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Welcome to From the Spectrum Podcast. This is a podcast about autism. It is my

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goal to explain what is autism. I plan to use a mixture of scientific literature,

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personal experience, and opinion. With opinion, I will explain why. I feel the

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way I do and give examples. I will provide links to various references for each episode.

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For each episode, we will discuss various aspects of autism. For today's episode,

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it is my pleasure, with overwhelming excitement, to announce the first guest of

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the podcast. From UCLA, George Tarzan Distinguished Professor of Psychiatry and

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Education, Dr. Catherine Lord. Dr. Lord is not just any guest. When I and most

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others think about autism research, knowledge, and education, there's a

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short list at the top. The top of the top tier. With numerous contributions, such as

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the Autism Diagnostic Interview or the ADI, the Social Communication Questionnaire,

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and the Autism Diagnostic Observation Schedule or ADOS. Two are considered the

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gold standards in autism assessment. In addition to back my thoughts about Dr.

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Lord's contributions to autism, a paper released in 2023 in Frontiers in

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Psychiatry shows she is the most impact and productivity in autism from the

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years 2011 to 2022. As you listen, please consider some potential highlights of our

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conversation. Dr. Lord's journey into autism and notice despite the highest

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impact score in autism research, she still takes referrals and sits in on IEP

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meetings. The evolution of the autism assessment process and the evolution of

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the ADOS from her basement and being overran by demand to the gold standard in

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autism assessment. How centralized money, medicine, and education interacts with

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autism and the language used in policy and politics and in the DSM. Remember my

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previous comments about the DSM. Don't get hitched on this book. And finally, how

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the word spectrum is interpreted in professional and in the public. An update

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on profound autism and the future of autism.

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And now my discussion with Dr. Catherine Lord. Dr. Lord, why don't you begin with

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just telling us when did you know autism was going to be your focus? I think as

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an undergraduate, I worked for LowVos doing very traditional behavioral things

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and I worked with two kids who I just loved and I by the end of working with

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him for a couple years I was pretty negative about simple behavioral

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approaches. I felt like boy this is not the answer but I loved the kids and then

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I went to graduate school and deliberately went away from behaviorism.

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But in my last year of graduate school I ended up just by accident teaching a

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class of kids. It was just after IDA so when special ed kids were schools were

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required to let kids into school kids with disabilities and I taught a class

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of kids coming to school for the first time who were between three and eight

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years of age. This was in rural Vermont and in fact about half the kids had

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autism. All kinds of things. I mean they ranged from you know a really smart

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little girl who was blind who also had who had autism who could play the piano

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like you never heard it and who used to shout at herself. Tammy stop playing

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that goddamn piano which was very embarrassing but who you know to a child

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who couldn't talk and everything in between and and I think then I just was

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like oh my gosh I really like these kids I don't know why and and so then I went

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when I was had to do an internship I also was trying to find a position where

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there were people very committed to clinical work but who also did research

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and it was really hard because I found great researchers who didn't care at all

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about clinical work and then I also found really good clinicians but who are not

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reading or doing any research and then I got the position in North Carolina at

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Teach which at the time was I mean it wasn't brand new but it was just folding

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out and that was an amazing experience so that just did it for me. So as you

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described those children long ago it seems like correctly from wrong the

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profession in society didn't really recognize it yet as this big continuum

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or spectrum like you described it is that correct? That is absolutely true I

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mean you know I think Lovaas took on autism because he was very interested in

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behaviorism and he thought that with these techniques we can teach anybody

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anything and then he'd heard of these kids who weren't communicating in an

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ordinary fashion so he literally I mean what was amazing was he brought kids out

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of a state hospital and they lived here on campus and the idea was we were going

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to cure these kids which is ridiculous but and then I worked with two kids and

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one little guy never did what I was trying to get him to talk he never talked

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we were both dying of boredom so we spent a lot of time in the bathroom you

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know I got him to you know wash his hands and we learned how to get paper towels

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and we were really I mean about ready to throw spitballs I think and then the

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other guy was a kid who I think had stopped talking when he was sent to the

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institution once he came here and he had this army of predominantly young

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women working with them he started talking and he was ahead of me every

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step of the way you know I would be like all right we're gonna work on

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pronouns and he would be saying you would be using pronouns you know so that

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was very interesting too so I just felt like there's so much we don't

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understand here that and I'm not completely negative about all behavioral

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techniques but I think you know it it it was so oversimplified that we what we

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were gonna do and what were what were we trying to accomplish yeah that's a

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great that's a great mindset the idea of like the ABA or this behaviorism is

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interesting to me whereas it's it's another human being instructing another

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human being on on what they should be doing or ought to be doing but who's to

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say that the the instructing human being you know it knows what's best for

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that in this case a child yeah so that's the hard part you know and I think

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with these two kids we were way off because one of them you know he couldn't

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imitate sounds so for me to spend for us to spend 40 hours a week trying to get

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him to say bah and the idea that he was gonna say bah in order to get a Frito

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he the poor kid couldn't do it but he could do other things no and then the

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other kid was ahead of me he was like I was you know he could have taught me the

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sad thing is he went back to the institution and stopped talking again

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and so we were just doing the I mean we were doing something right which was

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giving him all this positive attention but the actual teaching of language was

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neither here nor there and I do have very mixed feelings I mean I think

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hopefully this I can say this well because I do think sometimes we have to

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say like sometimes I have to say look I as an adult I do know more than you as a

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three-year-old about what life is like and what you're gonna need to learn but

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also I want to respect what you are good at and what you're interested in and

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the more I can do that the more we're gonna learn together absolutely that's

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and that's the trade-off and I think we've had you know real pushback from

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the autistic community like let's not you know I I shouldn't be making any

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decisions but sometimes I feel like you know I mean we have some patients who

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are periodically physically aggressive and it just this is not good it just

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harms them and it's such a shame you know because it restricts what they can do

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and so I do think somebody then has to jump in and say alright how do we help

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them do other things you know and and so you do need somebody jumping in on the

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other hand I'm not trying to say like don't look at lines if you like lines

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you can look at lines and if you can draw by you know that is wonderful so

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let's build on your strength but I'm still I am gonna try to keep you or from

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pulling your mother's hair or whatever you know yes this given a little bit of

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different perspectives can go a long way yeah so before the creation of the

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ADI and social communication questionnaire and the ADOS what was the

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condition of the autism assessment like well I think I mean it's interesting

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because one of the things that teach did in North Carolina was they were they

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were one of the first groups to have like a standard assessment so they had

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something called the PEP the psychoeducational profile and so the there

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was a standard assessment but it wasn't it didn't meet like the standards for

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testing that you know some of the famous tests like the SAT or the whisk or the

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arm it didn't meet those standards but they were a group that really tried to

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help figure out what do you do when you're face-to-face with the kid you

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never met before and how do you figure out what they can do and one of the

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concepts they had which we really used especially in the ADOS is this idea of if

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you don't if you present a task to a kid and they don't seem to be able to do it

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as you think they should what do you do next like how do you see if they can do

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it if you change something you know if instead of putting out 20 blocks at once

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you hand them one at a time you know is it just that there's too much stuff or

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is it that the blocks are wooden and they don't like wood or you know those

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kinds of things and so this idea of like a merging skill and being able to say

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alright this is what this is how I needed to change in order to help this the

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child that I'm working with be able to accomplish the task and then how can I

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use that information in planning what we're going to do next okay yeah so as

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you as you describe such details about the instruments from from a creator now

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we all know that these these instruments get revised and modified

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throughout but how do you know when they need revised or modifications oh goodness

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they always need revisions I think the reality is they're always they are not

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perfect so they always you know we always know we always have a list of like 10

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or 20 things that we want to improve I mean I think at this point we are

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partly captive to the fact that they're published by a business and so and I

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think that's you know that is just a practicality you know for a long time we

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literally made these things in my basement and then you know my husband was

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like no plastic bags in the bathroom it was just crazy and we were getting hate

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mail from plate people saying why can't you get get this to us you know we're a

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little bit in that situation now because we tried to come up with a shorter

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version and we're making kits but so I went to a company and they make it but

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then what happens you know in terms of revisions is very dependent on them so I

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think the revisions come both from us knowing this didn't work that well or

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but also from changes in the field you know for example we're seeing many more

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adults who haven't had a diagnosis before who are quite bright and that is

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different than what we saw you know even 25 years ago when not I mean that we

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definitely saw some autistic kids who are very smart but we also that it was

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just a different group you know who is who is referred in preschool is different

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than who is referred at school age and it's different from who's right so those

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kinds of things say wait a minute we're gonna have to figure out better ways of

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addressing this so always I would say you know but then the publisher like

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there's gonna be a revised ADAS and we have been bugging the publisher for

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years to do it and now they're finally ready so we are working away at a new

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version but it's you know we do it and then it takes the publisher another

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whole year to lay out all the forms and figure out what they're doing but you

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should tell people that are listening we have lists you know if people have

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complaints let us know we will file them away we can't do anything often

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immediately but we we are listening and trying to figure out how to make the

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thing better oh yeah I appreciate that I I read I read about how much input you

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you you take on from like people in the community and people with autism so with

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the current condition of the autism assessment what do you think the the

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overall assessment needs what are the biggest gaps that's a really good

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question I mean I think I think how you put information together is we have not

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specified that we really have left it up to the clinician so you may have you

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know these days you may have a parent who gives reports on the ADI which is this

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long interview then you may see the person and do an ADOS which is just

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scored the ADOS is scored from the time you start it to the time you finish it

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like 45 minutes you don't score anything else you know so it's there's

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because that you wanted to be reliable but then also you have information about

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like what is what are the other things that are happening in people's lives

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that for example a parent might know not me might not know so how do you put that

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all together and I think we we don't tell people how to do that we really

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leave it up to the clinician and I think that's that is both good because you

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hope the clinicians are good working with whoever the person is who's come for

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the diagnosis but it also means people don't know what to do if you're getting

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you know if you have somebody who really feels like they have autism and you see

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them on the ADOS and they don't look like they have autism what do you do you

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know or you have a parent who is describing all kinds of things and you

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don't see it what do you do and and so that that's a gap I think we also so

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far the ADOS has worked the ADOS at least has worked quite well across different

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cultures but it really is which includes sort of gender so but it really is up to

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the clinician to modify things you know to say wait a minute I have in front of

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me you know a young woman who is you know interested in princesses and not in

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cars so I need to pull out this toy or whatever and and that's not as well

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specified as it should be of how how can you be flexible within it so I think

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that's another issue and it's I mean we are dealing with the practicalities of

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a medical system particularly in the United States you know that's very

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focused on procedures like what do you do in the office you know that's how

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billing works and often you need other information and so how do you how do you

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incorporate that information you know both from the person seeking the

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diagnosis but also from from other people who might know them in other

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circumstances okay yeah yeah and something that something that interests me

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is especially now more and more is this idea of early screening even if it's by

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like a PCP so I have a couple of questions on that is one is does this

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screening is it as standardized as let's say an assessment or one of these

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instruments like how do we know that the PCP is equipped and can handle this

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screening and then this is yet does the screening help the overall process of

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the assessment now we know that it would help the treatment plan the earlier

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you get the treatment the better off the better the outcome but does that kind of

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help the assessment at that younger age as well I mean I think the screenings

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help get it get people to think about the possibility of autism you know at

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this point most of the screening is either questionnaires for parents

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filling out or very brief things that our people are experimenting with so in

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terms of like showing a kid an iPad and seeing if they look at two children

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playing together or they look at a tree you know but there isn't yet so there's

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beginning evidence that those might provide you useful information but it's

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very very new and I think you're right how people are going to use that

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information is not clear I think if people use it like one source of

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information you know it's just like one thing then then that's fine I mean it

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gives them an idea of like wait a minute I need to stop and worry about this so

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that's that's good it gets people thinking about autism but if people use

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it in place of like actually spending time with the child and figuring out how

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does the child go about doing things and what are they interested in and how can

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you get them to do the things like talking that you want them to do I think

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that would be really harmful so I think the screening if it's if it's just

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getting people to think about stuff it's fine but if it's treated as an answer

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it's not like we just got a referral of a child who has been screened numerous

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times never got a diagnosis has a developmental delay category and he's in

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a preschool program he's been there for a year and he has I think he's got autism

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and nobody has really looked at this carefully it's like what are you thinking

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you know so that I feel like it's not an end it's a beginning you know and I

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think it's you know if you think about like going to a doctor and they do like

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a blood panel you know mostly they don't stop that that's a start it's not a

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be it's not an end you know unless they say ah ha you have strep throat I'm

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putting you on this most of the time it's just a beginning and that that's

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where it's important yeah yeah okay so this idea of as you describe that that

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child in preschool going through those numerous screenings it's like this idea

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of spectrum as we kind of lump everybody with autism into this white

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spectrum I'm kind of concerned that for a couple of different reasons maybe the

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biggest one is how wide or how much of a variety there is let's say from like a

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level one high functioning to a level three that has completely different

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looks to it and my concern is how how do people from the outside looking in how

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do they know like how do we teach society about this broad spectrum yeah I

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I mean I agree I don't know I think part of the problem I mean the reason why we

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would start with autism and not just say alright it's actually three different

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things or two different things I think there's two reasons one is that at

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early ages you can't tell we can tell that a two-year-old or three-year-old

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has autism we can't predict at especially at two we can't predict are they

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going to be even if that you know are they going to be brilliant with autism

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and you know getting a PhD in physics or are they going to be nonverbal so we

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we can't tell and we can begin to tell it's gradual at like three and four and

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five but we can't tell with the tiny kids and we want to get them in services I

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mean one of the things our Lancet Commission really tried to say is kids

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should be able to get services before they even get a full diagnosis you know

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if you're worried about the kid get them in and then say alright sometime this

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year we got to do a better assessment so we know him better so he's not like the

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little guy just described but let's not wait but we don't know so that's one

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reason why we need sort of autism spectrum the other reason is there's a

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ton of people in the middle between the physicist and the person who can't talk

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and what do we do with them I mean we've been working at trying to have a

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better definition of profound autism of like people that are really very

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handicapped and we can do that but then what what about everybody else and

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there's such there's still a spectrum from people that are really totally

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independent and just have some struggles with some of the social things or some of

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the sensory things that affect people with autism and then there's people who

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are really you know very their lives is very different are very different because

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of the autism you know even though they're bright and they have other you

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know they have many strings so where do we put them and I don't know and the

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trouble is they're not those people are mostly not making podcasts they're you

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know they're there and we see them in the clinic but they're not and for now

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actually most many of them are not getting help at all and so what do we do

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about them so I don't know but I do I do I don't feel like I have the answer at

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all you know and I get why you know a few years ago we thought oh it'll be

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genetics everyone will know what their genetic disorder is and they won't need

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autism but the reality is the genetics even when you know what the genetics are

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you know one-third of the people might have autism and one-third of the people

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have epilepsy and one-third of the people you know there's there's enough

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there is no single genetic a cause of autism only you know and then most people

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with autism don't have these so I don't know I'm ready to listen to you Ryan

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and what what we should do that would be more helpful and it's so confusing to

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families I think you know I feel like into the public because the public

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thinks everybody you know people with autism are like the good doctor which

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is just not true but there are people who do really well yeah so I don't know I

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I don't know it's it's easier for society looking in to recognize like the

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good doctor and then recognize the profound yeah autism but there's so much

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in between yeah and the the genetic not one thing and not even if you have that

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genetic dysfunction I guess if you will it doesn't necessarily mean autism yep

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well there's a whole patchwork of things going on way upstream in our

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biology that is just hard to hard to capture this idea of the spectrum though

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is like you know I get concerned about how people view it and not having

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distinct edges I heard dr. Vinster Vanderwill I believe talk about not having

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edges so we can you know better have more understanding of like this group of

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people with autism and this group of people with autism but there's just so

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much yeah I'm hoping that since you mentioned and we touched on profound

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autism and the Lancet Commission I'm hoping that you can give an update that

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was released in 2022 I believe and just seeing how that goes or how that's going

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yeah I don't know I think you know I mean one of the things I want to say

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about the Lancet Commission is profound autism was just a tiny part of it but

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it's gotten more attention than anything else and the major thing that the

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Lancet Commission was trying to say is we need more research on what actually

286
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makes a difference in people's lives and that we do need to work with the

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autistic community you know both people with autism and also parents to figure

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out what makes a difference because we know we know so much more about

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biology which is very interesting but is on the whole has not helped and so it

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will help I think someday but it's very long term and and we need to know more

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just like how many hours of something does a kid need and how do you decide and

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and you know does telehealth CBT work you know for whom and why not or why and

293
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those kind of things so that was the main point and then also across cultures

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because you know most of the research has really come from Europe or the US or

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to some extent some of the wealthier Asian company countries but there's a

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lot of autistic people out there who don't get anything so that I'll just put

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in my push for it because profound autism just hit the news more I think

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that you know there's now to you know there's now the profound autism alliance

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and there's you know I think both you know that the major research

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organizations are recognizing profound autism there was a lot of conflict over

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what would go into you know they're they're trying to pass a new bill for

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autism cares in Congress and there were really very different groups who are

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saying you know if you mentioned profound autism we won't sign it and then

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other people saying you have to mention it or we won't sign it I think they've

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agreed on words you know you know and but I'm not sure even what those words

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are but I think the idea of like high support needs so I think that's a big

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step and at least recognizing you know it's just ironic because most of the

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biological research on autism that at least the genetics has been on kids who

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are very handicapped and then all the other research is mostly on people who

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are not and so there's just again this middle that doesn't get addressed and

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then there's also the we need behavioral research on people that have more

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severe issues and we need well I don't know how much we need the genetics of

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brighter people I'm not I'm more skeptical that's I'm skeptical that's

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going to help a whole lot but anyway it's just I think people are getting more

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used to profound autism and the idea but it but there's various groups you know

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they're groups that want us to declare who has profound autism when they're

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three years old which I think is really wrong because you don't know no on the

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other hand I think accepting the fact that there is this broad spectrum and

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sometimes people who can't speak for themselves are left out and that we do

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need families and we need to recognize that someone needs to advocate for these

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people because they're they're not able to talk to you know write books or or

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speak or they can speak but they they can't really stick up for themselves

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and what they need yeah I I just read a paper and I think it just came out about

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this University or research center claim that they could predict profound

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autism versus non-profound autism based off of the size of a brain or

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something in the cell biology if I'm not mistaken I thought that was kind of

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interesting I don't know I mean they might I mean I do think there's certain

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genetic disorders that are very much tied to intellectual disability and

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often seizures and so the chances if you have those of having if you have

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autism which not everybody does of also having intellectual disability are

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high but I would hate for people to be limiting kids when they're very little

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you know saying they're never going to be able to do this or that you know I

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think I mean what we're interested in you know just because we've been doing

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research so long is the trajectory like what is the how are you changing and if

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you can use that plus what who is helping and who is not then I think that's

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much more useful it's just that it's you know from a medical point of view it's

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more time-consuming if you have to have two or three points instead of just one

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yeah I want to highlight a couple of things after that one I don't remember

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if it was in nature reviews disease primers or that Lancet Commission I

340
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believe it was the Lancet Commission that it's mentioned that it's easier to

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get approval for like medical specialists than it is these slower level

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like treatment plan options which is a concern yep that's I remember having a

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meeting at one of the finance companies in New York I forget which one but like

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sound like Chase or JP Morgan or and the physician in charge said yeah we'll pay

345
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you know any kind of medical specialist you know but you know but we won't pay

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like a education person you know to work with a child and they're like because

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00:36:09,240 --> 00:36:15,040
we think we have the cream of the crop you know reimbursement but it's like at

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some point somebody needs to sit down with the kid and work with them you know

349
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so you could have an you know 20 medical specialists but nobody's going to help

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00:36:26,360 --> 00:36:35,440
toilet train that child or you know help him learn to say you know cup so I

351
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think that's again that's part of our crazy system in terms of medicine and

352
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it's just I mean it they've worked it out like I mean just as a person getting

353
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older I've had many more medical procedures in the last few years than

354
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ever before and you realize that there are tech you know technicians you know if

355
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you go to have some kind of cardiology exam you know somebody prepares you

356
00:37:00,080 --> 00:37:04,400
there's a nurse there's all these different levels before you actually see

357
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the physician but they're preparing you for whatever the physician is going to

358
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do whereas I think in autism we just need people who are going to work you

359
00:37:15,400 --> 00:37:22,840
know work with people and that's that doesn't have to doesn't require a PhD

360
00:37:22,840 --> 00:37:29,680
or a SID or an MD but it does require thought and kindness and planning and

361
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experience so I don't know that that idea of those people on the front lines if

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you will those so-called lower level people they're they're the ones that's

363
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going to have the most impact I think in the best outcome yep and that's I guess

364
00:37:51,520 --> 00:37:57,400
one of my concerns is with that diverse knowledge and information or whatever

365
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about this idea of this wide spectrum does that interfere with some of the

366
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research and financial backing and people that make decisions does that

367
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interfere with their recognition so I mean I don't know yeah I don't either I

368
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mean I do think that even like the levels you know I mean the levels in DSM 5

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are there because we were told as a committee we have to have levels and

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the whole committee was up worried about them so they're really written almost

371
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circularly because we were really worried that there would be people that

372
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wouldn't get services because they were the wrong level or that people insurance

373
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companies wouldn't continue to use services if people aren't moving up

374
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levels and so they don't make any sense you know and we knew that I mean but

375
00:38:56,440 --> 00:39:02,000
it's how do you you know I mean you need to have ways of measuring if

376
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somebody's making progress starting where they are but that is more work than

377
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it doesn't fit with our medical system on the whole you know and the idea that

378
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you go in and have blood tests and somebody says aha you have that viral

379
00:39:18,880 --> 00:39:29,280
infection or you know which is just not autism it's not a viral infection and

380
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I'm reminded a little bit about so those barriers in the medical medicine and

381
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then also in education that the knowledge and information about how someone

382
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with autism learns and the current classroom situation has to my

383
00:39:50,960 --> 00:39:56,160
understanding that I've figured is like four strikes against autism the social

384
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communication dynamic the sensory processing dynamic the speech and

385
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language dynamic and then this task switching or the subject switching which

386
00:40:09,160 --> 00:40:15,680
is very much against B3 you know you 40 to 50 minutes on the subject can you

387
00:40:15,680 --> 00:40:23,840
change subjects 40 to 50 minutes and if you have B3 you hate that that is very

388
00:40:23,840 --> 00:40:32,320
challenging yeah so I mean I think there there's another you know hard choice

389
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because on the one hand I think having you know very segregated classes that

390
00:40:39,040 --> 00:40:44,920
never interacted anybody except the most autistic kids is not great but I also

391
00:40:44,920 --> 00:40:52,880
think I mean school can be torture you know I mean I still I mean I do not I

392
00:40:52,880 --> 00:40:57,920
don't have autism but I just think how did I spend eight hours a day sitting

393
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with 34 other people all day long doing what someone else told me to do and I

394
00:41:05,320 --> 00:41:10,840
don't have the the sensory issues or the social I mean I'm not that social but I

395
00:41:10,840 --> 00:41:16,760
think that you know it's it how and what do you come up with as an alternative and

396
00:41:16,760 --> 00:41:22,640
I think it's relevant also not just to autism but even with kids with ADHD for

397
00:41:22,640 --> 00:41:29,040
example different issues but you know so being in a big class without a lot of

398
00:41:29,040 --> 00:41:35,320
flexibility and then changing classes as you said I mean I recently was on a IEP

399
00:41:35,320 --> 00:41:41,320
meeting for a school for a kid I've known forever and he is going into high

400
00:41:41,320 --> 00:41:49,200
school and I was so impressed because he has he is autistic very smart but

401
00:41:49,200 --> 00:41:56,400
autistic and he the they were going to put him in a class that was taught by two

402
00:41:56,400 --> 00:42:01,920
teachers and different class every single class was taught by two different

403
00:42:01,920 --> 00:42:09,640
teachers so he was going to have seven classes each with two teachers and the

404
00:42:09,640 --> 00:42:14,080
I think it was like the school psychologist and we were just like oh

405
00:42:14,080 --> 00:42:19,840
this is going to be awful you know and the schools like college has just said you

406
00:42:19,840 --> 00:42:24,240
know why don't we not do this like it would be better for him just to have

407
00:42:24,240 --> 00:42:28,480
somebody who's responsible for getting him you know I mean he really does not

408
00:42:28,480 --> 00:42:32,880
need an aide following him around all the time but somebody who's responsible

409
00:42:32,880 --> 00:42:36,600
for him all the time and then let him do what the other kids are doing and then

410
00:42:36,600 --> 00:42:40,840
we're going to have him have fewer classes not because he's not smart enough

411
00:42:40,840 --> 00:42:46,160
because it's just too many changes yeah and trying to help his family and him

412
00:42:46,160 --> 00:42:51,880
realize maybe it's going to take you if you want you know an honors high school

413
00:42:51,880 --> 00:42:56,320
diploma it might take you an extra year but you do not have to have seven

414
00:42:56,320 --> 00:43:02,200
classes you know that is not set in stone for the rest of your life let's

415
00:43:02,200 --> 00:43:07,040
just get you through this and maybe he can have two art classes because he's a

416
00:43:07,040 --> 00:43:13,000
wonderful artist and it's not that we're giving up on everything else it's just

417
00:43:13,000 --> 00:43:19,240
let's pace it but it's very hard you know the idea of two teachers and seven

418
00:43:19,240 --> 00:43:25,440
classes 14 teachers you know you're right and I mean we've been having him

419
00:43:25,440 --> 00:43:29,960
like leave class early so he's not in the hallway noisy go to class I mean it's

420
00:43:29,960 --> 00:43:36,920
just anyway it's a concern for me and for my experience as well as

421
00:43:36,920 --> 00:43:46,960
if you have autism and you're navigating society over years of doing this all of

422
00:43:46,960 --> 00:43:51,840
that expectation and that just plasticity of how you're shaped and

423
00:43:51,840 --> 00:44:00,000
developed is very opposing it's it's many challenges yeah it is it it absolutely

424
00:44:00,000 --> 00:44:09,120
is and it's it it shouldn't have to be but it is yeah and for education it's

425
00:44:09,120 --> 00:44:13,280
hard to change because they have to teach the general population first right

426
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and then you know these so-called outliers yeah yeah it's tough I'm

427
00:44:20,560 --> 00:44:27,320
anxious to see how that evolves which which brings me to another question what

428
00:44:27,320 --> 00:44:34,040
does autism look like in 10 years in your opinion oh good question good question

429
00:44:34,040 --> 00:44:45,440
um actually that's I don't know I mean I hope that there's less conflict between

430
00:44:45,440 --> 00:44:52,800
you know the autistic advocacy community and other people so I feel like I feel

431
00:44:52,800 --> 00:44:58,440
like the you know autism's advocates have really important things to say but

432
00:44:58,440 --> 00:45:03,640
sometimes it gets overwhelmingly negative at least for me as a practitioner

433
00:45:03,640 --> 00:45:10,720
and I feel I hope that gets resolved I hope we can work out ways of communicating

434
00:45:10,720 --> 00:45:19,440
that aren't offensive to people and move toward strategies that that you know

435
00:45:19,440 --> 00:45:28,160
people aren't so you know so negative about so I hope that improves because I

436
00:45:28,160 --> 00:45:35,080
think that's a hard thing right now for many practitioners and you have people

437
00:45:35,080 --> 00:45:41,640
who just jump into it full force but it's just as someone who often sees

438
00:45:41,640 --> 00:45:48,640
smaller kids and and I do think things like behaving yourself reasonably are

439
00:45:48,640 --> 00:45:54,560
really important to allow them access to things they want to do and somebody has

440
00:45:54,560 --> 00:46:04,000
to help the kids figure that out but so that's something I hope gets better you

441
00:46:04,000 --> 00:46:09,240
know I think that we need to know more for research I feel like we you know

442
00:46:09,240 --> 00:46:15,520
genetics is going to continue on with a ton of money and but I think the reality

443
00:46:15,520 --> 00:46:20,240
is that the the miracles that are going to come for genetics are not going to

444
00:46:20,240 --> 00:46:24,320
affect your average autistic person they're going to affect someone with

445
00:46:24,320 --> 00:46:30,080
some very rare disorder that someone happens to figure out you can give them

446
00:46:30,080 --> 00:46:35,960
a shot when they're born or whatever and that's not going to affect probably

447
00:46:35,960 --> 00:46:43,320
anybody that I see or you see you know I mean that will be great if it's true so

448
00:46:43,320 --> 00:46:47,760
I think we need we need to understand more the relationship between how does

449
00:46:47,760 --> 00:46:53,480
the brain actually work not just in autistic people but anybody and and then

450
00:46:53,480 --> 00:46:59,000
what can we what does that mean for what we do because we're human beings we're

451
00:46:59,000 --> 00:47:04,360
like not little brains walking around we're whole people so I hope that people

452
00:47:04,360 --> 00:47:12,600
move in that direction and then I hope that there's I mean I think early

453
00:47:12,600 --> 00:47:18,080
intervention is really important but I think that we need to recognize that

454
00:47:18,080 --> 00:47:23,360
that early intervention isn't an answer in itself I mean you want to get kids

455
00:47:23,360 --> 00:47:28,840
started and you want to move forward and particularly in language we need to see

456
00:47:28,840 --> 00:47:34,280
changes early on or they're going to be very slow but I think we want to also

457
00:47:34,280 --> 00:47:39,160
recognize what happens for school-age kids and what can we do better and what

458
00:47:39,160 --> 00:47:45,440
happens in teenage years and adults and I hope that there will be better services

459
00:47:45,440 --> 00:47:52,440
and more knowledge about what what we could do to make life easier or better

460
00:47:52,440 --> 00:48:00,440
for people and better services for adults yeah yeah well said that concern is like

461
00:48:00,440 --> 00:48:08,520
the trend of I guess it's now one in 36 children it's like when does that balance

462
00:48:08,520 --> 00:48:14,960
or when does that stop trending that way yeah I don't know it's very concerning

463
00:48:14,960 --> 00:48:22,800
okay so so last question now I'll let you go dr. Lord if you had a magic wand

464
00:48:22,800 --> 00:48:27,440
what would you like to know about autism if you could have one question

465
00:48:27,440 --> 00:48:31,200
answered oh goodness

466
00:48:31,200 --> 00:48:34,200
um

467
00:48:42,200 --> 00:48:48,000
I don't know I don't think there's one yeah I think it's probably different for

468
00:48:48,000 --> 00:48:52,680
different people you know

469
00:48:52,680 --> 00:49:05,240
I guess I would like to know better how do we find the strengths in an

470
00:49:05,240 --> 00:49:14,880
individual child or adult that wouldn't that will most help that person have a

471
00:49:14,880 --> 00:49:20,640
happy life and how do we do that and I don't think there's gonna be one answer

472
00:49:20,640 --> 00:49:28,840
but I I feel like we're grappling with that all the time but I I don't I don't

473
00:49:28,840 --> 00:49:35,880
know you know I mean we just look at what we can do and make guesses those

474
00:49:35,880 --> 00:49:40,600
those strengths are in there too somewhere they are they absolutely are they

475
00:49:40,600 --> 00:49:48,960
are I'm satisfied and pleased that you said that gives them a happy life leads

476
00:49:48,960 --> 00:49:58,120
them to a happy life yeah it's it's I mean people can be people I mean I guess

477
00:49:58,120 --> 00:50:02,560
it's true for anybody can be happy and people can be not happy but how do you

478
00:50:02,560 --> 00:50:08,800
do that how do you support that and and I think I'll think we'll get better at it

479
00:50:08,800 --> 00:50:14,720
but I don't know the answer if you figure it out Ryan let me know how I

480
00:50:14,720 --> 00:50:22,880
would love to I would love to let you know that would be my pleasure well

481
00:50:22,880 --> 00:50:27,880
well dr. Lord I can't thank you enough for your time I know you're very busy

482
00:50:27,880 --> 00:50:33,440
impacting the world and the field of autism and I very much appreciate that

483
00:50:33,440 --> 00:50:42,840
I've I followed your work and I'm I just love reading your material so thank you

484
00:50:42,840 --> 00:50:50,400
and just thank you so much my pleasure it's very nice to meet you Ryan and I

485
00:50:50,400 --> 00:51:00,800
wish you luck with the podcast and your own studies yeah all right bye bye

486
00:51:02,400 --> 00:51:07,520
thank you for listening to the conversation with dr. Catherine Lord if

487
00:51:07,520 --> 00:51:12,640
you are listening to the episode or listening to the podcast please feel

488
00:51:12,640 --> 00:51:18,520
free to leave a review or rating and podcasting reviews ratings and downloads

489
00:51:18,520 --> 00:51:28,000
are huge and I very much appreciate your feedback you can contact me at info.

490
00:51:28,000 --> 00:51:37,480
from the spectrum at gmail.com and thank you for listening to from the spectrum

491
00:51:37,480 --> 00:51:59,200
podcast