WEBVTT 00:00:00.939 --> 00:00:05.459 Welcome to From the Spectrum Podcast. This is 00:00:05.459 --> 00:00:10.240 a podcast about autism. It is my goal to explain 00:00:10.240 --> 00:00:15.919 what is autism. I plan to use a mixture of scientific 00:00:15.919 --> 00:00:20.079 literature, personal experience, and opinion. 00:00:21.100 --> 00:00:24.660 With opinion, I will explain why I feel the way 00:00:24.660 --> 00:00:29.269 I do and give examples. I will provide links 00:00:29.269 --> 00:00:33.929 to various references for each episode. For each 00:00:33.929 --> 00:00:37.909 episode, we will discuss various aspects of autism. 00:00:40.130 --> 00:00:44.350 For today's episode, it is my pleasure with overwhelming 00:00:44.350 --> 00:00:48.090 excitement to announce the first guest of the 00:00:48.090 --> 00:00:53.189 podcast. From UCLA, George Tarjan, distinguished 00:00:53.189 --> 00:00:58.420 professor of psychiatry and education. Dr. Katherine 00:00:58.420 --> 00:01:04.680 Lord. Dr. Lord is not just any guest. When I 00:01:04.680 --> 00:01:08.099 and most others think about autism research, 00:01:09.120 --> 00:01:12.540 knowledge, and education, there's a short list 00:01:12.540 --> 00:01:18.299 at the top. The top of the top tier. With numerous 00:01:18.299 --> 00:01:22.219 contributions, such as the Autism Diagnostic 00:01:22.219 --> 00:01:26.430 Interview or the ADI, the Social Communication 00:01:26.430 --> 00:01:31.010 Questionnaire, and the Autism Diagnostic Observation 00:01:31.010 --> 00:01:36.510 Schedule, or ADOS. Two are considered the gold 00:01:36.510 --> 00:01:41.689 standards in autism. Assessment. In addition, 00:01:42.230 --> 00:01:45.870 to back my thoughts about Dr. Lord's contributions 00:01:45.870 --> 00:01:51.609 to autism, a paper released in 2023 in Frontiers 00:01:51.609 --> 00:01:56.040 in Psychiatry shows She has the most impact and 00:01:56.040 --> 00:02:02.739 productivity in autism from the years 2011 to 00:02:02.739 --> 00:02:09.199 2022. As you listen, please consider some potential 00:02:09.199 --> 00:02:14.159 highlights of our conversation. Dr. Lord's journey 00:02:14.159 --> 00:02:19.039 into autism and notice despite the highest impact 00:02:19.039 --> 00:02:22.819 score in autism research, she still takes some 00:02:22.879 --> 00:02:29.439 referrals, and sits in on IEP meetings. The evolution 00:02:29.439 --> 00:02:33.379 of the autism assessment process and the evolution 00:02:33.379 --> 00:02:37.759 of the ADOS, from her basement and being overran 00:02:37.759 --> 00:02:41.979 by demand to the gold standard in autism assessment. 00:02:43.740 --> 00:02:47.939 How centralized money, medicine, and education 00:02:47.939 --> 00:02:52.340 interacts with autism and the language used. 00:02:52.509 --> 00:02:59.349 in policy and politics, and in the DSM. Remember 00:02:59.349 --> 00:03:03.310 my previous comments about the DSM. Don't get 00:03:03.310 --> 00:03:08.389 hitched on this book. And finally, how the word 00:03:08.389 --> 00:03:12.569 spectrum is interpreted in professional and in 00:03:12.569 --> 00:03:17.629 the public. An update on profound autism and 00:03:17.629 --> 00:03:26.280 the future of autism. And now, my discussion 00:03:26.280 --> 00:03:30.120 with Dr. Katherine Lord. Dr. Lord, why don't 00:03:30.120 --> 00:03:33.759 you begin with just telling us, when did you 00:03:33.759 --> 00:03:40.259 know autism was going to be your focus? I think 00:03:40.259 --> 00:03:44.960 as an undergraduate, I worked for LOVAS. doing 00:03:44.960 --> 00:03:48.199 very traditional behavioral things. And I worked 00:03:48.199 --> 00:03:52.620 with two kids who I just loved. And by the end 00:03:52.620 --> 00:03:54.659 of working with him for a couple of years, I 00:03:54.659 --> 00:03:59.099 was pretty negative about simple behavioral approaches. 00:03:59.240 --> 00:04:03.860 I felt like, boy, this is not the answer. But 00:04:03.860 --> 00:04:09.340 I loved the kids. And then I went to graduate 00:04:09.340 --> 00:04:12.539 school and deliberately went away from behaviorism. 00:04:12.909 --> 00:04:17.089 But in my last year of graduate school, I ended 00:04:17.089 --> 00:04:22.990 up just by accident teaching a class of kids. 00:04:23.129 --> 00:04:27.810 It was just after IDA. So when special ed schools 00:04:27.810 --> 00:04:33.850 were required to let kids into school, kids with 00:04:33.850 --> 00:04:39.180 disabilities. taught a class of kids coming to 00:04:39.180 --> 00:04:41.180 school for the first time who are between three 00:04:41.180 --> 00:04:44.360 and eight years of age. This was in rural Vermont. 00:04:45.300 --> 00:04:48.540 And in fact, about half the kids had autism. 00:04:49.459 --> 00:04:52.879 All kinds of things. I mean, they ranged from, 00:04:52.959 --> 00:04:56.579 you know, a really smart little girl who is blind, 00:04:57.459 --> 00:05:00.420 who also had who had autism, who could play the 00:05:00.420 --> 00:05:04.980 piano. like you never heard it and who used to 00:05:04.980 --> 00:05:08.100 shout at herself, Tammy, stop playing that goddamn 00:05:08.100 --> 00:05:13.459 piano, which was very embarrassing, but who, 00:05:13.819 --> 00:05:17.379 you know, to a child who couldn't talk and everything 00:05:17.379 --> 00:05:22.300 in between. And, and I think then I just was 00:05:22.300 --> 00:05:26.180 like, oh my gosh, I really like these kids. I 00:05:26.180 --> 00:05:31.120 don't know why. And, and so then I went. When 00:05:31.120 --> 00:05:35.500 I had to do an internship, I also was trying 00:05:35.500 --> 00:05:40.180 to find a position where there were people very 00:05:40.180 --> 00:05:43.040 committed to clinical work, but who also did 00:05:43.040 --> 00:05:45.839 research. And it was really hard because I found 00:05:45.839 --> 00:05:48.980 great researchers who didn't care at all about 00:05:48.980 --> 00:05:51.740 clinical work. And then I also found really good 00:05:51.740 --> 00:05:54.079 clinicians, but who were not reading or doing 00:05:54.079 --> 00:05:58.199 any research. And then I got the position in 00:05:58.199 --> 00:06:02.050 North Carolina at Teach. which at the time was, 00:06:02.189 --> 00:06:05.050 I mean, it wasn't brand new, but it was just 00:06:05.050 --> 00:06:08.589 folding out. And that was an amazing experience. 00:06:08.610 --> 00:06:14.750 So that just did it for me. Yeah. So as you described 00:06:14.750 --> 00:06:20.829 those children long ago, it seems like, correct 00:06:20.829 --> 00:06:23.350 me if I'm wrong, the profession and society didn't 00:06:23.350 --> 00:06:27.170 really recognize it yet as this big continuum 00:06:27.170 --> 00:06:30.389 or spectrum like you described it. Is that correct? 00:06:30.810 --> 00:06:33.750 That is absolutely true. I mean, you know, I 00:06:33.750 --> 00:06:37.569 think Lovasz took on autism because he was very 00:06:37.569 --> 00:06:40.629 interested in behaviorism. And he thought that 00:06:40.629 --> 00:06:44.310 with these techniques, we can teach anybody anything. 00:06:44.589 --> 00:06:48.230 And then he'd heard of these kids who weren't 00:06:48.230 --> 00:06:51.970 communicating in an ordinary fashion. So he literally, 00:06:52.089 --> 00:06:54.269 I mean, what was amazing was he brought kids 00:06:54.269 --> 00:06:57.970 out of a state hospital and they lived here on 00:06:57.970 --> 00:07:01.459 campus. And the idea was we were going to cure 00:07:01.459 --> 00:07:05.160 these kids, which is ridiculous. But and then 00:07:05.160 --> 00:07:08.660 I worked with two kids and one little guy never 00:07:08.660 --> 00:07:11.319 did what I was trying to get him to talk. He 00:07:11.319 --> 00:07:14.959 never talked. We were both dying of boredom. 00:07:14.959 --> 00:07:18.160 So we spent a lot of time in the bathroom. You 00:07:18.160 --> 00:07:21.290 know, I got him to. you know, wash his hands 00:07:21.290 --> 00:07:24.389 and we learned how to get paper towels and we 00:07:24.389 --> 00:07:27.329 were really, I mean, about ready to throw spitballs, 00:07:27.370 --> 00:07:31.470 I think. And then the other guy was a kid who 00:07:31.470 --> 00:07:33.769 I think had stopped talking when he was sent 00:07:33.769 --> 00:07:36.839 to the institution. Once he came here and he 00:07:36.839 --> 00:07:40.300 had this army of predominantly young women working 00:07:40.300 --> 00:07:42.920 with him, he started talking and he was ahead 00:07:42.920 --> 00:07:45.800 of me every step of the way. You know, I would 00:07:45.800 --> 00:07:48.259 be like, all right, we're going to work on pronouns. 00:07:48.379 --> 00:07:51.839 And he would be saying you would be using pronouns. 00:07:52.420 --> 00:07:57.620 So that was very interesting, too. So I just 00:07:57.620 --> 00:08:00.240 felt like there's so much we don't understand 00:08:00.240 --> 00:08:06.100 here that and. I'm not completely negative about 00:08:06.100 --> 00:08:09.500 all behavioral techniques, but I think, you know, 00:08:09.879 --> 00:08:14.420 it was so oversimplified that what we were going 00:08:14.420 --> 00:08:18.019 to do and what were we trying to accomplish. 00:08:19.879 --> 00:08:25.360 Yeah, that's a great mindset. The idea of like 00:08:25.360 --> 00:08:28.560 the ABA or this behaviorism is interesting to 00:08:28.560 --> 00:08:33.529 me, whereas It's it's another human being instructing 00:08:33.529 --> 00:08:37.750 another human being on On what they should be 00:08:37.750 --> 00:08:41.110 doing or ought to be doing But who's to say that 00:08:41.110 --> 00:08:44.149 the the instructing human being, you know, it 00:08:44.149 --> 00:08:48.350 knows what's best for that in this case a child. 00:08:48.990 --> 00:08:52.970 Yeah So that's the hard part, you know, and I 00:08:52.970 --> 00:08:57.029 think with these two kids we were way off with 00:08:57.029 --> 00:08:59.700 both of them because one of them you know he 00:08:59.700 --> 00:09:03.080 couldn't imitate sounds so for me to spend for 00:09:03.080 --> 00:09:05.299 us to spend 40 hours a week trying to get him 00:09:05.299 --> 00:09:08.379 to say bah and the idea that he was going to 00:09:08.379 --> 00:09:11.879 say bah in order to get a frito he the poor kid 00:09:11.879 --> 00:09:15.360 couldn't do it but he could do other things you 00:09:15.360 --> 00:09:18.639 know and then the other kid was ahead of me he 00:09:18.639 --> 00:09:21.139 was like i was you know he could have taught 00:09:21.139 --> 00:09:25.700 me um the sad thing is he went back to the institution 00:09:25.700 --> 00:09:29.539 and stopped talking again and so we were just 00:09:29.539 --> 00:09:31.899 doing the I mean we were doing something right 00:09:31.899 --> 00:09:34.360 which was giving him all this positive attention 00:09:34.360 --> 00:09:37.980 but the actual teaching of language was neither 00:09:37.980 --> 00:09:42.600 here nor there and I do have very mixed feelings 00:09:42.600 --> 00:09:45.659 I mean I think hopefully this I can say this 00:09:45.659 --> 00:09:49.559 well because I do think sometimes we have to 00:09:49.559 --> 00:09:53.740 say like sometimes I have to say look I as an 00:09:53.740 --> 00:09:57.620 adult I do know more than you as a three -year 00:09:57.620 --> 00:10:01.169 -old about what life is like and what you're 00:10:01.169 --> 00:10:04.929 going to need to learn. But also, I want to respect 00:10:04.929 --> 00:10:08.470 what you are good at and what you're interested 00:10:08.470 --> 00:10:11.330 in. And the more I can do that, the more we're 00:10:11.330 --> 00:10:15.450 going to learn together. Absolutely. And that's 00:10:15.450 --> 00:10:17.830 the trade off. And I think we've had, you know, 00:10:17.970 --> 00:10:21.789 real pushback from the autistic community. Like, 00:10:22.049 --> 00:10:24.990 let's not, you know, I shouldn't be making any 00:10:24.990 --> 00:10:28.470 decisions. But sometimes I feel like I mean, 00:10:28.470 --> 00:10:32.909 we have some patients who are periodically physically 00:10:32.909 --> 00:10:38.929 aggressive and it just, this is not good. It 00:10:38.929 --> 00:10:42.769 just harms them and it's such a shame because 00:10:42.769 --> 00:10:46.070 it restricts what they can do. And so I do think 00:10:46.070 --> 00:10:48.429 somebody then has to jump in and say, all right, 00:10:48.429 --> 00:10:53.350 how do we help them do other things? And so you 00:10:53.350 --> 00:10:56.970 do need somebody jumping in. On the other hand, 00:10:57.019 --> 00:11:00.580 I'm not trying to say, like, don't look at lines. 00:11:00.639 --> 00:11:03.039 If you like lines, you can look at lines all 00:11:03.039 --> 00:11:07.019 you want. And if you can draw by, you know, that 00:11:07.019 --> 00:11:10.000 is wonderful. So let's build on your strength. 00:11:10.580 --> 00:11:12.879 But I'm still I am going to try to keep you or 00:11:12.879 --> 00:11:14.899 from pulling your mother's hair or whatever, 00:11:15.000 --> 00:11:18.340 you know. Yes, just given a little bit of different 00:11:18.340 --> 00:11:24.179 perspectives can go a long way. Yeah. So before 00:11:24.179 --> 00:11:28.399 the creation of the ADI, and social communication 00:11:28.399 --> 00:11:31.519 questionnaire in the ADOS, what was the condition 00:11:31.519 --> 00:11:35.820 of the autism assessment like? Well, I think, 00:11:35.860 --> 00:11:37.919 I mean, it's interesting because one of the things 00:11:37.919 --> 00:11:41.620 that TEACH did in North Carolina was they were 00:11:41.620 --> 00:11:44.320 one of the first groups to have like a standard 00:11:44.320 --> 00:11:47.000 assessment. So they had something called the 00:11:47.000 --> 00:11:53.600 PEP, the psychoeducational profile. And so there 00:11:53.600 --> 00:11:57.159 was a standard assessment, but it wasn't... It 00:11:57.159 --> 00:12:02.399 didn't meet the standards for testing that some 00:12:02.399 --> 00:12:05.879 of the famous tests like the SAT or the WISC, 00:12:06.659 --> 00:12:10.860 it didn't meet those standards. But they were 00:12:10.860 --> 00:12:13.919 a group that really tried to help figure out 00:12:13.919 --> 00:12:16.120 what do you do when you're face -to -face with 00:12:16.120 --> 00:12:18.820 a kid you've never met before and how do you 00:12:18.820 --> 00:12:22.080 figure out what they can do. One of the concepts 00:12:22.080 --> 00:12:25.600 they had, which we really used, especially in 00:12:25.600 --> 00:12:30.259 the ADOS, is this idea of if you don't, if you 00:12:30.259 --> 00:12:33.539 present a task to a kid and they don't seem to 00:12:33.539 --> 00:12:36.620 be able to do it as you think they should, what 00:12:36.620 --> 00:12:41.039 do you do next? Like, how do you see if they 00:12:41.039 --> 00:12:43.620 can do it if you change something? You know, 00:12:43.679 --> 00:12:46.820 if instead of putting out 20 blocks at once, 00:12:46.860 --> 00:12:49.860 you hand them one at a time. you know is it just 00:12:49.860 --> 00:12:53.100 that there's too much stuff or is it that the 00:12:53.100 --> 00:12:58.519 blocks are wooden and they don't like wood or 00:12:58.519 --> 00:13:02.200 you know those kinds of things and so this idea 00:13:02.200 --> 00:13:05.360 of like emerging skill and being able to say 00:13:05.360 --> 00:13:08.320 all right this is what this is how i needed to 00:13:08.320 --> 00:13:12.250 change in order to help the child that I'm working 00:13:12.250 --> 00:13:14.990 with be able to accomplish the task? And then 00:13:14.990 --> 00:13:17.990 how can I use that information in planning what 00:13:17.990 --> 00:13:25.269 we're going to do next? Okay, yeah. So as you 00:13:25.269 --> 00:13:29.129 describe such details about the instruments, 00:13:30.190 --> 00:13:34.909 from a creator, now we all know that these instruments 00:13:34.909 --> 00:13:39.330 get revised and modified throughout. But how 00:13:39.330 --> 00:13:43.370 do you know when they need revised or modifications. 00:13:45.250 --> 00:13:48.950 Oh, goodness. They always need revisions. I think 00:13:48.950 --> 00:13:53.110 the reality is they're always they are not perfect. 00:13:53.490 --> 00:13:57.610 So they always, you know, we always know we always 00:13:57.610 --> 00:14:01.110 have a list of like 10 or 20 things that we want 00:14:01.110 --> 00:14:04.309 to improve. I mean, I think at this point, we 00:14:04.309 --> 00:14:07.009 are partly captive to the fact that they're published 00:14:07.009 --> 00:14:12.700 by a business. And so And I think that is just 00:14:12.700 --> 00:14:15.840 a practicality. For a long time, we literally 00:14:15.840 --> 00:14:19.580 made these things in my basement. And then my 00:14:19.580 --> 00:14:22.700 husband was like, no plastic bags in the bathroom. 00:14:24.120 --> 00:14:28.240 It was just crazy. And we were getting hate mail 00:14:28.240 --> 00:14:32.000 from people saying, why can't you get this to 00:14:32.000 --> 00:14:35.460 us? We're a little bit in that situation now 00:14:35.460 --> 00:14:39.440 because we tried to come up with a shorter version 00:14:39.440 --> 00:14:42.860 and we're making kits. So I went to a company 00:14:42.860 --> 00:14:47.259 and they make it, but then what happens in terms 00:14:47.259 --> 00:14:51.059 of revisions is very dependent on them. So I 00:14:51.059 --> 00:14:55.799 think the revisions come both from us knowing 00:14:55.799 --> 00:15:00.320 this didn't work that well, but also from changes 00:15:00.320 --> 00:15:04.100 in the field. For example, we're seeing many 00:15:04.100 --> 00:15:07.809 more adults who haven't had a diagnosis before, 00:15:08.590 --> 00:15:12.149 who are quite bright. And that is different than 00:15:12.149 --> 00:15:16.429 what we saw, you know, even 25 years ago, when 00:15:16.429 --> 00:15:19.470 not, I mean, we definitely saw some autistic 00:15:19.470 --> 00:15:22.889 kids who were very smart, but we also, it was 00:15:22.889 --> 00:15:25.870 just a different group, you know, who is, who 00:15:25.870 --> 00:15:28.490 is referred in preschool is different than who's 00:15:28.490 --> 00:15:31.070 referred at school age, and it's different from 00:15:31.070 --> 00:15:34.899 who's referred. So those kinds of things say, 00:15:35.100 --> 00:15:36.820 wait a minute, we're going to have to figure 00:15:36.820 --> 00:15:40.840 out better ways of addressing this. So always 00:15:40.840 --> 00:15:43.679 I would say, you know, but then the publisher, 00:15:43.779 --> 00:15:47.759 like there's going to be a revised ADAS and we 00:15:47.759 --> 00:15:51.019 have been bugging the publisher for years to 00:15:51.019 --> 00:15:54.419 do it. And now they're finally ready. So we are 00:15:54.419 --> 00:15:59.320 working away at a new version, but it's We do 00:15:59.320 --> 00:16:01.500 it, and then it takes the publisher another whole 00:16:01.500 --> 00:16:03.860 year to lay out all the forms and figure out 00:16:03.860 --> 00:16:08.639 what they're doing. But you should tell people 00:16:08.639 --> 00:16:12.019 that are listening, we have lists. If people 00:16:12.019 --> 00:16:14.940 have complaints, let us know. We will file them 00:16:14.940 --> 00:16:18.600 away. We can't do anything often immediately, 00:16:18.600 --> 00:16:21.779 but we are listening and trying to figure out 00:16:21.779 --> 00:16:24.980 how to make the thing better. Oh, yeah, I appreciate 00:16:24.980 --> 00:16:31.559 that. I read about... how much input you take 00:16:31.559 --> 00:16:34.639 on from people in the community and people with 00:16:34.639 --> 00:16:41.159 autism. So with the current condition of the 00:16:41.159 --> 00:16:46.279 autism assessment, what do you think the overall 00:16:46.279 --> 00:16:50.679 assessment needs? What are the biggest gaps? 00:16:52.059 --> 00:16:55.559 That's a really good question. I mean, I think 00:16:58.000 --> 00:17:02.159 I think how you put information together is we 00:17:02.159 --> 00:17:05.400 have not specified that. We really have left 00:17:05.400 --> 00:17:10.240 it up to the clinician. So you may have, these 00:17:10.240 --> 00:17:13.119 days you may have a parent who gives reports 00:17:13.119 --> 00:17:16.519 on the ADI, which is this long interview. Then 00:17:16.519 --> 00:17:21.000 you may see the person. and do an ADAS, which 00:17:21.000 --> 00:17:23.720 is just scored. The ADAS is scored from the time 00:17:23.720 --> 00:17:26.160 you start it to the time you finish it, like 00:17:26.160 --> 00:17:29.539 45 minutes. You don't score anything else, you 00:17:29.539 --> 00:17:32.059 know, so it's there's because that you want it 00:17:32.059 --> 00:17:35.039 to be reliable. But then also you have information 00:17:35.039 --> 00:17:37.960 about like what is what are the other things 00:17:37.960 --> 00:17:40.779 that are happening in people's lives that, for 00:17:40.779 --> 00:17:44.980 example, a parent might know not me might not 00:17:44.980 --> 00:17:48.500 know. So how do you put that all together? And 00:17:48.500 --> 00:17:51.420 I think we don't tell people how to do that. 00:17:51.579 --> 00:17:54.940 We really leave it up to the clinician. And I 00:17:54.940 --> 00:17:59.339 think that is both good because you hope the 00:17:59.339 --> 00:18:02.440 clinicians are good working with whoever the 00:18:02.440 --> 00:18:05.740 person is who's come for the diagnosis, but it 00:18:05.740 --> 00:18:09.140 also means people don't know what to do. If you 00:18:09.140 --> 00:18:13.210 have somebody who really feels like they have 00:18:13.210 --> 00:18:16.130 autism and you see them on the ADAS and they 00:18:16.130 --> 00:18:18.109 don't look like they have autism, what do you 00:18:18.109 --> 00:18:23.049 do? Or you have a parent who is describing all 00:18:23.049 --> 00:18:25.990 kinds of things and you don't see it, what do 00:18:25.990 --> 00:18:31.730 you do? And so that's a gap. I think we also, 00:18:33.329 --> 00:18:36.869 so far the ADAS has worked, the ADAS at least 00:18:36.869 --> 00:18:39.769 has worked quite well across different cultures. 00:18:40.450 --> 00:18:44.269 But it really is, which includes sort of gender. 00:18:44.990 --> 00:18:47.690 So, but it really is up to the clinician to modify 00:18:47.690 --> 00:18:50.690 things, you know, to say, wait a minute, I have 00:18:50.690 --> 00:18:55.349 in front of me, you know, a young woman who is, 00:18:55.349 --> 00:18:58.250 you know, interested in princesses and not in 00:18:58.250 --> 00:19:03.829 cars. So I need to pull out this toy or whatever. 00:19:04.210 --> 00:19:07.470 And that's not as well specified as it should 00:19:07.470 --> 00:19:11.279 be of how How can you be flexible within it? 00:19:11.740 --> 00:19:18.079 So I think that's another issue. And it's, I 00:19:18.079 --> 00:19:20.960 mean, we are dealing with the practicalities 00:19:20.960 --> 00:19:23.359 of a medical system, particularly in the United 00:19:23.359 --> 00:19:28.079 States, you know, that's very focused on procedures, 00:19:28.079 --> 00:19:31.400 like what do you do in the office? You know, 00:19:31.400 --> 00:19:36.220 that's how billing works. And often you need 00:19:36.220 --> 00:19:40.970 other information. And so how do you incorporate 00:19:40.970 --> 00:19:43.910 that information? You know, both from the person 00:19:43.910 --> 00:19:47.309 seeking the diagnosis, but also from other people 00:19:47.309 --> 00:19:52.609 who might know them in other circumstances. Okay, 00:19:52.890 --> 00:19:59.150 yeah. Yeah, and something that interests me is, 00:19:59.170 --> 00:20:02.089 especially now more and more, is this idea of 00:20:02.089 --> 00:20:06.569 early screening, even if it's by like a PCP. 00:20:07.819 --> 00:20:11.500 So I have a couple of questions on that. One 00:20:11.500 --> 00:20:16.400 is, does this screening, is it as standardized 00:20:16.400 --> 00:20:20.059 as, let's say, an assessment or one of these 00:20:20.059 --> 00:20:24.960 instruments? How do we know that the PCP is equipped 00:20:24.960 --> 00:20:30.920 and can handle this screening? And then, does 00:20:30.920 --> 00:20:35.759 the screening help? the overall process of the 00:20:35.759 --> 00:20:39.200 assessment. Now we know that it would help the 00:20:39.200 --> 00:20:42.220 treatment plan. The earlier you get the treatment, 00:20:42.819 --> 00:20:45.859 the better off, the better the outcome. But does 00:20:45.859 --> 00:20:48.660 that kind of help the assessment at that younger 00:20:48.660 --> 00:20:52.720 age as well? I mean, I think the screenings. 00:20:53.369 --> 00:20:57.269 help get people to think about the possibility 00:20:57.269 --> 00:21:00.829 of autism. At this point, most of the screening 00:21:00.829 --> 00:21:04.289 is either questionnaires for parents filling 00:21:04.289 --> 00:21:09.250 out or very brief things that people are experimenting 00:21:09.250 --> 00:21:12.329 with. So in terms of like showing a kid an iPad 00:21:12.329 --> 00:21:15.549 and seeing if they look at two children playing 00:21:15.549 --> 00:21:20.410 together or they look at a tree. But there isn't 00:21:20.410 --> 00:21:23.569 yet So there's beginning evidence that those 00:21:23.569 --> 00:21:27.569 might provide you useful information, but it's 00:21:27.569 --> 00:21:30.109 very, very new. And I think you're right. How 00:21:30.109 --> 00:21:32.710 people are going to use that information is not 00:21:32.710 --> 00:21:36.349 clear. I think if people use it like one source 00:21:36.349 --> 00:21:39.109 of information, you know, it's just like one 00:21:39.109 --> 00:21:43.009 thing, then that's fine. I mean, it gives them 00:21:43.009 --> 00:21:45.809 an idea of like, wait a minute, I need to stop 00:21:45.809 --> 00:21:51.140 and worry about this. So that's good, it gets 00:21:51.140 --> 00:21:54.380 people thinking about autism, but if people use 00:21:54.380 --> 00:21:58.240 it in place of like actually spending time with 00:21:58.240 --> 00:22:01.480 a child and figuring out how does the child go 00:22:01.480 --> 00:22:03.700 about doing things and what are they interested 00:22:03.700 --> 00:22:06.559 in and how can you get them to do the things 00:22:06.559 --> 00:22:09.220 like talking that you want them to do, I think 00:22:09.220 --> 00:22:12.859 that would be really harmful. So I think the 00:22:12.859 --> 00:22:16.950 screening... If it's just getting people to think 00:22:16.950 --> 00:22:19.890 about stuff, it's fine, but if it's treated as 00:22:19.890 --> 00:22:24.009 an answer, it's not. We just got a referral of 00:22:24.009 --> 00:22:27.210 a child who has been screened numerous times, 00:22:27.529 --> 00:22:31.369 never got a diagnosis, has a developmental delay 00:22:31.369 --> 00:22:35.069 category, and he's in a preschool program. He's 00:22:35.069 --> 00:22:38.430 been there for a year, and I think he's got autism, 00:22:38.910 --> 00:22:41.849 and nobody has really... looked at this carefully 00:22:41.849 --> 00:22:43.829 and she's like well what are you thinking you 00:22:43.829 --> 00:22:48.190 know um so that i feel like it's not an end it's 00:22:48.190 --> 00:22:53.430 a beginning no um and i think it's you know if 00:22:53.430 --> 00:22:56.430 you think about like going to a doctor and they 00:22:56.430 --> 00:23:00.170 do like a blood panel you know mostly they don't 00:23:00.170 --> 00:23:03.029 stop that that's a start it's not a it's not 00:23:03.029 --> 00:23:06.279 an end you know, unless they say, aha, you have 00:23:06.279 --> 00:23:08.880 strep throat, I'm putting you on this. Most of 00:23:08.880 --> 00:23:12.079 the time it's just a beginning. And that's where 00:23:12.079 --> 00:23:18.440 it's important. Yeah. Yeah. Okay. So this idea 00:23:18.440 --> 00:23:22.819 of, as you described that child in preschool 00:23:22.819 --> 00:23:26.160 going through those numerous screenings, it's 00:23:26.160 --> 00:23:31.859 like this idea of spectrum as we kind of lump 00:23:33.339 --> 00:23:36.859 everybody with autism into this white spectrum. 00:23:37.539 --> 00:23:42.079 I'm kind of concerned that for a couple of different 00:23:42.079 --> 00:23:49.380 reasons, maybe the biggest one is how wide or 00:23:49.380 --> 00:23:52.519 how much of a variety there is. Let's say from 00:23:52.519 --> 00:23:56.339 like a level one high functioning to a level 00:23:56.339 --> 00:24:00.460 three that has completely different looks to 00:24:00.460 --> 00:24:05.609 it. And my concern is how do people from the 00:24:05.609 --> 00:24:10.289 outside looking in, how do they know? Like, how 00:24:10.289 --> 00:24:15.869 do we teach society about this broad spectrum? 00:24:16.950 --> 00:24:21.490 Yeah, I mean, I agree. I don't know. I think 00:24:21.490 --> 00:24:24.809 part of the problem, I mean, the reason why we 00:24:24.809 --> 00:24:27.490 would start with autism and not just say, all 00:24:27.490 --> 00:24:30.140 right, it's actually... three different things 00:24:30.140 --> 00:24:32.799 or two different things. I think there's two 00:24:32.799 --> 00:24:36.460 reasons. One is that at early ages, you can't 00:24:36.460 --> 00:24:40.500 tell. We can tell that a two -year -old or three 00:24:40.500 --> 00:24:44.599 -year -old has autism. We can't predict, especially 00:24:44.599 --> 00:24:48.079 at two, we can't predict, are they going to be 00:24:48.079 --> 00:24:55.019 brilliant with autism and getting a PhD in physics, 00:24:55.619 --> 00:25:00.529 or are they going to be nonverbal? So we can't 00:25:00.529 --> 00:25:04.930 tell and we can begin to tell at gradual at like 00:25:04.930 --> 00:25:08.410 three and four and five, but we can't tell with 00:25:08.410 --> 00:25:11.390 the tiny kids and we want to get them in services. 00:25:11.589 --> 00:25:14.130 I mean, one of the things our Lancet commission 00:25:14.130 --> 00:25:17.150 really tried to say is kids should be able to 00:25:17.150 --> 00:25:20.130 get services before they even get a full diagnosis. 00:25:20.710 --> 00:25:23.329 You know, if you're worried about the kid. get 00:25:23.329 --> 00:25:25.970 them in and then say all right sometime this 00:25:25.970 --> 00:25:28.750 year we got to do a better assessment so we know 00:25:28.750 --> 00:25:31.630 him better so he's not like the little guy just 00:25:31.630 --> 00:25:35.170 described but let's not wait but we don't know 00:25:35.170 --> 00:25:39.470 so that's one reason why we need sort of autism 00:25:39.470 --> 00:25:42.529 spectrum the other reason is there's a ton of 00:25:42.529 --> 00:25:46.230 people in the middle between the physicist and 00:25:46.230 --> 00:25:50.160 the person who can't talk and What do we do with 00:25:50.160 --> 00:25:52.819 them? I mean, we've been working at trying to 00:25:52.819 --> 00:25:57.400 have a better definition of profound autism of 00:25:57.400 --> 00:26:00.599 like people that are really very handicapped. 00:26:00.839 --> 00:26:06.220 And we can do that. But then what what about 00:26:06.220 --> 00:26:10.039 everybody else? And there's such there's still 00:26:10.039 --> 00:26:14.319 a spectrum from people that are really totally 00:26:14.319 --> 00:26:18.670 independent and just have some struggles with 00:26:18.670 --> 00:26:22.410 some of the social things or some of the sensory 00:26:22.410 --> 00:26:25.549 things that affect people with autism. And then 00:26:25.549 --> 00:26:29.329 there's people who are really, you know, very, 00:26:31.789 --> 00:26:36.009 their lives are very different because of the 00:26:36.009 --> 00:26:39.130 autism, you know, even though they're bright 00:26:39.130 --> 00:26:42.150 and they have other, you know, they have many 00:26:42.150 --> 00:26:45.029 strings. So where do we put them? And I don't 00:26:45.029 --> 00:26:48.259 know. The trouble is they're not those people 00:26:48.259 --> 00:26:52.440 are mostly not making podcasts They're you know, 00:26:52.700 --> 00:26:56.460 they're there and we see them in the clinic But 00:26:56.460 --> 00:26:59.619 they're not in for now. Actually most many of 00:26:59.619 --> 00:27:02.740 them are not getting help at all And so what 00:27:02.740 --> 00:27:05.619 do we do about them? So, I don't know but I do 00:27:05.619 --> 00:27:09.619 I Do I I don't feel like I have the answer at 00:27:09.619 --> 00:27:14.079 all, you know, and I I get why A few years ago, 00:27:14.180 --> 00:27:16.480 we thought, oh, it'll be genetics. Everyone will 00:27:16.480 --> 00:27:19.460 know what their genetic disorder is, and they 00:27:19.460 --> 00:27:23.220 won't need autism. But the reality is the genetics, 00:27:23.740 --> 00:27:26.960 even when you know what the genetics are, one 00:27:26.960 --> 00:27:29.259 third of the people might have autism, and one 00:27:29.259 --> 00:27:32.039 third of the people have epilepsy, and one third 00:27:32.039 --> 00:27:39.019 of the people. There is no single genetic cause 00:27:39.019 --> 00:27:43.099 of autism only. And then most people with autism 00:27:43.099 --> 00:27:46.700 don't have these, so I don't know. I'm ready 00:27:46.700 --> 00:27:50.039 to listen to you, Ryan, and what we should do 00:27:50.039 --> 00:27:54.279 that would be more helpful. And it's so confusing 00:27:54.279 --> 00:27:59.660 to families, I think. I feel like, and to the 00:27:59.660 --> 00:28:02.400 public, because the public thinks everybody, 00:28:02.880 --> 00:28:05.200 people with autism are like the good doctor, 00:28:05.900 --> 00:28:10.690 which is just not. True But there are people 00:28:10.690 --> 00:28:15.630 who do really well. Yeah, so I Don't know. I 00:28:15.630 --> 00:28:18.630 I don't know it's it's easier for society looking 00:28:18.630 --> 00:28:22.609 in to recognize Like the good doctor and then 00:28:22.609 --> 00:28:28.650 recognize the profound. Yeah autism But there's 00:28:28.650 --> 00:28:33.549 so much in between Yeah, and the the genetic 00:28:33.549 --> 00:28:38.740 Not one thing and not Even if you have that genetic 00:28:38.740 --> 00:28:42.079 dysfunction, I guess, if you will, it doesn't 00:28:42.079 --> 00:28:46.119 necessarily mean autism. There's a whole patchwork 00:28:46.119 --> 00:28:50.779 of things going on way upstream in our biology 00:28:50.779 --> 00:28:56.380 that is just hard to capture. This idea of the 00:28:56.380 --> 00:29:01.220 spectrum, though, is like, you know, I get concerned 00:29:01.220 --> 00:29:05.390 about how people view it. and not having distinct 00:29:05.390 --> 00:29:11.710 edges. I heard Dr. Venstra Vanderwill, I believe, 00:29:11.930 --> 00:29:16.390 talk about not having edges so we can better 00:29:16.390 --> 00:29:19.930 have more understanding of this group of people 00:29:19.930 --> 00:29:22.289 with autism and this group of people with autism. 00:29:22.930 --> 00:29:30.970 But there's just so much. Yeah. I'm hoping that 00:29:30.970 --> 00:29:33.400 since you mentioned And we touched on profound 00:29:33.400 --> 00:29:35.759 autism and the Lancet Commission. I'm hoping 00:29:35.759 --> 00:29:38.839 that you can give an update that was released 00:29:38.839 --> 00:29:42.480 in 2022, I believe, and just seeing how that 00:29:42.480 --> 00:29:47.059 goes or how that's going. Yeah, I don't know. 00:29:47.359 --> 00:29:50.000 I think, you know, I mean, one of the things 00:29:50.000 --> 00:29:52.140 I want to say about the Lancet Commission is 00:29:52.140 --> 00:29:55.059 profound autism was just a tiny part of it, but 00:29:55.059 --> 00:29:57.680 it's gotten more attention than anything else. 00:29:58.039 --> 00:30:00.500 And the major thing that the Lancet Commission 00:30:00.500 --> 00:30:05.640 was trying to say is we need more research on 00:30:05.640 --> 00:30:07.839 what actually makes a difference in people's 00:30:07.839 --> 00:30:12.779 lives, and that we do need to work with the autistic 00:30:12.779 --> 00:30:18.200 community, both people with autism and also parents, 00:30:18.660 --> 00:30:21.180 to figure out what makes a difference, because 00:30:21.180 --> 00:30:26.440 we know so much more about biology, which is 00:30:26.440 --> 00:30:29.720 very interesting, but on the whole has not helped. 00:30:31.980 --> 00:30:35.539 It will help I think someday, but it's very long 00:30:35.539 --> 00:30:40.400 term. And we need to know more just like how 00:30:40.400 --> 00:30:43.160 many hours of something does a kid need and how 00:30:43.160 --> 00:30:50.079 do you decide and does telehealth CBT work for 00:30:50.079 --> 00:30:53.759 whom and why not or why and those kind of things. 00:30:53.779 --> 00:30:56.779 So that was the main point. And then also across 00:30:56.779 --> 00:31:00.799 cultures because most of the research has really 00:31:00.799 --> 00:31:04.880 come from Europe or the US or to some extent, 00:31:05.000 --> 00:31:07.700 some of the wealthier Asian company countries. 00:31:08.200 --> 00:31:11.119 But there's a lot of autistic people out there 00:31:11.119 --> 00:31:15.140 who don't get anything. So that I'll just put 00:31:15.140 --> 00:31:18.920 in my push for it because profound autism just 00:31:18.920 --> 00:31:22.680 hit the news more. I think that, you know, there's 00:31:22.680 --> 00:31:26.299 now two, you know, there's now the profound autism 00:31:26.299 --> 00:31:34.049 alliance and there's I think both the major research 00:31:34.049 --> 00:31:36.849 organizations are recognizing profound autism. 00:31:37.430 --> 00:31:42.269 There was a lot of conflict over what would go 00:31:42.269 --> 00:31:47.450 into, they're trying to pass a new bill for autism 00:31:47.450 --> 00:31:51.450 cares in Congress. And there were really very 00:31:51.450 --> 00:31:53.940 different groups. who are saying, you know, if 00:31:53.940 --> 00:31:56.099 you mentioned profound autism, we won't sign 00:31:56.099 --> 00:31:58.720 it. And then other people saying you have to 00:31:58.720 --> 00:32:01.319 mention it or we won't sign it. I think they've 00:32:01.319 --> 00:32:06.259 agreed on words, you know, you know, and but 00:32:06.259 --> 00:32:09.160 I'm not sure even what those words are. But I 00:32:09.160 --> 00:32:14.579 think the idea of like high support needs. So 00:32:14.579 --> 00:32:18.200 I think that's a big step. And at least recognizing 00:32:18.759 --> 00:32:21.599 You know, it's just ironic because most of the 00:32:21.599 --> 00:32:25.059 biological research on autism, at least the genetics, 00:32:25.299 --> 00:32:30.019 has been on kids who are very handicapped. And 00:32:30.019 --> 00:32:33.180 then all the other research is mostly on people 00:32:33.180 --> 00:32:36.599 who are not. And so there's just, again, this 00:32:36.599 --> 00:32:40.099 middle that doesn't get addressed. And then there's 00:32:40.099 --> 00:32:43.880 also the, we need behavioral research on people 00:32:43.880 --> 00:32:48.160 that have more severe issues. And we need Well, 00:32:48.160 --> 00:32:51.000 I don't know how much we need the genetics of 00:32:51.000 --> 00:32:55.960 brighter people. I'm skeptical that's going to 00:32:55.960 --> 00:33:01.160 help a whole lot. But anyway, I think people 00:33:01.160 --> 00:33:03.559 are getting more used to profound autism and 00:33:03.559 --> 00:33:07.220 the idea, but there's various groups. There are 00:33:07.220 --> 00:33:09.599 groups that want us to declare who has profound 00:33:09.599 --> 00:33:12.259 autism when they're three years old, which I 00:33:12.259 --> 00:33:16.019 think is really wrong. Because you don't know 00:33:16.019 --> 00:33:21.140 No on the other hand, I think Accepting the fact 00:33:21.140 --> 00:33:23.559 that there is this broad spectrum and sometimes 00:33:23.559 --> 00:33:26.500 people who can't speak for themselves are left 00:33:26.500 --> 00:33:30.039 out and that we do need Families and we need 00:33:30.039 --> 00:33:32.579 to recognize that someone needs to advocate for 00:33:32.579 --> 00:33:35.299 these people because they're they're not able 00:33:35.299 --> 00:33:40.779 to talk to you know write books or or speak, 00:33:41.119 --> 00:33:44.220 or they can speak, but they can't really stick 00:33:44.220 --> 00:33:49.019 up for themselves and what they need. Yeah, I 00:33:49.019 --> 00:33:51.579 just read a paper and I think it just came out 00:33:51.579 --> 00:33:56.940 about this university or research center claim 00:33:56.940 --> 00:34:00.660 that they could predict profound autism versus 00:34:00.660 --> 00:34:04.240 non -profound autism based off of the size of 00:34:04.240 --> 00:34:09.320 a brain or something in the cell biology, if 00:34:09.320 --> 00:34:12.000 I'm not mistaken. I thought that was kind of 00:34:12.000 --> 00:34:15.019 interesting. I don't know. I mean, they might. 00:34:15.179 --> 00:34:17.199 I mean, I do think there are certain genetic 00:34:17.199 --> 00:34:21.239 disorders that are very much tied to intellectual 00:34:21.239 --> 00:34:26.079 disability and often seizures. And so the chances 00:34:26.079 --> 00:34:30.219 if you have those of having, if you have autism, 00:34:30.280 --> 00:34:34.179 which not everybody does, of also having intellectual 00:34:34.179 --> 00:34:37.889 disability are high. But I would hate for people 00:34:37.889 --> 00:34:43.250 to be limiting kids when they're very little, 00:34:43.250 --> 00:34:46.530 you know, saying they're never going to be able 00:34:46.530 --> 00:34:50.530 to do this or that. You know, I think I mean, 00:34:50.590 --> 00:34:53.329 what we're interested in, you know, just because 00:34:53.329 --> 00:34:57.190 we've been doing research so long is the trajectory. 00:34:57.309 --> 00:35:00.869 Like, what is the how are you changing? And if 00:35:00.869 --> 00:35:04.570 you can use that plus what who is helping and 00:35:04.570 --> 00:35:08.619 who is not. then I think that's much more useful. 00:35:08.840 --> 00:35:11.300 It's just that it's, you know, from a medical 00:35:11.300 --> 00:35:13.500 point of view, it's more time consuming if you 00:35:13.500 --> 00:35:16.119 have to have two or three points instead of just 00:35:16.119 --> 00:35:20.699 one. Yeah, I want to highlight a couple of things 00:35:20.699 --> 00:35:24.039 after that. One, I don't remember if it was in 00:35:24.039 --> 00:35:26.980 Nature reviews, disease primers or that Lancet 00:35:26.980 --> 00:35:29.780 Commission. I believe it was the Lancet Commission 00:35:29.780 --> 00:35:33.059 that it's mentioned that it's easier to get approval 00:35:33.059 --> 00:35:37.139 for like medical specialists than it is these 00:35:37.139 --> 00:35:42.260 lower level treatment plan options, which is 00:35:42.260 --> 00:35:47.480 a concern. Yep. I remember having a meeting at 00:35:47.480 --> 00:35:51.239 one of the finance companies in New York. I forget 00:35:51.239 --> 00:35:56.519 which one, but Chase or JP Morgan and the physician 00:35:56.519 --> 00:35:59.380 in charge said, yeah, we'll pay you know, any 00:35:59.380 --> 00:36:02.920 kind of medical specialist, you know, but we 00:36:02.920 --> 00:36:06.579 you know, but we won't pay like a education person, 00:36:06.699 --> 00:36:09.119 you know, to work with a child. And they're like, 00:36:09.119 --> 00:36:11.300 because we think we have the cream of the crop, 00:36:11.300 --> 00:36:15.500 you know, reimbursement, but it's like, at some 00:36:15.500 --> 00:36:17.940 point, somebody needs to sit down with the kid 00:36:17.940 --> 00:36:22.860 and work with them. So you can have an you know, 00:36:22.960 --> 00:36:26.260 20 medical specialists, but nobody's going to 00:36:26.260 --> 00:36:30.000 help toilet train that child or You know help 00:36:30.000 --> 00:36:36.639 him learn to say, you know cup So I think that's 00:36:36.639 --> 00:36:40.219 again, that's part of our crazy system in terms 00:36:40.219 --> 00:36:45.000 of And it's just, I mean, they've worked it out. 00:36:45.300 --> 00:36:47.159 Like, I mean, just as a person getting older, 00:36:47.280 --> 00:36:49.539 I've had many more medical procedures in the 00:36:49.539 --> 00:36:52.420 last few years than ever before. And you realize 00:36:52.420 --> 00:36:55.179 that there are tech, you know, technicians, you 00:36:55.179 --> 00:36:57.619 know, if you go to have some kind of cardiology 00:36:57.619 --> 00:37:00.579 exam, you know, somebody prepares you, there's 00:37:00.579 --> 00:37:03.519 a nurse, there's all these different levels before 00:37:03.519 --> 00:37:08.780 you actually see the physician. But they're preparing 00:37:08.780 --> 00:37:11.280 you for whatever the physician is going to do. 00:37:11.619 --> 00:37:13.719 Whereas I think in autism, we just need people 00:37:13.719 --> 00:37:19.119 who are going to work, work with people. And 00:37:19.119 --> 00:37:24.500 that doesn't require a PhD or a PsyD or an MD, 00:37:25.059 --> 00:37:28.440 but it does require thought and kindness and 00:37:28.440 --> 00:37:35.610 planning and experience. So I don't know. those 00:37:35.610 --> 00:37:38.289 people on the front lines, if you will, those 00:37:38.289 --> 00:37:43.429 so -called lower level people, they're the ones 00:37:43.429 --> 00:37:45.590 that's going to have the most impact, I think, 00:37:45.829 --> 00:37:52.449 for the best outcome. I guess one of my concerns 00:37:52.449 --> 00:37:56.989 is with that diverse knowledge and information 00:37:56.989 --> 00:38:00.869 or whatever about this idea of this wide spectrum, 00:38:01.250 --> 00:38:03.789 does that interfere with some of the research 00:38:03.789 --> 00:38:08.699 and financial backing and people that make decisions, 00:38:09.480 --> 00:38:14.500 does that interfere with their recognition? So 00:38:14.500 --> 00:38:18.059 I mean, I don't know. Yeah, I don't either. I 00:38:18.059 --> 00:38:21.059 mean, I do think that even like the levels, you 00:38:21.059 --> 00:38:24.599 know, I mean, the levels in DSM five are there 00:38:24.599 --> 00:38:26.920 because we were told as a committee, we have 00:38:26.920 --> 00:38:30.820 to have levels. And the whole committee was worried 00:38:30.820 --> 00:38:33.880 about them. So they're really written almost 00:38:34.660 --> 00:38:37.059 circularly, because we were really worried that 00:38:37.059 --> 00:38:39.340 there would be people that wouldn't get services 00:38:39.340 --> 00:38:43.039 because they were the wrong level, or that people, 00:38:43.820 --> 00:38:47.019 insurance companies wouldn't continue to do services 00:38:47.019 --> 00:38:50.760 if people weren't moving up levels. And so they 00:38:50.760 --> 00:38:55.139 don't make any sense. You know, and we knew that, 00:38:55.159 --> 00:39:00.710 I mean, but it's how do you I mean, you need 00:39:00.710 --> 00:39:03.050 to have ways of measuring if somebody is making 00:39:03.050 --> 00:39:08.369 progress starting where they are. But that is 00:39:08.369 --> 00:39:11.650 more work. It doesn't fit with our medical system 00:39:11.650 --> 00:39:15.730 on the whole. And the idea that you go in and 00:39:15.730 --> 00:39:18.010 have blood tests and somebody says, aha, you 00:39:18.010 --> 00:39:21.989 have that viral infection, which is just not 00:39:21.989 --> 00:39:30.739 autism. It's not a viral infection. I'm reminded 00:39:30.739 --> 00:39:35.420 a little bit about so those barriers in the medical 00:39:35.420 --> 00:39:40.539 medicine and then also in education that the 00:39:40.539 --> 00:39:44.260 knowledge and information about how someone with 00:39:44.260 --> 00:39:49.139 autism learns and the current classroom situation 00:39:49.139 --> 00:39:53.099 has to my understanding that I've figured is 00:39:53.099 --> 00:39:56.239 like four strikes against autism. The social 00:39:56.239 --> 00:39:59.340 communication dynamic the sensory processing 00:39:59.340 --> 00:40:04.900 dynamic, the speech and language dynamic, and 00:40:04.900 --> 00:40:08.940 then this task switching or this subject switching, 00:40:09.019 --> 00:40:13.420 which is very much against B3. You know, you 00:40:13.420 --> 00:40:16.460 40 to 50 minutes on the subject, then you change 00:40:16.460 --> 00:40:21.179 subjects. 40 to 50 minutes. And if you have B3, 00:40:21.760 --> 00:40:25.480 you hate that. That is very challenging. Yep. 00:40:27.869 --> 00:40:32.030 I mean, I think there's another, you know, hard 00:40:32.030 --> 00:40:35.829 choice because on the one hand, I think having, 00:40:35.829 --> 00:40:39.710 you know, very segregated classes that never 00:40:39.710 --> 00:40:42.250 interacted with anybody except the most autistic 00:40:42.250 --> 00:40:46.409 kids is not great. But I also think, I mean, 00:40:46.690 --> 00:40:50.650 school can be... torture, you know, I mean, I 00:40:50.650 --> 00:40:54.349 still I mean, I do not I don't have autism, but 00:40:54.349 --> 00:40:57.750 I just think how did I spend eight hours a day 00:40:57.750 --> 00:41:01.710 sitting with 34 other people all day long, doing 00:41:01.710 --> 00:41:05.809 what someone else told me to do? And I don't 00:41:05.809 --> 00:41:09.449 have the the sensory issues or the social I mean, 00:41:09.590 --> 00:41:12.530 I'm not that social, but I think that, you know, 00:41:12.530 --> 00:41:15.989 it's it how and what do you come up with as an 00:41:15.989 --> 00:41:18.960 alternative? And I think it's relevant also, 00:41:18.960 --> 00:41:21.980 not just to autism, but even with kids with ADHD, 00:41:22.559 --> 00:41:25.920 for example, different issues. But, you know, 00:41:26.039 --> 00:41:29.760 so being in a big class without a lot of flexibility 00:41:29.760 --> 00:41:33.039 and then changing classes, as you said, I mean, 00:41:33.099 --> 00:41:36.960 I recently was on an IEP meeting for a school 00:41:36.960 --> 00:41:40.840 for a kid I've known forever. And he is going 00:41:40.840 --> 00:41:44.659 into high school. And I was so impressed because 00:41:45.050 --> 00:41:50.849 He is autistic, very smart, but autistic. And 00:41:50.849 --> 00:41:56.010 they were gonna put him in a class that was taught 00:41:56.010 --> 00:42:00.989 by two teachers, and every single class was taught 00:42:00.989 --> 00:42:03.690 by two different teachers. So he was gonna have 00:42:03.690 --> 00:42:10.769 seven classes, each with two teachers. And I 00:42:10.769 --> 00:42:12.630 think it was like the school psychologist, and 00:42:12.630 --> 00:42:16.280 we were just like, oh. This is going to be awful. 00:42:16.860 --> 00:42:19.659 No, and the school psychology has just said, 00:42:19.699 --> 00:42:22.280 you know what? Why don't we not do this like? 00:42:22.510 --> 00:42:24.869 It would be better for him just to have somebody 00:42:24.869 --> 00:42:27.590 who's responsible for getting him, you know, 00:42:27.650 --> 00:42:29.710 I mean, he really does not need an aide following 00:42:29.710 --> 00:42:32.869 him around all the time, but somebody who's responsible 00:42:32.869 --> 00:42:34.750 for him all the time and then let him do what 00:42:34.750 --> 00:42:36.969 the other kids are doing. And then we're going 00:42:36.969 --> 00:42:40.070 to have him have fewer classes, not because he's 00:42:40.070 --> 00:42:42.769 not smart enough, because it's just too many 00:42:42.769 --> 00:42:45.750 changes. Yeah. And trying to help his family 00:42:45.750 --> 00:42:48.389 and him realize maybe it's going to take you 00:42:48.389 --> 00:42:51.980 if you want. you know, an honors high school 00:42:51.980 --> 00:42:54.659 diploma. It might take you an extra year, but 00:42:54.659 --> 00:42:57.980 you do not have to have seven classes. You know, 00:42:58.039 --> 00:43:01.840 that is not set in stone for the rest of your 00:43:01.840 --> 00:43:05.059 life. Let's just get you through this. And maybe 00:43:05.059 --> 00:43:08.239 he can have two art classes because he's a wonderful 00:43:08.239 --> 00:43:11.980 artist. And it's not that we're giving up on 00:43:11.980 --> 00:43:15.460 everything else. It's just let's pace it. Um, 00:43:15.539 --> 00:43:18.239 but it's very hard, you know, the idea of two 00:43:18.239 --> 00:43:22.500 teachers in seven classes, 14 teachers, you know, 00:43:22.500 --> 00:43:25.539 you're right. And I mean, we've been having him 00:43:25.539 --> 00:43:27.940 like leave class early. So he's not in the hallway, 00:43:28.039 --> 00:43:31.860 noisy, go to class. I mean, it's just anyway. 00:43:33.539 --> 00:43:36.380 It's a concern for me. And from my experience 00:43:36.380 --> 00:43:41.559 as well as if you have autism and you're, you're 00:43:41.559 --> 00:43:46.079 navigating society over years. of doing this, 00:43:46.719 --> 00:43:50.699 all of that expectation and that just plasticity 00:43:50.699 --> 00:43:54.679 of how you're shaped and developed is very opposing. 00:43:55.579 --> 00:44:00.019 It's many challenges. Yeah, it is. It absolutely 00:44:00.019 --> 00:44:06.539 is. And it shouldn't have to be, but it is. Yeah. 00:44:06.820 --> 00:44:10.420 And for education, it's hard to change because 00:44:10.420 --> 00:44:13.039 they have to teach the general population first. 00:44:13.179 --> 00:44:18.039 Right. and then these so -called outliers. Yeah, 00:44:19.500 --> 00:44:22.860 it's tough. I'm anxious to see how that evolves. 00:44:24.320 --> 00:44:27.760 Which brings me to another question. What does 00:44:27.760 --> 00:44:30.639 autism look like in 10 years, in your opinion? 00:44:30.960 --> 00:44:39.639 Oh, good question. Good question. Actually, I 00:44:39.639 --> 00:44:43.519 don't know. I mean, I hope that there's less 00:44:43.519 --> 00:44:48.940 conflict between, you know, the autistic advocacy 00:44:48.940 --> 00:44:53.539 community and other people. So I feel like the, 00:44:53.539 --> 00:44:57.519 you know, autism advocates have really important 00:44:57.519 --> 00:45:00.880 things to say, but sometimes it gets overwhelmingly 00:45:00.880 --> 00:45:03.639 negative, at least for me as a practitioner. 00:45:04.179 --> 00:45:07.179 And I hope that gets resolved. I hope we can 00:45:07.179 --> 00:45:12.090 work out. ways of communicating that aren't offensive 00:45:12.090 --> 00:45:20.530 to people and move toward strategies that people 00:45:20.530 --> 00:45:27.710 aren't so negative about. So I hope that improves 00:45:27.710 --> 00:45:30.570 because I think that's a hard thing right now 00:45:30.570 --> 00:45:35.329 for many practitioners. And you have people who 00:45:35.329 --> 00:45:40.710 just jump into it full force. But it's just as 00:45:40.710 --> 00:45:44.750 someone who often sees smaller kids. And I do 00:45:44.750 --> 00:45:48.349 think things like behaving yourself reasonably 00:45:48.349 --> 00:45:51.989 are really important to allow them access to 00:45:51.989 --> 00:45:55.070 things they want to do. And somebody has to help 00:45:55.070 --> 00:45:59.409 the kids figure that out. So that's something 00:45:59.409 --> 00:46:05.710 I hope gets better. I think that we need to know 00:46:05.710 --> 00:46:10.400 more for research. I feel like genetics is going 00:46:10.400 --> 00:46:14.900 to continue on with a ton of money. But I think 00:46:14.900 --> 00:46:18.639 the reality is that the miracles that are going 00:46:18.639 --> 00:46:20.719 to come for genetics are not going to affect 00:46:20.719 --> 00:46:23.739 your average autistic person. They're going to 00:46:23.739 --> 00:46:27.039 affect someone with some very rare disorder that 00:46:27.039 --> 00:46:30.380 someone happens to figure out. You can give them 00:46:30.380 --> 00:46:33.000 a shot when they're born or whatever, and that's 00:46:33.000 --> 00:46:37.500 not going to affect. Probably anybody that I 00:46:37.500 --> 00:46:42.900 see or you see I mean that will be great if it's 00:46:42.900 --> 00:46:45.860 true So I think we need we need to understand 00:46:45.860 --> 00:46:48.440 more the relationship between how does the brain 00:46:48.440 --> 00:46:51.679 actually work? Not just in autistic people, but 00:46:51.679 --> 00:46:55.840 anybody and and then what can we? What does that 00:46:55.840 --> 00:46:58.800 mean for what we do because we're human beings. 00:46:58.800 --> 00:47:00.920 We're like not little brains walking around. 00:47:00.920 --> 00:47:05.619 We're whole people So I hope that people move 00:47:05.619 --> 00:47:11.139 in that direction. And then I hope that there's, 00:47:11.280 --> 00:47:14.000 I mean, I think early intervention is really 00:47:14.000 --> 00:47:17.880 important, but I think that we need to recognize 00:47:17.880 --> 00:47:22.239 that early intervention isn't an answer in itself. 00:47:22.400 --> 00:47:24.539 I mean, you want to get kids started and you 00:47:24.539 --> 00:47:27.579 want to move forward and particularly in language. 00:47:27.949 --> 00:47:30.829 We need to see changes early on or they're going 00:47:30.829 --> 00:47:34.590 to be very slow. But I think we want to also 00:47:34.590 --> 00:47:37.769 recognize what happens for school age kids and 00:47:37.769 --> 00:47:40.369 what can we do better and what happens in teenage 00:47:40.369 --> 00:47:43.750 years and adults. And I hope that there will 00:47:43.750 --> 00:47:49.630 be better services and more knowledge about what 00:47:49.630 --> 00:47:52.909 we could do to make life easier or better for 00:47:52.909 --> 00:47:56.960 people and better services for adults. Yeah. 00:47:56.960 --> 00:48:01.260 Yeah. Well said. That concern is like the the 00:48:01.260 --> 00:48:04.019 trend of I guess it's now one in thirty -six 00:48:04.019 --> 00:48:08.599 children. It's like. Yeah. When does that balance 00:48:08.599 --> 00:48:11.719 or when does that stop trending that way? Yeah. 00:48:11.719 --> 00:48:16.639 I don't know. It's very concerning. Okay. So, 00:48:16.639 --> 00:48:18.840 so last question and I'll I'll let you go Doctor 00:48:18.840 --> 00:48:23.980 Lord. If you had a magic wand, what would you 00:48:23.980 --> 00:48:26.639 like to know about autism? If you could have 00:48:26.639 --> 00:48:43.340 one question answered. Oh, goodness. I don't 00:48:43.340 --> 00:48:47.019 know. I don't think there's one. I think it's 00:48:47.019 --> 00:48:59.190 probably different for different people. I guess 00:48:59.190 --> 00:49:03.630 I would like to know better, how do we find the 00:49:03.630 --> 00:49:08.409 strengths in an individual child or adult that 00:49:08.409 --> 00:49:16.110 will most help that person have a happy life? 00:49:16.909 --> 00:49:19.730 And how do we do that? And I don't think there's 00:49:19.730 --> 00:49:24.869 going to be one answer, but I feel like we're 00:49:24.869 --> 00:49:28.789 grappling with that all the time. But I don't 00:49:28.789 --> 00:49:31.929 know. I mean, we just look at what we can do 00:49:31.929 --> 00:49:37.289 and make guesses. Those strengths are in there, 00:49:37.389 --> 00:49:40.349 too, somewhere. They are. They absolutely are. 00:49:40.710 --> 00:49:45.789 They are. I'm satisfied and pleased that you 00:49:45.789 --> 00:49:49.230 said that gives them a happy life, leads them 00:49:49.230 --> 00:49:56.269 to a happy life. Yeah. I mean, people can be... 00:49:57.059 --> 00:49:59.460 I mean, I guess it's true for anybody. You can 00:49:59.460 --> 00:50:02.360 be happy and people can be not happy. But how 00:50:02.360 --> 00:50:05.760 do you do that? How do you support that? And 00:50:05.760 --> 00:50:09.679 I think we'll get better at it, but I don't know 00:50:09.679 --> 00:50:13.420 the answer. If you figure it out, Ryan, let me 00:50:13.420 --> 00:50:17.900 know. I would love to. I would love to let you 00:50:17.900 --> 00:50:24.010 know. That would be my pleasure. Well, Dr. Lord, 00:50:24.369 --> 00:50:26.750 I can't thank you enough for your time. I know 00:50:26.750 --> 00:50:30.869 you're very busy impacting the world and the 00:50:30.869 --> 00:50:33.929 field of autism. And I very much appreciate that. 00:50:34.809 --> 00:50:39.250 I've followed your work and I just love reading 00:50:39.250 --> 00:50:47.309 your material. So thank you. Thank you so much. 00:50:47.510 --> 00:50:49.610 Well, my pleasure. It's very nice to meet you, 00:50:49.710 --> 00:50:52.769 Ryan, and I wish you luck with the podcast and 00:50:52.769 --> 00:50:57.809 your own studies. Thank you. Yeah. All right. 00:50:58.030 --> 00:51:05.070 Bye. Bye. Thank you for listening to the conversation 00:51:05.070 --> 00:51:08.789 with Dr. Catherine Lord. If you are listening 00:51:08.789 --> 00:51:12.530 to the episode or listening to the podcast, please 00:51:12.530 --> 00:51:16.730 feel free to leave a review or rating. And podcasting 00:51:16.730 --> 00:51:20.809 reviews, ratings, and downloads are huge. And 00:51:20.809 --> 00:51:25.130 I very much appreciate your feedback. You can 00:51:25.130 --> 00:51:32.969 contact me at info .fromthespectrumatgmail .com. 00:51:34.389 --> 00:51:37.690 And thank you for listening to From the Spectrum 00:51:37.690 --> 00:51:38.469 Podcast.