to do 10 hours of it. And it happened just naturally, incidentally, and it was an unmeasured effect.
Alisa Minkin:It's really important to keep in mind that more is not necessarily more, and that
Bryna Siegel:better.
Alisa Minkin:autism,
Bryna Siegel:of
Alisa Minkin:yeah. Yeah. Autism doesn't, Sorry.
Bryna Siegel:It's it's dose response. Just like any medication, it can be very effective. And you say, this is working great, let's take it up higher. And you take it up higher and you don't got something good anymore.
Alisa Minkin:And not every child is going to be appropriate for the a BA methodology.
Bryna Siegel:Right.
Alisa Minkin:And I think one of the promises as we're diagnosing a wider and wider spectrum and you get credit for using the autism spectrum as a term pretty much one of the first, it was your book that, that was my favorite when my daughter, yeah.
Bryna Siegel:think, I think that book, which came out in 1996, I think was the first book that had the word spectrum in the title
Alisa Minkin:Yeah. That was very helpful for me because the, when my daughter got diagnosed, it was still the PDD Asperger's Autistic Disorder trio, and it left, kids like my daughter who were in what I call the muddled middle out of actually getting autism. What I'm trying to say is we are seeing true autism and that's why the rate is rising in part, not that we are not seeing it. Is there some over-diagnosis, especially self-diagnosis? Yeah, but I will say as a pediatrician, I see more missed diagnoses, particularly in the older kids because they don't, they're not as clear cut than I see kids being overdiagnosed
Bryna Siegel:I see. Both we see a lot of teenagers, but most of the teenagers we see, and that's because I left University of California, I'm now working in, I've started a private clinic where I'm trying to develop a model for providing high quality care to low income Medi-Cal Medicaid families in California. We do it by linking it with a a training program for new clinical psychologists who aren't able to be paid but need to be supervised. They have their supervisors there all the time. And, I think we're seeing a lot of immigrant families who come in with who, because they've come from elsewhere with them, and especially come, mostly we're seeing from Latin America countries that don't have resources for diagnosing or serving autism. We're seeing kids like that, who've, that you could say they've been missed, but if you're 14 and you're coming from Honduras, it's not that you were missed, it's just there ain't no there in terms of diagnostic services. so yes. But but we're also seeing a lot of parents, I think I recently read that 26% of kids enrolled in Ivy League colleges have some kind of accommodation that they got into school with the idea that they had some kind of a DHD or autism spectrum disorder that they were, that accommodations needed to be made available to them. And I'm not sure that. Does much. I'm not sure I agree with that. I think that think we have a lot of functional A DHD that comes from the, amount of time that kids are spending on the internet and on FaceTime. I think Jonathan hates new book about This is amazing because it's true. The, we see these kids who can't learn without a laptop. We have Soloway talking about how young men, watch so much porn on the internet that they have no idea how to ask a girl for a date because their model is awful. And they become very solitary and socially unskilled. I think. Is that autism when we get a developmental history that this 18-year-old has never been on a date with a girl. But he does spend a lot of time on the computer. So the parents are interested in how can he have a career with computers. This is really, it's really complex.
Alisa Minkin:I think it's a chicken and egg. First of all, when you're talking like that it's hard to tell
Bryna Siegel:Yes,
Alisa Minkin:and number two, I do think societal, yeah, I think societal factors are pushing the spectrum from normal. And by the way, I'm gonna say this loud and clear. This is, as I understand it, the spectrum blends seamlessly into normal with all shades. And the problem is, if you think of shades green turns into blue gradually. How do you define as aqua blue or green? And I think a lot of the, of what used to be called a shadow syndrome or broader artistic phenotype in that middle gray zone, people are now saying is autism.
Bryna Siegel:It's all those that is all autism.
Alisa Minkin:Right?
Bryna Siegel:phenotype is autism, and I think some of the current diagnostic scene comes from that. Okay. In particular, I can refer to the A DDoS and the A DIR, the two main tools for very comprehensively diagnosing autism. And we use the ados. It's okay, I don't love it, but why? it started Kathy Lorde was, I believe, doing a postdoc at that point with Mike Rudder, who was a very famous child psychiatrist who had done the very first study that talked about the genetics of autism. Him and Susan Holstein, who had another student of his, had looked at identical twins and zygotic twins and saw that at that time and in that sample that 95% of if one mono, if one, monozygotic twin had autism, the other one did the one die. If they were mono zygotes, both of them would have autism and that the, it was like 15% for the twins. And oh wow, this disease is genetic, is really genetic. And that got Mike Rudder into, or he then became Sir Michael Rudder, got Dr. Rudder into. Wanting to look at that broader phenotype. He was the one that kind of coined the concept of a broader autism phenotype. And the A DIR and the ADOS were designed to encapsulate that to be able to sample for traits that, especially the A DIR, this two and a half long hour long interview who were those broader phenotypic parents, but also kids with the broader phenotype. And that's really what of the door to starting to think about it as a spectrum.
Alisa Minkin:Yes. And I think about when you're calling autism as an autism spectrum disorder, sorry to all the neurodiversity folks who get upset about that, but we're gonna use it as a disorder.'cause that's how clinicians use it.
Bryna Siegel:no.
Alisa Minkin:The key is function. It's function. And I'm wondering whether societal factors are causing more people to have functional problems. If you think about it, say you grew up on a farm versus in today's fast-paced social media driven society, there's actually something called what do they call it? Screen autism or something like that. There's actually a term. There's something, it's not the right term, it's something, but it means autistic like pattern that is really just due to overuse of screens early on. And if you take away the screens, they no longer look autistic.
Bryna Siegel:We certainly see that in kids we see in the clinic. We, the parents, wanna let the kid have his iPad in the room with him? No. And we and the child might actually interact and interview. We actually, I had a bit of a disturbing conversation with a mom who's a clinical psychologist at the end of last week because she felt that we missed the diagnosis of autism in her 17-year-old. And in fact he's like a big screen time guy and not too much in terms of real friendships and all of that. in a room alone with the examiner, not with his parents. And we were all watching on video. He had a re he was very articulate about social relations and how he feels about people defining who's a friend versus an acquaintance and what makes someone a friend of his. And he had it. But if you hand him back his iPad, he's a sort of so in one word, maybe I'll respond, maybe I won't kind of guy. So I believe that might be what you're describing. Yeah. And so there's
Alisa Minkin:Which is.
Bryna Siegel:also that. And but it speaks to, in a way, it's almost like a canary in the coal mine. It speaks to what can go wrong, what's going to functionally be a, an adaptive problem this young man can face. And I would've loved to talk about it with the mom, but she felt that absent, absent agreeing with her that he was autistic, we obviously do nothing for him.
Alisa Minkin:It's hard because there is no clear line.
Bryna Siegel:Now there, there is no clear line. And and therefore I've always, in all my work in talking, not in the politics of autism, but in my book, helping Children with Autism Learn. That's why I chose to call it autistic learning disabilities and autistic learning styles. And if you have an autistic learning style, how do you help? utilize that as well as they can to adapt well, and if they have autistic learning disabilities, how do you use those autistic learning styles to help them overcome the autistic learning disabilities? So it's not a limitation and I think it's very complex and it hasn't been unpacked that, I think part of the insistence on, in the neurodiversity movement, in celebrating neurodiversity or talking about Superman powers and so forth, is to say that there's something really good here and you don't wanna throw out the baby with the bath water. And know, I think a good example I can give you of that, as many years ago I was on the board of an autism nonprofit and we were very happy to have joined our board a prominent Bay area autism. Celebrity who was a guy named Arc Shallow and Dr. Shallow had won the Nobel Prize in physics at Stanford for having developed the laser beam in the forties or fifties or something like this. And he gave all his money to develop a group home for his son with autism. And, he was, what we call the broader autism phenotype. I remember him coming into a board meeting and one of the men from the men's room and one of the men on the board pointing out to him that he hadn't zipped up his fly. He had the top of his pants, showed some of his ankle before his socks began. And he even went so far as to bring a very nice camera and wanna take pictures of his fellow board members so that we could write our names on the back because he said he wasn't very good at recognizing faces, which is part of all that's been written about the fif form gyrus and four facial recognition and autism and so forth. It was totally there, but the guy bloody invented the laser beam. So yes, he had superpowers that other people didn't have. But socially he was a very sweet guy, but he was not socially not socially skilled. No one was gonna turn him into a diplomat.
Alisa Minkin:He sounds like what we used to call Asperger's, which we've lost that
Bryna Siegel:Yeah. And so he was able to succeed in life because if you're a physicist, actually no one expects you to be particularly socially skilled. That I have met many kids who have dads who are physicists and, know, down to a single one of them. All their other friends are other physicists who, when they get together, they talk about physics. They are broader autistic phenotypes, but they are able to make a good adaptation. I've had dads where I've thought, starting to talk to them, maybe they had mild intellectual disability. And I say what do you do for a living, Mr. Whatever? And he says, I work for NASA ames. We're working on developing satellite guidance systems, okay. He doesn't have mild intellectual disability, but hypothesis is that he's the broader autism phenotype accounting for why he has two autistic children.
Alisa Minkin:But you're calling broader autistic phenotype, but I'm calling mild older autism. It's semantics at some point and
Bryna Siegel:and
Alisa Minkin:It's
Bryna Siegel:the, we don't talk about the broader phenotype anymore. We just talk about those people as being on the spectrum.
Alisa Minkin:so right. I think it's a double-edged sword at the milder end and where it shades into what we call normal. You could say what is normal anyway. And this is why I like neurodiversity when spun the way I like it, which is to accept that we're all different, our brains are different, and that differences are wonderful and you can celebrate your quirks. It's why not, why are we even the problem I have with the neurodivergent versus neurotypical dichotomy, I'm nd m mentee is first of all, neurodivergent applies divergent from normal. That there is some set normal as opposed to diversity, which is that we're all different and that differences is cool and we should bring those differences together. As opposed to neurodivergent meaning a pathology. And the.
Bryna Siegel:some of the neurodivergence can be pathological. of what makes you different can make you quirky. It can make you talented at certain things, and that's great. But there are people who are neurodivergent who have very average abilities can do average things. They can take the bus and they can microwave burritos and quesadillas, but don't have any special talents, but also have autism traits that are. Impairing their ability to integrate with larger society. And to say that yes, you're neurodivergent, doesn't mean you don't need treatment for the things that are holding you back and helping you have a more more adaptive way of functioning. And I think that the the neurodiversity movement is running rough shot over that.
Alisa Minkin:They're minimizing. They're minimizing the disability, which by the way can happen even at the highest end. And that's where I think we are very helpful for the most part, when we diagnose more mildly impaired people with autism, because we're giving them a chance to learn their strengths, learn their weaknesses, get help for the weaknesses, be able to verbalize it, get the supports they need, even at the mildest end. But I wanna bring this up. I don't hear this talked about is there's also the no SIBO effect, right? And the no SIBO effect. We have placebo.
Bryna Siegel:Okay.
Alisa Minkin:where you take a pill and you think it works and it does work because your brain makes it work, right? I'm not, that's a terrible description of placebo, but most people know what you mean by placebo. The no SIBO is not talked about as much, and that's sometimes if you get an autism diagnosis and you thought you were normal and now you are not. For example, it really hit me when I saw a video of a young man and he was saying, I really miss my pre-diagnosis days because I had so many friends. And then I just realized I was masking.
Bryna Siegel:Yeah. That's terrible. That's terrible. And I,
Alisa Minkin:I wanted to cry.
Bryna Siegel:that. And yeah, that, and that really worries me that I think there are some people that I've met who feel like they need to act a little more autistic to, to validate their neurodiversity. I've been at conferences where, there are high functioning autistic people and there they, I think once I was actually, it wasn't a podcast, but I was doing an interview for somebody and, this high functioning autistic person walked in and said, I'm supposed to be here for an interview and you're not supposed to be in here. Get out. And the people said to her, who are interviewing me, go check the schedule. Go to the media room, you'll see that we made some last minute changes. And she said I'm autistic and I can't, it makes me get very I have to engage in mysteries I can't deal with change. So you just need to leave so that I can do my interview. And she was like, I felt like she was kinda, let me show you that I'm on the spectrum and maybe that will be a way that persuades you socially. And the people interviewing me said Dr. Siegel, you're the autism expert. What should we do with this woman?
Alisa Minkin:I mean it, it's a balance, right? That we can accommodate a lot and understand a lot, but it's a two-way street. This is what I love about Temple Brandon, by the way, is she really is the role model
Bryna Siegel:Yeah.
Alisa Minkin:understanding it, being a sensitive to your artistic differences, but learning how to function in neurotypical society.
Bryna Siegel:Yeah. No, she, and she has a very, she's it makes her very practical in a
Alisa Minkin:Yeah.
Bryna Siegel:way.
Alisa Minkin:Yeah.
Bryna Siegel:giving a talk on a panel with Temple, and as we all know, if you go to an autism conference, there's usually many more women attendees than men. There was a break and there was a big line for the ladies' room. And Temple walked up with a sign that said, ladies and a roll of Scotch tape, and she taped it to the door of the men's room, and she said, all the women shouldn't have to wait. No one's using the men's room. There's a men's room, one floor down. If a man comes, they can go one floor down and the rest of
Alisa Minkin:I love her. I love her.
Bryna Siegel:right,
Alisa Minkin:amazing. She's really amazing. I can't believe we've been talking this long and we haven't talked about the politics of autism. How did that happen? That's what your book's about. I have to give you a chance to talk about that. I'm gonna give a quote. The politics of autism are the slant that filters information and provides us with what we will probably like. And this has led to misguided priorities that have left behind the real needs of individuals and families living with autism. This is really important, so we need to talk about this.
Bryna Siegel:Okay. Absolutely. Great. Yeah, I think that one of, one of the things that is a big issue in our diagnostic clinic that kind of starts to get to this is that, know, when do we know what we know? We, if we see an 8-year-old child with autism that's had a BA since age two and they're still not reading they can recognize, 18 out of 26 letters of the alphabet on a good day. And they do know their colors, but they still get. Confused counting to 20. Do we continue to beat that horse or do we look at what that kid does well and think about how do we work with that? The kid may be totally interested in transportation and knows the names of all kinds of transportation vehicles and knows how they function and what their uses are. And for me, I would rather see that child parents thinking about kind of apprenticeships where he gets to do stuff like that. There is a point at which clinicians can see where a child is headed. And for me, and I always tell my staff, it's not for me to know and keep it a secret from the parents or to shine them on and say he, his IEP we won't, you won't have to discuss for another, he's 14. You won't have to discuss until he is 16 whether he's going to get a certificate of completion from high school or whether he'll get a a GED equivalent if he really doesn't know all the letters of the alphabet yet, he's on a certificate of completion graduate, and we need to start forming a picture of he can have a good life, but what is he gonna do? And what could you start doing now? Because I actually think that it is. Child abuse to continue trying to teach that kid the alphabet in most contexts. That if I can't learn something, why are you gonna beat a dead horse? Why are you going to insist that I. Learn, learn trigonometry. I don't wanna learn trigonometry. I don't see any point for me to learn trigonometry. And you could lock me up with some people who are gonna teach me that. And I would be unhappy and I would have negative behaviors and I would not try to run out of the room or be physically aggressive with the trigonometry teachers. But I would take my mind elsewhere until this was over. And we have kids that do that when you're trying to teach them the letters of the alphabet, six years on to teaching them the letters of the alphabet. You're providing them with stuff that they, it's not where they're wired up. So let's pay good attention to how they are wired up and let them flourish in, in that domain not beat a dead horse. And parents don't wanna say, my kid can't read, but there are kids who can do some really good things who don't necessarily need to read. I sometimes, I'll use it as an example. We actually did used it as an example in the clinic the other day, that if anybody who's traveled to Mumbai in India, there are these guys who have been studied by FedEx and UPS who deliver Tiffin lunches to office workers in Mumbai. And their wives cook their lunches, put them in these tiffin boxes in a cloth stack that has some markings on it, and somehow they get picked up, they get. All bicycled to a certain location, they get sorted and everybody gets their right lunch and can come home with their empty tiffin box. These are illiterate people doing this, it just goes to show that, oh my God, my child is going to wallow in a life of misery if he can't learn to read. The question is how do we help parents feel good about saying what else should I be doing to help him develop his relative strengths at this point? Not that you failed your child by, you should have had him in a different school, or, know, you should have had more a, b, a before he started. you could say all sorts of things. And as you were saying earlier, you don't have to encourage a parent of an autistic kid to feel guilty about their parenting. And and because it's so easy to do, I think we as clinicians shy away from anything that might make the parent feel guilty, but we shine them on to what, what is happening instead. And then you have the, the little little yellow school bus metaphor. The parents of the 18-year-old saying, what am I gonna do next year? The little yellow school bus isn't gonna come to my house anymore. What is he gonna do all day? And it's tragic. It shouldn't have come to that.
Alisa Minkin:It would be 22, I believe, if you're not getting a high school diploma. Some of these kids, by the way, are able to meet the criteria for a high school diploma at 18 and yet not utilize it because they just have, they have good road skills and they're being taught the test. And even those kids don't necessarily do well after high school, they graduate to the couch.
Bryna Siegel:A Absolutely. And there's a whole group of them and, the parents look at the, what you just alluded to, the 18 to 22-year-old transition to adult living program. And they say the, at that and like a lot of the kids in their nonverbal and my son reads and maybe he mainly reads manuals for video games, but he reads I'm not gonna put him in a class with people who don't read and who are, learning to. Put their dirty dishes in the sink. There are kids like that and they absolutely need it. We should, they shouldn't be like in high school and they shouldn't be 19 years old before we start teaching them that. But yeah, so we don't have a place for the guys who and I have a lot of'em, who in California we have a lot of disability learning centers in our community colleges, and the kids take courses in community college. Typically they start off, they take four courses, they drop three, they marginally pass one, they take it again. The next semester they take two more courses, not four this time, but three next semester they take two after a year, they've passed one course fully and they are at home on the couch. And and it causes parents to infantalize them to really like suddenly crash their expectations. I have one family that I've seen that they have three kids like this, and of them has been in community college for 10 years and the mom spends her day driving them back and forth to community college because they take different classes on different schedules and picking them up on different schedules because. Having them take the bus or make their own meals when they come home is, it's like she's running a group home and she's really trying hard to get them to, if only they could finish these courses and maybe they could work here, work there, but they need a new plan. And it's really hard and there's not resources to help parents make those plans. There's only resources for the ones who end up not needing plans like that. And I think that the community of their no longer, the broader phenotype kind of people who are now embracing the autism diagnosis are actually pretty insensitive to the fact that there's a bunch of people like this.
Alisa Minkin:That was part, possibly the part of the book that resonated the most with me as the parent of an autistic adult. It is so hard when those school services end, but also the school services are geared towards the academics. And I don't understand, not everybody has to go to college. Even with typical kids, they're talking more and more about the high unemployment rate of typical young adults. Those without autism, the ones with autism, I think it's 90% are unemployed. It's insane. Even on the higher end,
Bryna Siegel:right? Yeah.
Alisa Minkin:right way, underemployed.
Bryna Siegel:in, yeah. Or they are in volunteer positions or they only are paid a few hours a week. It's tragic and I think there's a lot of, things that there all kinds of jobs and I'll suggest some of these jobs to parents. I've had young people who, work in a group home for severely intellectually disabled people because they need someone to them get their shoes and socks on, help them get in and out of their wheelchair, push them when they're in the community, in their wheelchair get them on and off of a kneeling bust. And they can do those things and they feel proud that they're doing something functional and they don't have to do it 40 hours a week for it to be a successful job. but they feel like they're helping someone else and they're aware that I have a disability. And boy, a lot of people have helped me and I actually feel really good that someone less able than me, I can help. I have young women who, you Work in assisted living facilities where they can just sit and be a companion to some older woman with dementia and hearing loss and just sitting next to them being company. And, maybe doing something you're just with them is, it's a mitzvah, it's a good deed. And they understand that they're going there to help Mrs. Today. And maybe they take her for a stroll around the grounds or whatever, but those are jobs that people with autism and significant adaptive pro problems of their own can and should be doing because society has a need for them. But we don't encourage that. That's not a career, it's not a job identity. And I think that, we need to get back to the thinking where, you know. If we think about our great grandparents know, they would have five children and they maybe would have one who they said he's gonna be the scholar. He can go on and study further, but this other one needs to come and help me in the shop. this other one, we're gonna send them to uncle so and so who has a farm because he can collect eggs. But, it was like, it was just that was the real politic of dealing with the fact that you had kids with different capacities and we don't have a real politic for that anymore.
Alisa Minkin:No, we think college for all, and this is a problem not just. The autism rules. Remember how you said in the beginning of your book that the issues with autism are microcosm for larger issues of society? This is what this article was saying about the 60% unemployment rate in young people after college. They were saying about someone who was an immigrant and they wanted their child, to have this amazing job. And they said, HVAC in pool and whatever, and she said, no, I want my kid to be the kid at the pool in the backyard not building the pool. We have to deal with that. It's a reality that people have these hopes and dreams for their kids, but
Bryna Siegel:sure.
Alisa Minkin:have to be real about everybody, we have to be real about kids with autism too, to help them and we have to build on their strengths. You mentioned earlier building on strengths, and that's unfortunately not what we're necessarily doing
Bryna Siegel:No,
Alisa Minkin:in the school system.
Bryna Siegel:And it's very hard to train young clinicians to feel like this is gonna be part of your job. Not just telling the parent whether or not their kid is autistic or their score on seven different standardized diagnostic measures you've administered. But what does this mean for how your child can succeed? And, I think part of the reason we don't have more research on treatment outcomes from different kinds of career paths or different kinds of interventions or kinds of training activities of daily living is because we're ashamed of the fact that's really what we should be recommending for some parents and telling them that maybe thinking that your kid is gonna go to college, I'll let that be someone else's job. And I think it's very hard for educators. I've done a lot of work consultation to school districts and I'll work with special ed directors who will take me to a high school class and they'll point out kids that they've known since they came to the school district when they were five. And almost always there's oh my God, I thought she would be doing so much better by the time she was in high school. Because I remember when she was five, she, she had memorized 85 Sesame Street songs. And. It's like teachers. The problem is that teachers by and large only have a cross-sectional knowledge of kids. They know everything about first graders or they know everything about second graders they really don't know developmentally what the kid is gonna look like five or 10 years later because they're not a high school teacher or middle school teacher.
Alisa Minkin:And who could be the person to help the parents with this?
Bryna Siegel:I think it should be part of people who do diagnostic work in autism. And I think that one of the things is that, and I talk about this in the politics of autism, is that we have not created a medical home for kids with autism. And that, as as a pediatrician, a medical home, we usually think of it that's for the diabetic kid or the kid with cystic fibrosis. They absolutely need a specialist pediatrician that before we make any diet changes, before you, they, you send them to summer camp where there's ragweed everywhere. You're gonna need to touch base with your medical home to see if that's a good decision for your child. And if there's their insulin metabolism becomes destabilized, you need someplace to go back. Not just saying, what do I do now? And kids with autism need a medical home. So my experience. None of the diagnosticians I know do medical home. They're not trained to. We say to the parents of the littlest, your kid is 23 months old, you need to come back to us he turns three and enters the school system. Or before he turns five and enters the school system because I don't know yet. We have no response to intervention data. Your kid has received nothing. You just got the diagnosis today. And a way it's your low point and anything do from here is only uphill. But I don't know what that trajectory looks like until I see him again. And then we can start fine tuning what kinds of interventions are gonna be more specific to what we see gets learned easily and what doesn't get learned so easily. And we've never trained autism clinicians to do this, but we needed a medical home for kids with autism.
Alisa Minkin:We needed to pay. Okay. Developmental pediatricians could do that, and
Bryna Siegel:Yeah,
Alisa Minkin:not. They're becoming the dinosaurs because they're not getting paid as well as even pediatricians who are some of the lowest paid clinicians and pediatricians do not have time to do this.
Bryna Siegel:No. And there, there are no CPT codes for it. I, I, as the head of a agency that sees autistic kids, I fight with these people who, tell me that there's no CPT code for that. You don't, right now I'm in a battle with Medi-Cal about why do you need to get a developmental history before the kid comes in? We need to know what the parent thinks is wrong. We need to think what their understanding is of this behavior and what they're trying to do about it. And we, where it came from. And we need to know what level the child is at, so we know what measures we're gonna use with this child. You need to know. It's not part of let's sit down and try to give you a whisk. Wait, you don't have enough language. Let's give you a wsi. And. you can't use that code to do that there, it's basically, some of it is the insurance companies. If we limit the number of codes that describe the activities of support, then it's, we'll have fewer activities of support going on and it'll cost less. And that's
Alisa Minkin:It's more than that though. It's also the whole way, the reimbursement. Set up is to give more money to procedures and medications and stuff like that. And not to spend any time talking to people and counseling.
Bryna Siegel:Right.
Alisa Minkin:the CP two codes in the world. If they don't pay, what good are they? No margin, no mission. It's, this is where politics has to happen on a whole higher level. This is really, beyond what we can do. We could go on forever. I, there's so many things we could have talked about that I wanted to talk about, but we can't. This is a lot. Do you wanna just gimme a few if you don't mind. Thank you so much by the way. Do you wanna give me a few take home points? Just a few things you want people to leave with. Could be for parents of kids with autism. Could be for everybody.
Bryna Siegel:I think that what's going on now at the federal level is a travesty. I think that Kennedy is committing crimes against humanity by discouraging parents to be suspicious of vaccines. I have had one mom who took Tylenol during her pregnancy and was crying when I told her, I said, remember, this is the guy who told, took, told people that maybe bleach would cure COVID. So that made her stop crying. But that, that we're gonna have a lot of dead kids who don't get vaccinated. We're gonna have damaged kids who don't get vaccinated. Kennedy is completely blind to the spectrum of autism. He's completely blind to the medical research that's been done, and they're trying to. Turn the FDA into a an echo chamber for whatever truth social would like an echo about this week. So I think that's a very dangerous thing that's going on in for parents of kids with who are at risk to have disabilities in their children. Both physical and cognitive and autism. I think we had really good evidence that vaccines didn't cause autism. And I thought that the nail was in the coffins. Silver steak was in the heart of the vampire on that one when the class action suit on VA at going towards vaccine court disintegrated because the key expert witness for the plaintiffs in that case was ruled not to be an expert witness by a federal judge. And all the ones that the drug company who had put on for that case, I, including myself were considered to be experts and that's who Kennedy has as the head of his commission. He fired all the vaccine experts and brought in his own vaccine experts. And so that's very dangerous what's going on right now, but it's also. Yes, question.
Alisa Minkin:No. Yes. But what's, what I'm not hearing, and that's really important, is the reason they're able to do that is because of the mess that was COVID and the lack of effective communication about public health, including vaccines and the attitude, I think that we're just gonna tell you what to do and you're gonna listen to that. And so I was hoping after COVID, there would be a thinking about what we did wrong and trying to do things better. And instead we've just doubled down on our polarization. And so what you're saying, I believe is true, but I also feel for more and more parents that are getting skeptical because they don't know who to trust. What RFK is doing with his minions is he is building on that distrust. He's taking advantage of it, but it was there already for the taking.
Bryna Siegel:Oh yeah. And he's building on it and yeah. And in some ways you would say he's a he's a good politician. He knows what you can exploit in terms of people's beliefs
Alisa Minkin:there's a vaccine group called Vaccine Talk, which has almost a hundred thousand members. And this group is a chance for people who are vaccine hesitant to ask questions without being judged and be surrounded with people who can give them accurate information. It's amazing.
Bryna Siegel:That's
Alisa Minkin:It's
Bryna Siegel:No,
Alisa Minkin:not an echo chamber.
Bryna Siegel:it's good, it's good to know that exists because I think that, so let me get back to your, the question you did ask me, which is that I would like to see an acknowledgement that we need in our society for kids with autism, A way for them to succeed as adults. We need more vocational education. We need more vocational testing, we need more. Let's take them off of pure academics and put them onto teaching them to tile, wire pipes working landscaping. Let's see what they enjoy and let's, and then therefore grow their ability. And my motto in the politics of autism, talking about what I'd like to see for transitional age youth is start low, but go as far as you can go.
Alisa Minkin:What do you mean by start low?
Bryna Siegel:In other words, parents who, kid is failing outta one community class after another because they can't get to the prerequisites to take any of the video gaming courses where you have to pass math prerequisites first. They shouldn't be doing that. They should be starting low if they like, maybe they, I've had some who, like they work at a plant nursery and they learn that there's all these Latin names of plants and what the differences are and they can the new plants that are delivered and shell them in a very competent way so that knowledgeable plant buyers can find things that they might even be able to talk to the non-no plant buyers about the differences. And then they, they move up in that world of work because they love the classificatory nature of plant species that they should be doing this and not laying at home on the couch because they've five times failed the prerequisite courses that would take'em to the holy grail of taking a video gaming programming
Alisa Minkin:Which is not realistic for a lot of people. And it's the same thing for typical kids. It is exactly the same thing. We used to have vocational programming. And you don't have to track people where you're only for vocational or you're only low this, or you're only high. This, we just need to be realistic and honest and open our eyes to what this kid is passionate about, what their strengths are, what their weaknesses are for all kids. This is generalizable to all kids.
Bryna Siegel:well, thi this is a coastal thing, I think more than the rest of America. So I did a, for a drug company, I did litigation support. Long story, I ended up evaluating a boy in Bowling Green, Kentucky. And he was borderline IQ kind of guy.'cause I, and, in and in high school, in Bowling Green, Kentucky, you do one semester of learning to lay tile, one semester of learning to attach pipes to one another, one semester of learning how to cut lumber, et cetera, et cetera, et cetera. And, said I liked the tiling and I have an uncle. And he, I told my uncle says this summer you come work for me. And we'll, we'll get you, we'll put you to work. To me this is much better than a kid with borderline iq mom trying to get him to go to community college till he is laying home on the couch and they need mentorship. Start low, go slow. Let uncle have him just carry boxes of tiles.'cause someone's, probably the big strapping 19-year-old is gonna be better carrying boxes of tiles than the tilers who are already 35 years old and have back problems. And then he can start. Laying some tiles and then he can start grouting some tiles and then he can start cutting some tiles. Take him as, let him start low, go slow, but then take him as far as he can go. And if he ends up working for his uncle till he's 35 I don't see that as a tragedy because that young man will know he has a confidence to do something.
Alisa Minkin:So I really wanna thank you so much for doing this with me. I have so much more that I'd love to talk about with you. Maybe we can do another one of these because I think we just scratch the surface of this. So thank you so much.
Bryna Siegel:So I just wanna say at the beginning you did make one error which is when you were talking about my credentials, I was involved in the DSM field trials for three and four, but I was a field site coordinator. I was not the head of the trials. That's a big
Alisa Minkin:Thank you.
Bryna Siegel:was not me. I I was a field trial investigator for one of the sites that helped standardize the DEC definition of autism three R and DSM four.
Alisa Minkin:Thank you so much for correcting me on that. Again, thank you so much for doing this with me.
Bryna Siegel:Sure. No, it's fun. You're doing incredible work yourself. This is really important what you're doing, so I'll look forward to seeing how it looks
Alisa Minkin:thank you so much.
Thank you for listening to Kids Matter. Raising Healthy, happy Children Takes a village, and I'm grateful you are part of ours. If today's conversation resonated with you, please share this episode with another parent, grandparent, teacher, or anyone who cares about kids. Together we can build a supportive community our children deserve. I'd love to hear from you. Share your thoughts, questions, or suggestions for future topics at Kids Matter podcast@gmail.com. With no explanation for your voice truly matters. Until next time, keep advocating for the children in your life because kids really do matter. They are our future. I'm Dr. Elisa Minkin and this has been Kids Matter. Please note that while I am a pediatrician, I am not your child's ped. This podcast is for informational purposes only and does not constitute medical. For any medical concerns or decisions. Reach out to your child's healthcare professional.