#128: Diagnosing Autism During COVID19 pandemic | Interview with Dr. Catherine Lord
Before the pandemic, Dr. Lord was able to perform long and thorough evaluations of children to test for autism. In addition, she was able to coordinate backup services such as speech and OT. The COVID-19 pandemic shut that down quickly like it did so many other things. Patients, of course, still needed screening, and many wanted the ADOS test. The ADOS test was very ineffective at this point in the pandemic. With everyone being masked, the results were inconclusive, which wastes precious time that children could be using to get services.
Dr. Lord was able to work with her group and create a shorter, twelve-minute evaluation, that was able to screen them. The evaluation, BOSA (Brief Observations of Symptoms of Autism), was done at home with the parents, they sent a video of it to Dr. Lord’s team, and they evaluated it and came up with recommendations. It doesn’t completely diagnose autism, but it can give parents a starting point and something to present to insurance if they are waiting on that.
Even with a global pandemic, Dr. Lord made it possible for parents and children to continue down the path of an autism diagnosis and treatment. Hopefully, as time goes on, the wait for a diagnosis and therapies will lessen, and children will be able to continue down the path that is best for them.
Dr. Catherine Lord is the George Tarjan Distinguished Professor of Psychiatry and Education at the Semel Institute of Neuroscience and Human Behavior in the David Geffen School of Medicine at UCLA. She is a practicing clinical psychologist whose primary focus is autism and related disorders across the lifespan from toddlers through adulthood. Her research and clinical work have involved the development of diagnostic instruments that describe individual profiles of skills and weaknesses and carrying out longitudinal studies from age 15 months up to 30 years with the goal of identifying protective and risk factors that influence milestones of progress over the years. She is a member of the National Academy of Medicine and a fellow of the American Association of Arts and Sciences.
- Which demographics are most likely to fall through the cracks and why?
- Why are the numbers of autism diagnosis increasing?
- Why waiting lists for services are growing.
- How parent involvement affects the effectiveness of autism treatment.
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— MaryBarbera.com/workshop (Sign up for a free workshop online for parents and professionals)
— #078: Autism Success Story with Michelle C.
— #093: Autism Detection: A Summary of Dr. Ami Klin’s Autism Work
— #114: Diagnosing Autism: An Interview with Developmental Pediatrician Dr. Cheryl Tierney
— ADOS Test
— New York Times: Diagnosing Autism in the Pandemic
— BOSA Training Video
— Patterns of Developmental Trajectories In Toddlers with Autism Spectrum Disorder by Dr. Catherine Lord
— Dr. Lord at UCLA
— Center for Autism Research & Treatment
Transcript for Podcast Episode: 128
Diagnosing Autism During COVID19 Pandemic | Interview with Dr. Catherine Lord
Hosted by: Dr. Mary Barbera
Mary: You're listening to the Turn Autism Around podcast episode number one hundred and twenty-eight. Today, we have a really special guest, Dr. Catherine Lord, who is a very well-known researcher in the autism world since 1970. She is a professor of psychiatry and education at UCLA. And today we talk about all kinds of things, diagnosing and treating autism before, during, after the pandemic, why the rate of autism increased, why the waiting lists and the power of parents to learn more and to help kids throughout childhood and adulthood. We talk about her longitudinal study her and colleagues are doing with kids from 15 months of age, all the way up to 30 years of age. And she's got some really good results already. So let's get to this important episode with Dr. Catherine Lord.
Welcome to the Turn Autism Around podcast for both parents and professionals in the autism world who want to turn things around, be less stressed and lead happier lives. And now your host, autism behavior analyst and bestselling author, Dr. Mary Barbera.
Mary: So, Dr. Lord, thank you so much for taking time out of your very busy schedule to join us today.
Dr. Lord: It's great to be here.
Mary: Yeah, so I have been following your work for over two decades in some capacity, but I don't know the answer to this. And I usually start my interviews the same way as those listeners that are familiar know is can you describe your fall into the autism world and how you got interested and involved in studying autism?
Dr. Lord: I was an undergraduate at UCLA, and so I was about 19 years old and I took a course from Ivar Lobos that was supposed to be about developmental psychology, but actually turned out to be really behavior analysis with autism. And I was just so inspired by the things that he said, some of which I think are true and some of which are not true. But I was just I just became part of his army of predominantly undergraduate women who are determined to learn discrete trial format with the idea that we could teach anybody anything. And so I worked with two kids. They were kids that had been brought back from institutions to live in the neuropsychiatric institute. And so they got, I don't know, ten of us a day for forty five minutes. And so I saw these two little guys and one just made enormous progress. I mean, I think he probably could have talked before, but it was in an institution and sort of stopped. And then he got all this attention and he just blossomed. And another boy who I spent literally over a year trying to get him to say, "buh" in order to get a Frito . But I learned so much from them. I mean, the little boy with the "buh", I really thought, what are we doing here? But in fact, I started cheating. He loved water. And we would go to the bathroom, and I would teach him how to wash his hands and I would teach him how to get a paper towel. And we would race down the hall and go stop and go and as brakes. And I mean, I learned a lot from that. And so when I finished that, I was really thinking, know, this is amazing. The techniques are amazing, but this doesn't work with everything. It doesn't work with everybody. What else can we do?
Mary: So I went. And what decade are we talking? Like the early 80s?
Dr. Lord: No 70s. So that was 1969. I started with them. I graduated in seventy-one. Oh wow. So that was my first exposure to autism and then I really was like, I need to learn something else. Not I wasn't avoiding autism, but I was just like I want to learn how the mind works. I want to learn how kids think, how do they learn social behaviors. But in my second to last year graduate school, I was living with my husband, who was teaching at Dartmouth up in New Hampshire, and I got a part time job as a school psychologist for a program. It was when ABA was just starting, and they had located this program for any kid with any special need. I had kids from two to eight years of age and in this class and I was supposed to be the psychologist and the teacher didn't show up the first day of school. So I ended up teaching this class. I mean, when I look back on it, it's horrifying. But I just used everything I knew how to do. And about half the kids at autism, vary, all degrees, from very severe to quite mild. And I just loved those kids. So after that, I decided I wanted to do an internship. I knew I had to do an internship and I ended up going to teach, which is an autism program in North Carolina. And again, it wasn't that I only wanted to work with autistic kids, but I just was so impressed with how the therapist worked, the fact that they worked with families, the fact they did research and clinical work, and community is in the school and all all of those things. And I didn't see that in a lot of hospitals that were much more old style of the families come in and you do something with the child and say goodbye. So that was the start.
Mary, Wow. And we're going to talk about your work now. So we'll just hold up on that, which is, again, fascinating. Your background is fascinating. You know, many of my guests on past podcasts had fallen into the world of autism like I did finding out about the Ivar Lovaas study of nineteen eighty-seven. The classic study in my son receivedLovaas type therapy, ABA therapy when he was three and then switched to a verbal behavior approach in about the year 2000. And that seems to be a lot of the trajectory of my guess that are even more so in the verbal, behavior, practical application field. But. Let's talk, because it is fascinating that you were around back in 1970 when the rate of autism was thought to be one in ten thousand. It was very unusual even to get kids out of institutions with that diagnosis. And so what do you say to people that ask, how do they go from one in ten thousand to one in about fifty or one in five hundred? My son Lucas was diagnosed in 1999 to one in fifty. How does that happen?
Dr. Lord: I don't know. I don't know. I mean, some of it is we have broader conceptualizations watchers. So I'm sure that some of it we I mean there was a point with Lovaas, he wanted us to find children ideally who had some skill at age level, which he doesn't talk about very much. But we were supposed to try to see if the kids had some skill at age level. Some did, some didn't. He didn't do very good assessments, but he didn't. And so he had kids with more skills than you might think. But I think that that now we're aware that there are kids who don't have intellectual disabilities, who have autism. I also think we're aware that there are kids who were treated just as if they had intellectual disability and not autism and nobody bothered to look. I think that still goes on probably lots of places and also probably more with racial and ethnic minorities that some of it.
Mary: It's been proven that. And it's in my book, it's in I did a podcast episode on the work of Ami Klin, who's another international expert in the field of autism research. And his research and with colleagues shows that if you're a white child, eight-year-old, your chances of having autism plus intellectual disabilities is twenty seven percent. I might be off by a percentage or two if you're an African American child, eight-year-old autism plus intellectual disability is almost twice the number. And then Hispanic children are right in the middle. So there is I agree, all those things better diagnosis, bigger, wider range, less stigma, more like you got to get on this. You got to get a diagnosis, insurance coverage for kids with a diagnosis of autism, better treatment. But it still doesn't, I don't they don't cover everybody. And I still some people say, well, it's over diagnosed. I don't see that because every child I personally know with a diagnosis, there's a child that doesn't have the diagnosis that I think should.
Dr. Lord: I agree. I mean, I think there's been this summer I've had a rash of girls, of teenage girls that somebody has thought might have autism, who I think we're just incredibly anxious and depressed and I mean, did not suddenly become autistic. They were just socially awkward and very unhappy. But I absolutely agree. I think it's more common to get missed than to get over diagnosed. And I agree. I don't know. I don't think those things account for everything. But what on earth is the difference? I don't know.
Mary: Well, and just like because I was interviewed for my book on radio shows and TV shows and I was asked this question a couple of times. And, you know, just like the rate of everything is going up, cancer, diabetes, obesity. And many consider autism to be an immune condition of some sort. And so, you know, the actually the radio interviewer actually said like first question out of the gate, like, what about peanut allergies going up and autism going up? And I'm like, oh, buddy, I'm glad I'm on radio. And I'm like trying to, you know, I mean, I'm certainly not an expert in the immunology of autism, but I also don't think it's just better detection. I remember being at our local pool when Lucas was little and it happened to be an evening and six kids were in the baby pool. And four of them, including my son, had a diagnosis of autism, but they looked typically developing because they were three or four. And I'm like a you know, people say there's better you know, there's overdiagnosis. I'm like, yeah, no.
Dr. Lord: I agree. Yeah.
Mary: Ok, so is that why even before the diagnosis. Before the pandemic, which we're going to talk about the pandemic and how that's changed diagnosis and treatment in the in a not good way. Before the pandemic, was it just because now the rate is through the roof and people are waiting in lines? And is that primarily the cause of these waiting lists, which are nine months to two years like around the country?
Dr. Lord: I don't know. I mean, I think it's complicated because I think the waiting lists and I think you probably know this just from firsthand experience, the waiting lists are not it's not that the waiting list for everything is huge. The waiting lists for really good services is huge. And I think part of that is our health care system. I mean, a lot of I worked in a number of hospitals that have almost no developmental behavioral pediatricians. They have almost no child psychologist. And I mean, we were in a situation when I was at University of Michigan where we were we had a separate clinic that was funded through the graduate school. And the medical school was very interested in having me because I'm a researcher. But they didn't want our clinic because they said you'll lose money, you know, and you're going to attract more and more people. And for everyone you attract will lose more money because you can't build at the rate that it costs. And insurance doesn't pay. I mean, now insurance is better. But I think that our health care system I mean, if they needed a thoracic surgeon, they would get another thoracic surgeon. They wouldn't say, oh, my gosh, we'll lose money on this person. But for autism, it's like we've got to keep that small. And there are exceptions to that, primarily children's hospitals that do not live on their fee for service. They live on donations. So I think that's a huge problem.
Mary: And they have waiting lists.
Dr. Lord: They do. Even those have waiting lists.
Mary: And we will link I did an interview with Dr. Cheryl Tierney, who is a developmental pediatrician, and we talked about the waiting lists and why it's so bad. And one of the things that I learned in that in that interview was that being a developmental pediatrician is a new board certification as of like 2005 and there's only seven hundred or eight hundred certified. And so when I found that out, I mean, literally, I had like an open mouth like, oh my God. Well, that's part of the problem, because you do want to go to a developmental pediatrician to, you know, if cost and access is no option. I mean, I would prefer that over other specialties. You might miss other things, but so we can link that in the shows and anything we say we're going to link in the show notes. This episode will be one twenty-eight. So it'll be MaryBarbera.com/128, to get to the show notes. So you might be listening on Apple podcast or Spotify, but you can always go back to the website to check the show notes. So. So then the reason I really was excited and reached out to you actually a few months ago to get you on the show is I read this great article in The New York Times called Diagnosing Autism in the Pandemic by an M.D. Dr. Perry Class. And you are quoted in here as basically you are you are actually evaluating some kids in your backyard. So can you describe, like a year ago what was happening in March and April and May of 2020 and how that changed your whole world? I would imagine.
Dr. Lord: It did. I mean, I think that before then our what I do for the most part is relatively long evaluations, meaning like three or four visits. And then then what I love to do most is to provide backup services. So I am not your the primary provider, but I will help group coordinate groups like a group that has ABA people and a speech pathologist and OT. And if we can get teachers in there, I will do that. I will check with parents. I'm happy to help parents get started if they're not in a more if there's not something that's easier for them to do or come back to them, come back to me. Actually, if something new comes up and I know their child. So that's what I do. And typically, at that point, I would have seen people three times in the office and often once just the parents and then the next time with the child or young adult or not so young adult and then again with the parents and a little bit differently if they're adults, actually, because sometimes. They want to be seen by themselves, depending on what their level is and what they're interested in. Well, that just came to a screeching halt. I mean, we couldn't do it. And so initially the question was, well, what can we do? And the other thing I was getting was lots of questions about the ADOS, which is this forty-five-minute-long interaction. That is very it can be adjusted a lot. But the idea is that there are about ten tasks that somebody uses in order to get to know a child or an adult with autism. And the tasks are different depending on the age and the language level of the child. And the parents are there usually. So I was hearing a lot because I was one of the developers for the ADOS because sometimes insurance is asking for the ADOS. And so people were really going berserk saying, what can I do? And we tried it out a little bit just with the kids that we do. And we said, really, you cannot do this with both of you masked. I mean, you're making judgments about facial expressions and eye contact and vocalizations. And even when you can see something, you're not seeing everything. And the kids at that point, if you have someone masked, they're looking at you like, what is the matter with you? I think that's changed somewhat, but it's certainly in those days. So what I decided to do initially was the first thing we did was our group got together and we've been working on a way to observe social behavior and communication briefly. So just for twelve minutes that we code, watch the videos. And the idea is to have codes that are sensitive to change. So not diagnosis, but things that people could get better at. And there are different sets of what you do for those twelve minutes, depending on what the person that you're the child or an adult, you're evaluating what they might like to do. But the idea is this could be done by parents, or it could be done by the therapist that seeing the child already, as long as you're comparing the same person before and after, this is just a measure of change. But it occurred to our group, look, maybe we could take what we've learned about this, like what would you want to do in twelve minutes? And maybe we can create a version that kids or adults could do at home with their parents. And that could be done. And we could just send people materials and they could send us videos. So we jumped in and created this thing and we got permission from the publisher who basically owns the ADOS. So it is not mine, but they gave us permission to create this thing for free. So that was called the BOSA, which just stands for brief observations of symptoms of autism. And we wanted to be really clear that this is not perfect. I mean, the ADOS isn't perfect. Nothing's perfect. But at least if people were waiting for insurance purposes to get services, we can say here's something that we can justify to your insurance company that is roughly comparable to an ADOS. And we've shown that actually in about 90 percent of the time it works. You can say this child has autism. Now, we haven't tested it with kids who have a lot of other disorders, but not autism. But so that was something we just jumped into. And we created these online trainings. We had ten thousand people come to these trainings and partly, they're free. But partly we just wanted people to have something to do. Then Boza.
Mary: Then if the BOSA and the training that was recorded is that's something we can put in the show notes.
Dr. Lord: You can actually, I'm I do not remember the website, but I can get it for you. OK, we get that.
Mary: Because like I would be interested in watching that for sure. I know many of the listeners would too. And I do believe I have a video blog on the ADOS. I am trained in that. It's the autism diagnostic observation schedule. I'm also trained and certified in the STAT, the screening tool for autism and toddlers. And I do talk about the STAT in my new book and in my online courses because in my, in maybe. Are you familiar with the STAT? I am, yeah. And to me, as back when I started using the STAT pretty regularly, it was to me many ADOS that I could do within homes without a sterile clinical environment. And yeah, so we had some success with the staff, but I would love the BOSA and then also the assessment forms and stuff in my book that I created are based on a lot of that, that, too, so that's really interesting and I remember Dr. Tierney mentioning that some of there are some different tests that are valid online only or there's adaptations that you have to make to some assessments online. Is that is that true or is?
Dr. Lord: Yeah. I mean, there's a program called NODA where a parent can sign up for it. It's not free, but you, it directs you to collect videos of interacting with your child at different times. And then you send those videos in and somebody scores it using pretty much ADOS scores and then gives you a report. There's also the ASD-PEDS, which was developed by Zach Warren and the group in Vanderbilt that does something similar like that just for little kids. But where you create you take videos of your child, and someone scores it. And then there are questionnaires. The problem with the questionnaires, which is really to some degree. Well, it's a little bit the problem with the STAT. The STAT is wonderful, but it works for a particular age and level of child. If the child is too low, it doesn't work. If the child is too high, it doesn't work. The questionnaires are somewhat similar because the specificity that is the proportion of kids who are misdiagnosed as having autism tends to be terrible on the questionnaires. That is, many, many kids, except for little kids, tend to come out autistic if they have other problems. So that's where you just have to be careful. But it doesn't mean that it's not a place to start to at least look at. And with little kids, I think, and or kids that are who are behaving more, actually at a preschool level under age three, then you're looking at very often very specific things like social communication, drawing attention to those things. And that's much less problematic to diagnose.
Mary: Right, right. So you were literally at some point because it says that in the article you were quoted, you are literally assessing kids in your backyard.
Dr. Lord: Yeah, eventually we started our clinic opened up, and what was happening was the parent interview was Zoom. And then people were seeing kids, but they had to wear, you know, like one mask and then the plastic thing over it. And when I saw that, I was just like, oh, for goodness sake, you know, this is I mean, this is noble, but and they were allowed to do the BOSA by having a family come. And for fifteen minutes they could put the family in a pre-sanitized room. The parents could take their mask off, the kid could take the mask off and they could video it and then they'd have to put the masks back on and come out. So. It occurred to me that I have a big backyard and a porch that we could sit with masks on, we could turn on the computer. So we're technically doing remote and we could actually interact with each other. And then I could ask the parents to take the mask off, their mask off, do a BOSA. But we didn't do ADOSes or we basically just did ADOSes with masks, did not score them, but got the information from it. So we just did more things and that I mean that helped tremendously. And then we would do the feedback.
Mary: So you were really thinking out of the box, which is very encouraging to see that. I think a lot of researchers were thinking out of the box. And I know at least one researcher who I wanted to have on the show was kind of also in a state of financial crisis because, you know, the hospitals were in a state of crisis and shutting down things and shutting down surgeries and, you know, grants were kind of in limbo. And did you also have financial stress along with it in terms of your research programs?
Dr. Lord: What we have been hurt by is for the BOSCC, the one that looks at change. We need to see kids before treatment and after treatment. And we were literally halfway through a study when covid hit. And so we didn't get the after treatment. Now, what we're doing is we're working with a lot of people who are doing Zoom based treatments and we are mailing kits to the parents. And then they mail them back and then we mail them back again. I mean, and that's expensive. But that's I mean, we just felt like we couldn't just wait for this. This could go on forever or not hopefully not forever, but it could certainly go on. It's gone on for a long time,
Mary: A lot longer than any of us thought it would. That's for sure. And another, as you're talking about looking at them before and after. I do want to link another one of the interviews in the show notes it's in its session number seventy-eight with one of my online participants, Michelle. And she actually is in Chapter eight of my new book because she got the diagnosis for her two-year-old right before the shutdown. And so she got diagnoses the little girl on baseline with my online course. I have that parent set a timer for an hour, do a a language sample. And so in that hour, she had two words while the world shut down. She got no treatment. She got no in-person or on Zoom because everybody was paralyzed. She took my online course and within thirty-three days went from two words in one hour to one hundred and eighty words and phrases. With just mom watching the course and doing it on her own. Which was amazing. Right, so. When she said all this transformation happened, I was like, I need to talk to you. And it turns out she also had pre, right before standardized speech language therapy right before and right after, which also showed huge gains. So anyway, I want to I want to link that that in the show notes, because there were people that kind of got caught with the assessment and diagnosis, clear assessment, diagnosis and then a gap in treatment.
Dr. Lord: Absolutely.
Mary: And so everybody's kind of in a different place where they're caught. I know, for my son. And his pre-vocational placement suddenly closed. And now a year and a half later, he's not back. And we're choosing a different path at this point. But it's pretty much everybody I know has been uniquely affected in some way. OK, let's talk about your longitudinal study. When I read your bio, I pulled this out immediately. And I know I knew I wanted to talk about that. So you are involved in creating and developing diagnostic instruments that describe individual profile of skills and weaknesses and carrying out longitudinal studies from age 15 months to 30 years of age with the goal of identifying protective and risk factors that influence milestones of progress over the years. So I am totally interested in this. Where are you with that study, did it start, and what are your goals and what are your findings so far?
Dr. Lord: Well, we have a lot of findings, so you should keep me under control. But we started in, I think, 1990 with two hundred and thirteen kids referred for possible autism. And then of those, a small group of kids who came from the physicians who referred the kids to us but had developmental delays. But the physicians thought they didn't have autism. And then we actually added those, so they were under age three then. So some of them even under two, but mostly they were two years old. And then we have seen, then we added actually probably ten years later, maybe a little bit longer, a group of nine-year-olds or kids who are about nine who were referred for possible autism at that point, I lived in Michigan. So the original study was started in North Carolina. And then we also added a group in Chicago. So we have now followed these families and the young adults. Now they are turning 30 now. Some of them are 30, actually. So and we've one of the amazing things is we've been able to see them face to face. I mean, all of this came from five-year grants. So the schedule is kind of crazy because it depended on when we had money, what we saw them face to face at age two, age three. Some at four, most it five, nine. And then we had a gap at age fourteen. We just did a long phone interviews. We saw them again at nineteen, twenty-one, twenty-five, and now thirty. So we also had a period of time between when the kids were eleven years old and nineteen where we had parents filling out questionnaires every four months because we were interested in the fact that autism is associated with this unusual onset of seizures during adolescence. And we wanted to see if we could figure out who was going to have a seizure by having parents fill out all these questionnaires to see if it could become more irritable or lethargic or whatever. And then also what happened after the seizure, besides everyone worrying, did they change? The reality is actually it turned out I mean, we have about twenty five percent of our sample have had seizures developing in adolescence all the way up to twenty-six. So it wasn't clustered just as puberty started, but we didn't see any particular changes in the months before or actually afterwards. So that's the good news. And more than half of those young people haven't had more than one or two seizures. So it's mostly not been epilepsy, but it's still very frightening. So but then we just had I mean, the parents who are amazing, just doing these questionnaires over and over and over, so, that we could see that.
Mary: Wow, so you said you do have findings already, and it is this called something that that we could link in the show notes. Are there publications from it or they're just preliminary findings?
Dr. Lord: There's probably, I don't know, 50 or 60 publications. Right. So I could certainly send you a list. Initially, we called it early diagnosis because the first question was whether we could diagnose autism reliably at age two. I mean, one of the questions where Lovaas had reported this 50 percent incredible improvement rate, whereas most clinics didn't see that at all until the question was just, well, could he have misdiagnosed these kids? But the reality is we found you can diagnose autism at two. You absolutely can. And there are some kids that don't quite look autistic at two who later look autistic and we can make mistakes. So it's not perfect. But, you know, almost all of these kids, well, we have some people who have sort of grown out of autism, but it wasn't that they were wrong at two and then three or five and then they look great. It's been very gradual. So that's been one of the most interesting things, is that the changes on the whole for almost everybody I mean, like the little girl you're talking about whose mom jumped in and really had very major changes, mostly it's very incremental. And the question is, how steep is that slope? How fast are kids changing? And then also looking at different aspects of behavior.
Mary: Are you looking at parent behavior before we hit record? You had said, like, how important parents are to the equation are you looking at? Parent involvement, that sort of thing, are you looking at like placements or whether they got speech therapy or like what exactly are you looking at in terms of not just the trajectory of their autism, but like, link it with training, with teaching?
Dr. Lord: We've tried to look at all of that, but mostly we don't get very much information. And part of the problem is this isn't a randomized controlled trial. The kids whose families have more resources get more things. The actually the kids who have more difficulty and greater delays tend to get more things to do and they tend to progress more slowly. But one of the things we did find repeatedly and we found it even again at age at age twenty five, which is the latest data we've analyzed, is that kids whose parents were involved in any kind of treatment that they did weekly or bi weekly over a sustained period of time. So more than six months between the time they were two and three. And then we've just found it all the way up to five. Those kids do better and they do better on almost everything. So they're not all miracles. I mean, they do better than the kids who don't have whose parents didn't do that. And the hard thing is that almost all of the kids who had very severe problems, parents jumped right in. So the variation is mostly with kids who had milder problems, where sometimes parents did things and sometimes parents didn't. And our sample of families are not all wealthy, upper middle class white families. It's really much more diverse than most research. But they were also I mean, particularly the ones of two-year-olds unique in that they were families who sought help when their kids were two, thirty years ago. And I think know even we have about a half of our sample did not graduate from college. Almost everybody graduated from high school. But many families are not highly educated, but they were willing to come and go and see what was going on with their child. And even though lots of them at the time told us, we don't think this is autism, we just think it's language delay, they did things and that makes a difference. And we can show that with data.
Mary: Yeah, well, that's great. And, you know, like in my case, actually, Lucas did look pretty OK at two. I mean, my husband mentioned the possibility, but he's a physician. Everybody else said, no, it's not autism. He went to typical preschool by himself. He didn't have any kind of, you know, really abnormal behavior. So I was in a state of denial. And I'm not asking these questions to make parents out there like I should have got on it at two more aggressively and coulda, shoulda, woulda. It's like you do with the knowledge you have and with that know whatever you're dealt and you just have to when you know better, you do better. And that's why my whole mission is to get these techniques even in the hands of kids with just a minor speech delay or just typically developing. And you want to learn how to engage your kid and help them talk better, faster, have less tantrums, eat better, sleep better, potty training more easily. Because a lot of this is just good parent training with a very you know, probably neurologically impaired child who is acting differently than you know, your first child or his cousin, who, you know, and then not to get into punishment and he's just a bad kid, which can tend to happen a lot with kids, especially if they're on the higher end of the spectrum, like you said they did. They just don't get the help they need early.
Dr. Lord: Yeah, I mean, I think a lot of it is an exaggeration of ordinary parenting, but also being able to say, look, it's OK to say no or to not say no. I mean, or let's not have all the toys out at the same time because some kids can manage that and other kids can't. I mean, so just trying to think about, you know, what is different and then what do I have to do about it and what don't I have to do because you don't have to do everything.
Mary: Yeah. Yeah, definitely. So do you have any, I mean, you did just give some advice to parents. Any other advice for parents who either have a child that's newly diagnosed or an older child that's functioning below a five-year-oldlevel? Like any advice you would have, like just looking at your long term, long term career in autism research as well as a study?
Dr. Lord: I mean, I think just knowing your child and thinking about what strengths does this child have or adults and sometimes they're not quantifiable, they don't show up on tests. But you can have a person who is just actually very easy going or a person who is on top of minor details. But just on top or incredibly reliable or funny, you know, some people with autism have amazing senses of humor. So I think trying to identify those strengths and just make sure that every day you and your child get to even your adult child, get to enjoy some of those things. And then I think I mean, my other thing, which is which is probably harder to say, is around middle of school year elementary school, so eight or nine at least start being realistic, like what is going to happen and what is it that this child really needs to learn? Because we do know that the kids who are around autistic kids who are around neurotypical kids starting in in school age, not so much when they're little, but starting at school years really do do better. But they may not need to learn the same things at all as a fourth or fifth grader. And so how can you do that? How can you get your child, if they don't have siblings to have contact with other kids? But also, how can they be learning the things they need to know? Because I think I think anybody, even adults with moderate to severe difficulties, can do quite a lot. But it is it is dependent on what will they do, what do they want to learn, what do they enjoy learning and what are the situations that bring that out? And I think sometimes we get so stuck on trying to make everybody the same that we don't say, look if this kid could get three times as much music as you supposed to, that would be good. Or look, I think you need basic health care or or domestic chores or working in the garden or whatever it is that we're not trying to replace that with somebody who could be an aerospace engineer. But not everybody is going to do that. And so what can they do that they would really enjoy and be able to do without us standing right there?
Mary: I think I think parents, including myself, get into such gung ho, you know, stance when your child is two and three and at some point in the case of Lucas, OK, is what am I'm trying to project? And maybe that's not fair for kids. I mean, Lucas also has intellectual disability, too. So then for some kids, age is not old enough to kind of project out a couple of years. For Lucas, it was kind of old enough to project like he's probably not going to be able to drive. He's probably not going to go to college. He's going to have to teach him more functional skills in school, and for some kids that are high, higher language and cognitively, you know, even though you might wish for college, I just interviewed a couple moms who have kids that went to college or going to junior college or went to college. It didn't work out like it's not an all or nothing. And you have to sometimes try things and back off. But those kids in grade school and the high school need potentially Girl Scouts, Boy Scouts, karate, other things where parents might not be able to be involved with school, but they could be the scout troop leader or volunteer for camping to help their child and navigate those social responses. Now, I know people personally that that has really been a key for that. OK, so we are about to wrap up and I always like to end my interviews with part of my podcast goals are not just us, help the children, but help the parents and professionals who are listening, maybe some researchers. And I want everyone here to be less stressed and lead happier lives. So given your long career in the autism world, like any self-care tips or stress management strategies that you utilize or comment to others?
Dr. Lord: I think just recognize what you do. I mean, just realize how important you are to your child. And both I mean, you are probably doing lots of day-to-day things which are not minor, but also the fact that I think loved kids know they're loved and don't downplay that. I also think getting support. So if you're a parent and you need support, it could be from anybody. I mean, it could be from your family or not your family. It could be from your church or friends who have kids with autism or don't have. But I would think who around you make your life better? What other adults? And stick up for yourself in terms of the time that you get to spend with those people, even if it's if it's talking to them on the phone or oractually seeing them. So I would just say I think that makes such a difference. And I think most parents of people with autism, it's one of the reasons I like the field are so amazing in dealing with this thing that we don't understand. But that happens to real people. And so I think just give yourself the credit you deserve and don't be skimpy on little pleasures.
Mary: I love that. So we are going to link some things in the show notes for you. And is there any overall website that people can visit to follow your work or you just go to your studies, that sort of thing?
Dr. Lord: I think we do have a language website and I'm not sure. I think if you Google use Catherine Lord at UCLA, you should find it another thing. It's called as Lord Lab. I actually got an email the other day from Amazon saying, Dear Mrs. Lord Lab, you don't seem to be using your video, but try that and hopefully we can give you other information to put on that website page.
Mary: Yeah, that's excellent. We will put the New York Times article on there. We will put a couple of links to the publications from those longitudinal study and things that we talked about during the show. So I know I learned a ton. I'm sure my audience did as well. So thank you so much for your time tonight to talk to us about diagnosing and treating before, during and after the pandemic. And hopefully going forward, we'll have even more findings that we can help for kids earlier and better.
Dr. Lord: Sounds good. Thank you.
Mary: If you're a parent or early intervention professional working with young children with signs of autism, or if you're a parent or professional, helping older children with moderate to severe autism, you'll definitely want to order my new Turn Autism Around book. Today, you'll get access to all the book resources that will help you right away for all the details go to turnautismaround.com.
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