Welcome to From the Spectrum Podcast. This is
a podcast about autism. It is my goal to explain
what is autism. I plan to use a mixture of scientific
literature, personal experience, and opinion.
With opinion, I will explain why I feel the way
I do and give examples. I will provide links
to various references for each episode. For each
episode, we will discuss various aspects of autism.
For today's episode, it is my pleasure with overwhelming
excitement to announce the first guest of the
podcast. From UCLA, George Tarjan, distinguished
professor of psychiatry and education. Dr. Katherine
Lord. Dr. Lord is not just any guest. When I
and most others think about autism research,
knowledge, and education, there's a short list
at the top. The top of the top tier. With numerous
contributions, such as the Autism Diagnostic
Interview or the ADI, the Social Communication
Questionnaire, and the Autism Diagnostic Observation
Schedule, or ADOS. Two are considered the gold
standards in autism. Assessment. In addition,
to back my thoughts about Dr. Lord's contributions
to autism, a paper released in 2023 in Frontiers
in Psychiatry shows She has the most impact and
productivity in autism from the years 2011 to
2022. As you listen, please consider some potential
highlights of our conversation. Dr. Lord's journey
into autism and notice despite the highest impact
score in autism research, she still takes some
referrals, and sits in on IEP meetings. The evolution
of the autism assessment process and the evolution
of the ADOS, from her basement and being overran
by demand to the gold standard in autism assessment.
How centralized money, medicine, and education
interacts with autism and the language used.
in policy and politics, and in the DSM. Remember
my previous comments about the DSM. Don't get
hitched on this book. And finally, how the word
spectrum is interpreted in professional and in
the public. An update on profound autism and
the future of autism. And now, my discussion
with Dr. Katherine Lord. Dr. Lord, why don't
you begin with just telling us, when did you
know autism was going to be your focus? I think
as an undergraduate, I worked for LOVAS. doing
very traditional behavioral things. And I worked
with two kids who I just loved. And by the end
of working with him for a couple of years, I
was pretty negative about simple behavioral approaches.
I felt like, boy, this is not the answer. But
I loved the kids. And then I went to graduate
school and deliberately went away from behaviorism.
But in my last year of graduate school, I ended
up just by accident teaching a class of kids.
It was just after IDA. So when special ed schools
were required to let kids into school, kids with
disabilities. taught a class of kids coming to
school for the first time who are between three
and eight years of age. This was in rural Vermont.
And in fact, about half the kids had autism.
All kinds of things. I mean, they ranged from,
you know, a really smart little girl who is blind,
who also had who had autism, who could play the
piano. like you never heard it and who used to
shout at herself, Tammy, stop playing that goddamn
piano, which was very embarrassing, but who,
you know, to a child who couldn't talk and everything
in between. And, and I think then I just was
like, oh my gosh, I really like these kids. I
don't know why. And, and so then I went. When
I had to do an internship, I also was trying
to find a position where there were people very
committed to clinical work, but who also did
research. And it was really hard because I found
great researchers who didn't care at all about
clinical work. And then I also found really good
clinicians, but who were not reading or doing
any research. And then I got the position in
North Carolina at Teach. which at the time was,
I mean, it wasn't brand new, but it was just
folding out. And that was an amazing experience.
So that just did it for me. Yeah. So as you described
those children long ago, it seems like, correct
me if I'm wrong, the profession and society didn't
really recognize it yet as this big continuum
or spectrum like you described it. Is that correct?
That is absolutely true. I mean, you know, I
think Lovasz took on autism because he was very
interested in behaviorism. And he thought that
with these techniques, we can teach anybody anything.
And then he'd heard of these kids who weren't
communicating in an ordinary fashion. So he literally,
I mean, what was amazing was he brought kids
out of a state hospital and they lived here on
campus. And the idea was we were going to cure
these kids, which is ridiculous. But and then
I worked with two kids and one little guy never
did what I was trying to get him to talk. He
never talked. We were both dying of boredom.
So we spent a lot of time in the bathroom. You
know, I got him to. you know, wash his hands
and we learned how to get paper towels and we
were really, I mean, about ready to throw spitballs,
I think. And then the other guy was a kid who
I think had stopped talking when he was sent
to the institution. Once he came here and he
had this army of predominantly young women working
with him, he started talking and he was ahead
of me every step of the way. You know, I would
be like, all right, we're going to work on pronouns.
And he would be saying you would be using pronouns.
So that was very interesting, too. So I just
felt like there's so much we don't understand
here that and. I'm not completely negative about
all behavioral techniques, but I think, you know,
it was so oversimplified that what we were going
to do and what were we trying to accomplish.
Yeah, that's a great mindset. The idea of like
the ABA or this behaviorism is interesting to
me, whereas It's it's another human being instructing
another human being on On what they should be
doing or ought to be doing But who's to say that
the the instructing human being, you know, it
knows what's best for that in this case a child.
Yeah So that's the hard part, you know, and I
think with these two kids we were way off with
both of them because one of them you know he
couldn't imitate sounds so for me to spend for
us to spend 40 hours a week trying to get him
to say bah and the idea that he was going to
say bah in order to get a frito he the poor kid
couldn't do it but he could do other things you
know and then the other kid was ahead of me he
was like i was you know he could have taught
me um the sad thing is he went back to the institution
and stopped talking again and so we were just
doing the I mean we were doing something right
which was giving him all this positive attention
but the actual teaching of language was neither
here nor there and I do have very mixed feelings
I mean I think hopefully this I can say this
well because I do think sometimes we have to
say like sometimes I have to say look I as an
adult I do know more than you as a three -year
-old about what life is like and what you're
going to need to learn. But also, I want to respect
what you are good at and what you're interested
in. And the more I can do that, the more we're
going to learn together. Absolutely. And that's
the trade off. And I think we've had, you know,
real pushback from the autistic community. Like,
let's not, you know, I shouldn't be making any
decisions. But sometimes I feel like I mean,
we have some patients who are periodically physically
aggressive and it just, this is not good. It
just harms them and it's such a shame because
it restricts what they can do. And so I do think
somebody then has to jump in and say, all right,
how do we help them do other things? And so you
do need somebody jumping in. On the other hand,
I'm not trying to say, like, don't look at lines.
If you like lines, you can look at lines all
you want. And if you can draw by, you know, that
is wonderful. So let's build on your strength.
But I'm still I am going to try to keep you or
from pulling your mother's hair or whatever,
you know. Yes, just given a little bit of different
perspectives can go a long way. Yeah. So before
the creation of the ADI, and social communication
questionnaire in the ADOS, what was the condition
of the autism assessment like? Well, I think,
I mean, it's interesting because one of the things
that TEACH did in North Carolina was they were
one of the first groups to have like a standard
assessment. So they had something called the
PEP, the psychoeducational profile. And so there
was a standard assessment, but it wasn't... It
didn't meet the standards for testing that some
of the famous tests like the SAT or the WISC,
it didn't meet those standards. But they were
a group that really tried to help figure out
what do you do when you're face -to -face with
a kid you've never met before and how do you
figure out what they can do. One of the concepts
they had, which we really used, especially in
the ADOS, is this idea of if you don't, if you
present a task to a kid and they don't seem to
be able to do it as you think they should, what
do you do next? Like, how do you see if they
can do it if you change something? You know,
if instead of putting out 20 blocks at once,
you hand them one at a time. you know is it just
that there's too much stuff or is it that the
blocks are wooden and they don't like wood or
you know those kinds of things and so this idea
of like emerging skill and being able to say
all right this is what this is how i needed to
change in order to help the child that I'm working
with be able to accomplish the task? And then
how can I use that information in planning what
we're going to do next? Okay, yeah. So as you
describe such details about the instruments,
from a creator, now we all know that these instruments
get revised and modified throughout. But how
do you know when they need revised or modifications.
Oh, goodness. They always need revisions. I think
the reality is they're always they are not perfect.
So they always, you know, we always know we always
have a list of like 10 or 20 things that we want
to improve. I mean, I think at this point, we
are partly captive to the fact that they're published
by a business. And so And I think that is just
a practicality. For a long time, we literally
made these things in my basement. And then my
husband was like, no plastic bags in the bathroom.
It was just crazy. And we were getting hate mail
from people saying, why can't you get this to
us? We're a little bit in that situation now
because we tried to come up with a shorter version
and we're making kits. So I went to a company
and they make it, but then what happens in terms
of revisions is very dependent on them. So I
think the revisions come both from us knowing
this didn't work that well, but also from changes
in the field. For example, we're seeing many
more adults who haven't had a diagnosis before,
who are quite bright. And that is different than
what we saw, you know, even 25 years ago, when
not, I mean, we definitely saw some autistic
kids who were very smart, but we also, it was
just a different group, you know, who is, who
is referred in preschool is different than who's
referred at school age, and it's different from
who's referred. So those kinds of things say,
wait a minute, we're going to have to figure
out better ways of addressing this. So always
I would say, you know, but then the publisher,
like there's going to be a revised ADAS and we
have been bugging the publisher for years to
do it. And now they're finally ready. So we are
working away at a new version, but it's We do
it, and then it takes the publisher another whole
year to lay out all the forms and figure out
what they're doing. But you should tell people
that are listening, we have lists. If people
have complaints, let us know. We will file them
away. We can't do anything often immediately,
but we are listening and trying to figure out
how to make the thing better. Oh, yeah, I appreciate
that. I read about... how much input you take
on from people in the community and people with
autism. So with the current condition of the
autism assessment, what do you think the overall
assessment needs? What are the biggest gaps?
That's a really good question. I mean, I think
I think how you put information together is we
have not specified that. We really have left
it up to the clinician. So you may have, these
days you may have a parent who gives reports
on the ADI, which is this long interview. Then
you may see the person. and do an ADAS, which
is just scored. The ADAS is scored from the time
you start it to the time you finish it, like
45 minutes. You don't score anything else, you
know, so it's there's because that you want it
to be reliable. But then also you have information
about like what is what are the other things
that are happening in people's lives that, for
example, a parent might know not me might not
know. So how do you put that all together? And
I think we don't tell people how to do that.
We really leave it up to the clinician. And I
think that is both good because you hope the
clinicians are good working with whoever the
person is who's come for the diagnosis, but it
also means people don't know what to do. If you
have somebody who really feels like they have
autism and you see them on the ADAS and they
don't look like they have autism, what do you
do? Or you have a parent who is describing all
kinds of things and you don't see it, what do
you do? And so that's a gap. I think we also,
so far the ADAS has worked, the ADAS at least
has worked quite well across different cultures.
But it really is, which includes sort of gender.
So, but it really is up to the clinician to modify
things, you know, to say, wait a minute, I have
in front of me, you know, a young woman who is,
you know, interested in princesses and not in
cars. So I need to pull out this toy or whatever.
And that's not as well specified as it should
be of how How can you be flexible within it?
So I think that's another issue. And it's, I
mean, we are dealing with the practicalities
of a medical system, particularly in the United
States, you know, that's very focused on procedures,
like what do you do in the office? You know,
that's how billing works. And often you need
other information. And so how do you incorporate
that information? You know, both from the person
seeking the diagnosis, but also from other people
who might know them in other circumstances. Okay,
yeah. Yeah, and something that interests me is,
especially now more and more, is this idea of
early screening, even if it's by like a PCP.
So I have a couple of questions on that. One
is, does this screening, is it as standardized
as, let's say, an assessment or one of these
instruments? How do we know that the PCP is equipped
and can handle this screening? And then, does
the screening help? the overall process of the
assessment. Now we know that it would help the
treatment plan. The earlier you get the treatment,
the better off, the better the outcome. But does
that kind of help the assessment at that younger
age as well? I mean, I think the screenings.
help get people to think about the possibility
of autism. At this point, most of the screening
is either questionnaires for parents filling
out or very brief things that people are experimenting
with. So in terms of like showing a kid an iPad
and seeing if they look at two children playing
together or they look at a tree. But there isn't
yet So there's beginning evidence that those
might provide you useful information, but it's
very, very new. And I think you're right. How
people are going to use that information is not
clear. I think if people use it like one source
of information, you know, it's just like one
thing, then that's fine. I mean, it gives them
an idea of like, wait a minute, I need to stop
and worry about this. So that's good, it gets
people thinking about autism, but if people use
it in place of like actually spending time with
a child and figuring out how does the child go
about doing things and what are they interested
in and how can you get them to do the things
like talking that you want them to do, I think
that would be really harmful. So I think the
screening... If it's just getting people to think
about stuff, it's fine, but if it's treated as
an answer, it's not. We just got a referral of
a child who has been screened numerous times,
never got a diagnosis, has a developmental delay
category, and he's in a preschool program. He's
been there for a year, and I think he's got autism,
and nobody has really... looked at this carefully
and she's like well what are you thinking you
know um so that i feel like it's not an end it's
a beginning no um and i think it's you know if
you think about like going to a doctor and they
do like a blood panel you know mostly they don't
stop that that's a start it's not a it's not
an end you know, unless they say, aha, you have
strep throat, I'm putting you on this. Most of
the time it's just a beginning. And that's where
it's important. Yeah. Yeah. Okay. So this idea
of, as you described that child in preschool
going through those numerous screenings, it's
like this idea of spectrum as we kind of lump
everybody with autism into this white spectrum.
I'm kind of concerned that for a couple of different
reasons, maybe the biggest one is how wide or
how much of a variety there is. Let's say from
like a level one high functioning to a level
three that has completely different looks to
it. And my concern is how do people from the
outside looking in, how do they know? Like, how
do we teach society about this broad spectrum?
Yeah, I mean, I agree. I don't know. I think
part of the problem, I mean, the reason why we
would start with autism and not just say, all
right, it's actually... three different things
or two different things. I think there's two
reasons. One is that at early ages, you can't
tell. We can tell that a two -year -old or three
-year -old has autism. We can't predict, especially
at two, we can't predict, are they going to be
brilliant with autism and getting a PhD in physics,
or are they going to be nonverbal? So we can't
tell and we can begin to tell at gradual at like
three and four and five, but we can't tell with
the tiny kids and we want to get them in services.
I mean, one of the things our Lancet commission
really tried to say is kids should be able to
get services before they even get a full diagnosis.
You know, if you're worried about the kid. get
them in and then say all right sometime this
year we got to do a better assessment so we know
him better so he's not like the little guy just
described but let's not wait but we don't know
so that's one reason why we need sort of autism
spectrum the other reason is there's a ton of
people in the middle between the physicist and
the person who can't talk and What do we do with
them? I mean, we've been working at trying to
have a better definition of profound autism of
like people that are really very handicapped.
And we can do that. But then what what about
everybody else? And there's such there's still
a spectrum from people that are really totally
independent and just have some struggles with
some of the social things or some of the sensory
things that affect people with autism. And then
there's people who are really, you know, very,
their lives are very different because of the
autism, you know, even though they're bright
and they have other, you know, they have many
strings. So where do we put them? And I don't
know. The trouble is they're not those people
are mostly not making podcasts They're you know,
they're there and we see them in the clinic But
they're not in for now. Actually most many of
them are not getting help at all And so what
do we do about them? So, I don't know but I do
I Do I I don't feel like I have the answer at
all, you know, and I I get why A few years ago,
we thought, oh, it'll be genetics. Everyone will
know what their genetic disorder is, and they
won't need autism. But the reality is the genetics,
even when you know what the genetics are, one
third of the people might have autism, and one
third of the people have epilepsy, and one third
of the people. There is no single genetic cause
of autism only. And then most people with autism
don't have these, so I don't know. I'm ready
to listen to you, Ryan, and what we should do
that would be more helpful. And it's so confusing
to families, I think. I feel like, and to the
public, because the public thinks everybody,
people with autism are like the good doctor,
which is just not. True But there are people
who do really well. Yeah, so I Don't know. I
I don't know it's it's easier for society looking
in to recognize Like the good doctor and then
recognize the profound. Yeah autism But there's
so much in between Yeah, and the the genetic
Not one thing and not Even if you have that genetic
dysfunction, I guess, if you will, it doesn't
necessarily mean autism. There's a whole patchwork
of things going on way upstream in our biology
that is just hard to capture. This idea of the
spectrum, though, is like, you know, I get concerned
about how people view it. and not having distinct
edges. I heard Dr. Venstra Vanderwill, I believe,
talk about not having edges so we can better
have more understanding of this group of people
with autism and this group of people with autism.
But there's just so much. Yeah. I'm hoping that
since you mentioned And we touched on profound
autism and the Lancet Commission. I'm hoping
that you can give an update that was released
in 2022, I believe, and just seeing how that
goes or how that's going. Yeah, I don't know.
I think, you know, I mean, one of the things
I want to say about the Lancet Commission is
profound autism was just a tiny part of it, but
it's gotten more attention than anything else.
And the major thing that the Lancet Commission
was trying to say is we need more research on
what actually makes a difference in people's
lives, and that we do need to work with the autistic
community, both people with autism and also parents,
to figure out what makes a difference, because
we know so much more about biology, which is
very interesting, but on the whole has not helped.
It will help I think someday, but it's very long
term. And we need to know more just like how
many hours of something does a kid need and how
do you decide and does telehealth CBT work for
whom and why not or why and those kind of things.
So that was the main point. And then also across
cultures because most of the research has really
come from Europe or the US or to some extent,
some of the wealthier Asian company countries.
But there's a lot of autistic people out there
who don't get anything. So that I'll just put
in my push for it because profound autism just
hit the news more. I think that, you know, there's
now two, you know, there's now the profound autism
alliance and there's I think both the major research
organizations are recognizing profound autism.
There was a lot of conflict over what would go
into, they're trying to pass a new bill for autism
cares in Congress. And there were really very
different groups. who are saying, you know, if
you mentioned profound autism, we won't sign
it. And then other people saying you have to
mention it or we won't sign it. I think they've
agreed on words, you know, you know, and but
I'm not sure even what those words are. But I
think the idea of like high support needs. So
I think that's a big step. And at least recognizing
You know, it's just ironic because most of the
biological research on autism, at least the genetics,
has been on kids who are very handicapped. And
then all the other research is mostly on people
who are not. And so there's just, again, this
middle that doesn't get addressed. And then there's
also the, we need behavioral research on people
that have more severe issues. And we need Well,
I don't know how much we need the genetics of
brighter people. I'm skeptical that's going to
help a whole lot. But anyway, I think people
are getting more used to profound autism and
the idea, but there's various groups. There are
groups that want us to declare who has profound
autism when they're three years old, which I
think is really wrong. Because you don't know
No on the other hand, I think Accepting the fact
that there is this broad spectrum and sometimes
people who can't speak for themselves are left
out and that we do need Families and we need
to recognize that someone needs to advocate for
these people because they're they're not able
to talk to you know write books or or speak,
or they can speak, but they can't really stick
up for themselves and what they need. Yeah, I
just read a paper and I think it just came out
about this university or research center claim
that they could predict profound autism versus
non -profound autism based off of the size of
a brain or something in the cell biology, if
I'm not mistaken. I thought that was kind of
interesting. I don't know. I mean, they might.
I mean, I do think there are certain genetic
disorders that are very much tied to intellectual
disability and often seizures. And so the chances
if you have those of having, if you have autism,
which not everybody does, of also having intellectual
disability are high. But I would hate for people
to be limiting kids when they're very little,
you know, saying they're never going to be able
to do this or that. You know, I think I mean,
what we're interested in, you know, just because
we've been doing research so long is the trajectory.
Like, what is the how are you changing? And if
you can use that plus what who is helping and
who is not. then I think that's much more useful.
It's just that it's, you know, from a medical
point of view, it's more time consuming if you
have to have two or three points instead of just
one. Yeah, I want to highlight a couple of things
after that. One, I don't remember if it was in
Nature reviews, disease primers or that Lancet
Commission. I believe it was the Lancet Commission
that it's mentioned that it's easier to get approval
for like medical specialists than it is these
lower level treatment plan options, which is
a concern. Yep. I remember having a meeting at
one of the finance companies in New York. I forget
which one, but Chase or JP Morgan and the physician
in charge said, yeah, we'll pay you know, any
kind of medical specialist, you know, but we
you know, but we won't pay like a education person,
you know, to work with a child. And they're like,
because we think we have the cream of the crop,
you know, reimbursement, but it's like, at some
point, somebody needs to sit down with the kid
and work with them. So you can have an you know,
20 medical specialists, but nobody's going to
help toilet train that child or You know help
him learn to say, you know cup So I think that's
again, that's part of our crazy system in terms
of And it's just, I mean, they've worked it out.
Like, I mean, just as a person getting older,
I've had many more medical procedures in the
last few years than ever before. And you realize
that there are tech, you know, technicians, you
know, if you go to have some kind of cardiology
exam, you know, somebody prepares you, there's
a nurse, there's all these different levels before
you actually see the physician. But they're preparing
you for whatever the physician is going to do.
Whereas I think in autism, we just need people
who are going to work, work with people. And
that doesn't require a PhD or a PsyD or an MD,
but it does require thought and kindness and
planning and experience. So I don't know. those
people on the front lines, if you will, those
so -called lower level people, they're the ones
that's going to have the most impact, I think,
for the best outcome. I guess one of my concerns
is with that diverse knowledge and information
or whatever about this idea of this wide spectrum,
does that interfere with some of the research
and financial backing and people that make decisions,
does that interfere with their recognition? So
I mean, I don't know. Yeah, I don't either. I
mean, I do think that even like the levels, you
know, I mean, the levels in DSM five are there
because we were told as a committee, we have
to have levels. And the whole committee was worried
about them. So they're really written almost
circularly, because we were really worried that
there would be people that wouldn't get services
because they were the wrong level, or that people,
insurance companies wouldn't continue to do services
if people weren't moving up levels. And so they
don't make any sense. You know, and we knew that,
I mean, but it's how do you I mean, you need
to have ways of measuring if somebody is making
progress starting where they are. But that is
more work. It doesn't fit with our medical system
on the whole. And the idea that you go in and
have blood tests and somebody says, aha, you
have that viral infection, which is just not
autism. It's not a viral infection. I'm reminded
a little bit about so those barriers in the medical
medicine and then also in education that the
knowledge and information about how someone with
autism learns and the current classroom situation
has to my understanding that I've figured is
like four strikes against autism. The social
communication dynamic the sensory processing
dynamic, the speech and language dynamic, and
then this task switching or this subject switching,
which is very much against B3. You know, you
40 to 50 minutes on the subject, then you change
subjects. 40 to 50 minutes. And if you have B3,
you hate that. That is very challenging. Yep.
I mean, I think there's another, you know, hard
choice because on the one hand, I think having,
you know, very segregated classes that never
interacted with anybody except the most autistic
kids is not great. But I also think, I mean,
school can be... torture, you know, I mean, I
still I mean, I do not I don't have autism, but
I just think how did I spend eight hours a day
sitting with 34 other people all day long, doing
what someone else told me to do? And I don't
have the the sensory issues or the social I mean,
I'm not that social, but I think that, you know,
it's it how and what do you come up with as an
alternative? And I think it's relevant also,
not just to autism, but even with kids with ADHD,
for example, different issues. But, you know,
so being in a big class without a lot of flexibility
and then changing classes, as you said, I mean,
I recently was on an IEP meeting for a school
for a kid I've known forever. And he is going
into high school. And I was so impressed because
He is autistic, very smart, but autistic. And
they were gonna put him in a class that was taught
by two teachers, and every single class was taught
by two different teachers. So he was gonna have
seven classes, each with two teachers. And I
think it was like the school psychologist, and
we were just like, oh. This is going to be awful.
No, and the school psychology has just said,
you know what? Why don't we not do this like?
It would be better for him just to have somebody
who's responsible for getting him, you know,
I mean, he really does not need an aide following
him around all the time, but somebody who's responsible
for him all the time and then let him do what
the other kids are doing. And then we're going
to have him have fewer classes, not because he's
not smart enough, because it's just too many
changes. Yeah. And trying to help his family
and him realize maybe it's going to take you
if you want. you know, an honors high school
diploma. It might take you an extra year, but
you do not have to have seven classes. You know,
that is not set in stone for the rest of your
life. Let's just get you through this. And maybe
he can have two art classes because he's a wonderful
artist. And it's not that we're giving up on
everything else. It's just let's pace it. Um,
but it's very hard, you know, the idea of two
teachers in seven classes, 14 teachers, you know,
you're right. And I mean, we've been having him
like leave class early. So he's not in the hallway,
noisy, go to class. I mean, it's just anyway.
It's a concern for me. And from my experience
as well as if you have autism and you're, you're
navigating society over years. of doing this,
all of that expectation and that just plasticity
of how you're shaped and developed is very opposing.
It's many challenges. Yeah, it is. It absolutely
is. And it shouldn't have to be, but it is. Yeah.
And for education, it's hard to change because
they have to teach the general population first.
Right. and then these so -called outliers. Yeah,
it's tough. I'm anxious to see how that evolves.
Which brings me to another question. What does
autism look like in 10 years, in your opinion?
Oh, good question. Good question. Actually, I
don't know. I mean, I hope that there's less
conflict between, you know, the autistic advocacy
community and other people. So I feel like the,
you know, autism advocates have really important
things to say, but sometimes it gets overwhelmingly
negative, at least for me as a practitioner.
And I hope that gets resolved. I hope we can
work out. ways of communicating that aren't offensive
to people and move toward strategies that people
aren't so negative about. So I hope that improves
because I think that's a hard thing right now
for many practitioners. And you have people who
just jump into it full force. But it's just as
someone who often sees smaller kids. And I do
think things like behaving yourself reasonably
are really important to allow them access to
things they want to do. And somebody has to help
the kids figure that out. So that's something
I hope gets better. I think that we need to know
more for research. I feel like genetics is going
to continue on with a ton of money. But I think
the reality is that the miracles that are going
to come for genetics are not going to affect
your average autistic person. They're going to
affect someone with some very rare disorder that
someone happens to figure out. You can give them
a shot when they're born or whatever, and that's
not going to affect. Probably anybody that I
see or you see I mean that will be great if it's
true So I think we need we need to understand
more the relationship between how does the brain
actually work? Not just in autistic people, but
anybody and and then what can we? What does that
mean for what we do because we're human beings.
We're like not little brains walking around.
We're whole people So I hope that people move
in that direction. And then I hope that there's,
I mean, I think early intervention is really
important, but I think that we need to recognize
that early intervention isn't an answer in itself.
I mean, you want to get kids started and you
want to move forward and particularly in language.
We need to see changes early on or they're going
to be very slow. But I think we want to also
recognize what happens for school age kids and
what can we do better and what happens in teenage
years and adults. And I hope that there will
be better services and more knowledge about what
we could do to make life easier or better for
people and better services for adults. Yeah.
Yeah. Well said. That concern is like the the
trend of I guess it's now one in thirty -six
children. It's like. Yeah. When does that balance
or when does that stop trending that way? Yeah.
I don't know. It's very concerning. Okay. So,
so last question and I'll I'll let you go Doctor
Lord. If you had a magic wand, what would you
like to know about autism? If you could have
one question answered. Oh, goodness. I don't
know. I don't think there's one. I think it's
probably different for different people. I guess
I would like to know better, how do we find the
strengths in an individual child or adult that
will most help that person have a happy life?
And how do we do that? And I don't think there's
going to be one answer, but I feel like we're
grappling with that all the time. But I don't
know. I mean, we just look at what we can do
and make guesses. Those strengths are in there,
too, somewhere. They are. They absolutely are.
They are. I'm satisfied and pleased that you
said that gives them a happy life, leads them
to a happy life. Yeah. I mean, people can be...
I mean, I guess it's true for anybody. You can
be happy and people can be not happy. But how
do you do that? How do you support that? And
I think we'll get better at it, but I don't know
the answer. If you figure it out, Ryan, let me
know. I would love to. I would love to let you
know. That would be my pleasure. Well, Dr. Lord,
I can't thank you enough for your time. I know
you're very busy impacting the world and the
field of autism. And I very much appreciate that.
I've followed your work and I just love reading
your material. So thank you. Thank you so much.
Well, my pleasure. It's very nice to meet you,
Ryan, and I wish you luck with the podcast and
your own studies. Thank you. Yeah. All right.
Bye. Bye. Thank you for listening to the conversation
with Dr. Catherine Lord. If you are listening
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