Podcast 49 | transcript
Hello, I’m Katherine O’Brien, the host
0:02
of the Autism Goes to College podcast.
0:04
And on this episode, we’re doing
0:06
something just a little bit different. I
0:08
spend my days on the campus of
0:10
University of California, Riverside,
0:12
where I’m an autistic PhD student
0:14
researching the spectrum. I teach uh
0:17
students who are going to be educators
0:20
um and some of whom are autistic
0:22
themselves. And there’s been a lot of
0:24
questions and confusion on campus this
0:27
summer. um and fall in ways that I did
0:31
not imagine myself encountering when I
0:34
started graduate school a couple years
0:35
ago. So to discuss some of that, I’ve
0:38
invited on my adviser, Dr. Katherine
0:40
Meltzoff who is an associate professor
0:43
of education and the director of the
0:46
search family autism research center the
0:49
clinic at which I work at UC Riverside
0:52
to have a conversation about what we’re
0:54
doing and what we can do to meet the
0:56
moment and try to push forward the work
0:59
of helping students with autism and
1:01
families um even though things have
1:04
gotten a little confusing. So,
1:07
Katherine, Dr. Moltz off. Thank you so
1:09
much for joining me.
1:11
Yeah, thank you so much for inviting me.
1:13
So, let’s start really broadly. We’re
1:16
both on campus and and working in
1:18
classrooms or in the clinic as well, and
1:21
we’re hearing how the information or
1:23
maybe disinformation that’s being put
1:25
forward by the Department of Health and
1:28
Human Services, the Secretary, Robert F.
1:30
Kennedy Jr., is impacting the questions
1:33
and concerns that are being brought to
1:36
us uh both about the potential causes of
1:39
autism and the potential ways that
1:41
autism could be supported or treated for
1:44
a child. So, what does this mean for
1:47
families and for us as people who are
1:50
working in this space?
1:51
Yeah, that’s a really good question. Um,
1:54
I feel like there’s just so much
1:55
confusion right now. Yeah,
1:58
everyone seems to be talking about
2:00
autism in a way I haven’t ever really
2:03
heard before.
2:05
There’s a lot of distrust, mistrust
2:07
about kind of what doctors have to say
2:10
or what professionals have to say. And
2:12
there’s a lot of a lot of feelings being
2:15
shared about why wasn’t this told to us
2:17
earlier? Why didn’t we know these
2:18
things? It’s been kept secret from us.
2:20
like just a lot of a lot of bad feelings
2:23
about how things have been done in the
2:25
past and a lot of thoughts about how
2:28
they should be done differently in the
2:29
future and it’s been really hard to sort
2:31
of cut through some of that noise I
2:34
think and give people the right
2:35
information
2:36
and I think to me I always assume some
2:39
of this fear and worry is coming from
2:42
the increase in autism diagnosis and and
2:47
the prevalence rise and I kind of want
2:49
to personalize that question a little
2:51
bit. Um, just talking about the changing
2:53
diagnostic criteria right now, like I
2:56
qualify for a diagnosis of autism
2:58
spectrum disorder and it’s accurate to
3:00
say I’m autistic. But 20 years ago, the
3:03
diagnostic criteria were such that I
3:06
would have had a label of Asperger
3:08
syndrome, a label that was um taken out
3:10
of use um when we made the jump to the
3:14
most recent version of the diagnostic
3:16
manual. And then 40 years ago, the
3:19
diagnostic criteria were really, really
3:21
narrow and I probably wouldn’t have had
3:23
a diagnosis at all. Of course, I also
3:25
wouldn’t have existed. I’m not 40 yet,
3:27
but you know, had had I had a time
3:30
machine, you know, and so let’s talk
3:33
about about that and how that can create
3:36
kind of confusion for the average person
3:39
and for families. Yeah, I’m really glad
3:42
you brought that up honestly because I
3:44
think that is one of the biggest drivers
3:47
of this fear and this concern that
3:49
parents have like I have to do
3:51
something. I have to do something. This
3:53
is an epidemic. It’s it’s rising and
3:55
rising and I think there isn’t enough
3:58
attention paid to the fact that the
4:00
first of all autism spectrum disorder or
4:03
autism did not exist as a diagnostic
4:06
thing until 1980. That is not a very
4:08
long time ago. So before that it was
4:12
considered a subpiece of childhood
4:14
schizophrenia which we now know it is
4:16
not at all. So and the criteria in 1980
4:21
were incredibly strict like you had to
4:24
have what they called gross deficits
4:26
quote unquote in all these areas in
4:29
language in you had to have bizarre
4:32
quote unquote responses to people. Um it
4:35
had to be before 30 months of age. So, a
4:38
lot of people, and I think KO KOB, you
4:41
rightfully identified yourself as one, a
4:44
lot of people who today we think of as
4:46
having autism spectrum disorder, being
4:48
autistic, would not have gotten that
4:51
diagnosis in 1980 because the criteria
4:53
were so strict.
4:55
It was capturing like a a really tiny
4:58
subset of what today we would consider
5:00
kind of the most severe cases of autism,
5:03
the kids that are the most affected, the
5:05
most impacted, have the highest support
5:07
needs. It was capturing those children
5:10
but missing the entire the entire rest
5:13
of the spectrum. you know, in my class
5:16
this summer, um, when I last taught, we
5:21
hadn’t, um, had some of the more recent
5:24
news, but there was talk that the cause
5:26
of autism was going to be published
5:28
soon. Um, and I talked to my students
5:30
about why I didn’t think there was
5:32
likely to be a single cause. And also, I
5:35
hypothesized at the time that I thought
5:37
they might um, reexplore the dismissed
5:41
link between vaccines and autism. So, I
5:44
got a lot of questions from students
5:46
about vaccines over the summer, both
5:48
about how vaccines are made and how they
5:51
work and how we know they’re safe and
5:53
effective and why we know they’re not
5:55
linked to cause autism. But I’m
5:57
wondering if you’re seeing that too and
5:59
what kinds of questions you’re getting
6:01
about autism in your teaching practice
6:04
now. Um, if it’s changed. Yeah, I feel
6:08
like there was 10 years or so and maybe
6:12
I’ve I’ve been at UCR 10 years. So, I’m
6:14
going to just say the whole time I’ve
6:16
been at UCR, basically I haven’t had
6:18
anybody asked me about vaccines and
6:20
autism because it’s been studied so many
6:23
times since the first fraudulent study
6:26
in 1998 that linked them in the first
6:29
place
6:30
that was retracted. It wasn’t accurate.
6:33
And then it’s been studied since then
6:35
over and over and there is no causal
6:38
link whatsoever.
6:40
And unfortunately
6:41
now we’re kind of going back to
6:44
wondering if there is a link because
6:46
when people talk about autism recently
6:49
they also are talking about vaccines
6:52
and that is unfortunate because there
6:54
just isn’t a causal relationship there.
6:58
Yeah. The most recent studies that are
7:01
well statistically controlled actually
7:03
find that there is a slight inverse
7:06
association where children that are
7:08
fully vaccinated are a tiny bit less
7:10
likely to be identified as autistic
7:13
which goes to show that statistics can
7:16
easily be misinterpreted but also that
7:19
this really is a settled issue and that
7:22
it had had kind of gone quiet for a
7:25
while. So, are there other things that
7:28
have have sort of spun back up or are
7:30
there new questions?
7:33
I feel like for a while, like I said,
7:35
there was no talk of vaccines, but when
7:37
there was talk of vaccines, maybe in
7:40
like 2005, 2006,7 when the retracted
7:44
study was still more recent,
7:46
it was only talking about the measles ms
7:48
rebella vaccine or the MMR.
7:51
Now, somehow we’re talking about all the
7:54
vaccines. Like I’ve heard a lot of talk
7:56
that I’ve never heard before questioning
7:59
every vaccine. Um the chickenpox
8:02
vaccine, the HEP B vaccine that’s
8:04
recommended early in childirth like the
8:07
day after birth.
8:08
And it’s seeming like it’s coming.
8:10
Vitamin K.
8:11
Yes. Yes. It seems like it’s coming in
8:14
this strange circle where now we’re
8:16
re litigating, so to speak, issues that
8:19
have been settled, which again is
8:21
concerning.
8:22
Yeah. Um, I I certainly was concerned
8:25
when my students were not really sure
8:28
what the mechanism of vaccines were or
8:31
how they were discovered, although I was
8:33
definitely happy to teach them about
8:34
that. What are you finding that the
8:37
students in your classes understand? Are
8:39
they debating? Are they on all different
8:42
p points of view or are they pretty
8:44
accepting of of what you’re teaching?
8:47
It seems like they’re pretty accepting.
8:49
I think the bigger resistance or the
8:52
bigger skepticism, I guess is a better
8:54
way to say it, comes from families who
8:59
are truly truly convinced that their
9:02
child was developing in a in a
9:04
neurotypical way and then they got their
9:06
12 or 18month vaccines and everything
9:08
changed.
9:10
Yeah. and and that is something that
9:13
they feel is true. And it is essentially
9:18
impossible to convince them otherwise.
9:21
And the more people who feel that way,
9:24
which is a valid feeling to have, but
9:27
the more people feel that way and the
9:29
more it gets discussed, the more it
9:31
seems like something that’s a likely
9:32
cause as opposed to again something
9:35
correlated in time like the emergence of
9:38
first autism symptoms with vaccine age
9:41
as opposed to a causitive relationship
9:43
which again there just is not.
9:46
Yeah. And that is similar to the
9:48
question of acetaminophen where you know
9:51
the child is experiencing a huge burst
9:54
of development that makes them able to
9:57
receive vaccines and also able to
10:00
exhibit symptoms of autism and
10:02
unfortunately those are happening at the
10:04
same time. Um, yeah, I know I made a
10:08
couple changes to my syllabus just in
10:10
terms of covering uh vaccines more
10:13
heavily and assigning uh an article that
10:16
was newly published uh continuing to um
10:20
explore the completely discredited link.
10:23
Um, but have you made any changes to
10:25
your syllabus or to your courses in
10:28
response to what’s going on? I think I
10:30
will be when the next time I teach my
10:32
undergraduate class, I think I’m going
10:34
to be assigning that the that giant
10:38
study I think out of Denmark where it’s
10:40
like two and a half million people.
10:42
Um
10:43
that’s the one I assigned.
10:44
I mean it’s the biggest
10:45
it’s every child born in the country for
10:48
about 20 years. Um and because they have
10:51
a national health service, they have
10:52
incredibly complete data.
10:55
Um so it’s really compelling.
10:56
Yeah. and the data they present is quite
10:58
complete. Um, it’s really carefully
11:00
done. It’s statistically accurate and it
11:04
makes it pretty clear that there just
11:06
isn’t a link. And so I do think I’m I’m
11:10
going to be probably assigning that. Um,
11:13
I also might talk about the review about
11:17
acettophen and autism that was discussed
11:20
by HHS a bunch recently
11:23
and that review was kind of touted as
11:25
like proof that there was a link but
11:29
that’s not what that review actually
11:32
said and that’s not actually what the
11:34
review found. So that’s concerning and I
11:37
think
11:38
it leads me to think that there needs to
11:40
be a lot of discussions about how to
11:43
interpret those scientific papers and
11:45
how to interpret review papers and what
11:48
review papers are and what they can and
11:50
can’t do and can and can’t tell us.
11:53
Yeah.
11:54
So I’m rethinking a lot of a lot of
11:56
those things. are is it changing any of
12:01
the research side of things um in terms
12:04
of grants we’re working on or I haven’t
12:08
even thought about this yet really uh
12:10
for my own research but I’m wondering if
12:12
it if it puts some new directions on on
12:15
our work as
12:18
researchers in terms of you know
12:20
supporting media literacy for families
12:24
or things of that nature.
12:27
Yeah, I mean I definitely think it could
12:29
it could change direction in terms of
12:32
kind of public health outreach grants
12:34
like grants that are designed to provide
12:36
education to families um to individuals
12:40
who are supporting autistic people to
12:43
families who have questions and concerns
12:45
to self- advocates any of those grants
12:47
that are designed to be outreach and
12:50
educational I think including
12:53
like you said media literacy
12:56
kind of scientific paper literacy to the
12:59
extent that you can read the abstract of
13:01
a paper and kind of understand what it
13:03
does and doesn’t say.
13:05
Yeah. And that would help
13:07
even educating people that many
13:09
scientific p papers now publish a lay
13:12
abstract which I think a decade or two
13:14
ago was was not the norm. But
13:17
no,
13:17
the changes that we’ve made as
13:19
scientific communicators to try to make
13:20
our work more accessible are not very
13:23
meaningful if people don’t know that
13:25
those resources exist. Yeah.
13:27
Um so yeah, definitely have spent a lot
13:31
of time in grad school working on plain
13:34
language summaries of my work because I
13:36
feel strongly that it should be
13:38
accessible to the autistic community so
13:41
that it is most useful.
13:43
Yeah. Um,
13:45
I mean, I think as scientists, if we
13:46
don’t do a good job of disseminating our
13:48
work and of telling people what we’re
13:51
doing, what we found, what it means, why
13:53
it’s important, what the limitations are
13:56
of the research that we do. I think that
13:59
is something that ethically should be
14:01
happening with every study. I think a
14:05
lot of a lot of us as scientists like
14:06
don’t want to admit that our findings
14:08
could be wrong, but we should [gasps]
14:12
like just because one paper found one
14:14
thing one time does not make it a pillar
14:17
of scientific truth.
14:19
Papers can be wrong even if they were
14:21
done ethically and correctly.
14:23
Findings can be wrong.
14:25
Yes. Or a Yes. A result can be explained
14:29
by something that was not accounted for
14:31
in the study. Yep. Um, you know, I
14:35
remember very early on in my scientific
14:37
career realizing that we had bred a
14:40
mouse line as a as a model of a
14:42
neurological condition, but we
14:43
accidentally bred in a mutation that had
14:46
completely confounded the result of our
14:48
study and it was useless. Um, and that
14:51
happens. Yeah.
14:52
Uh, and sometimes you don’t catch it.
14:54
Yeah. Um,
14:56
and I think when also when papers try to
14:59
do those things and make those controls
15:01
and take those steps, that’s something
15:03
that should be emphasized a lot more to
15:06
lay people.
15:06
Yeah.
15:07
Like for example, in in the one of the
15:09
big studies of acetamin and autism
15:11
actually they found an association so a
15:14
correlation between acetamin use and
15:16
autism. But then when they actually
15:19
controlled for family factors and
15:22
genetic factors, meaning
15:24
is there a sibling in this family with
15:26
autism
15:27
and they looked at sibling pairs where
15:30
the mom took acettophen in one pregnancy
15:32
and not the other, like they did these
15:34
things to control for family factors.
15:36
Once they did that, the association was
15:38
gone.
15:40
And I feel like that doesn’t get enough
15:41
attention. Like people look at the big
15:43
headline and don’t look at the analyses
15:46
that come later that tend to be more
15:48
careful and more deliberate.
15:52
Yeah, absolutely. And frankly, a lot of
15:55
those statistical methods are very
15:57
advanced. So, um people who even with an
16:00
undergraduate level of education, it’s
16:05
hard to understand those analyses. And
16:07
and that’s part of why as scientists
16:10
it’s really important, like you said,
16:11
that we communicate. Um, you know, the
16:15
publicity on autism can feel like a
16:17
double-edged sword because it’s taking a
16:20
lot of energy to address fears and
16:22
concerns that
16:25
we didn’t used to have to address and
16:27
that maybe are not as linked to what we
16:30
we know as academics. like, you know,
16:33
it’s definitely affected
16:35
my mental health to some degree. I’ve
16:38
taken advantage of our onampus
16:40
short-term counseling service just to
16:42
kind of vent about how it makes me feel
16:44
sometimes. And, you know, if you’re a
16:47
student on campus, you probably have a
16:49
similar resource. So, if it’s making you
16:51
feel upset to hear these things, I
16:52
encourage you to do the same. But I do
16:56
think and we’ve talked about the fact
16:58
that there is kind of a silver lining
17:00
here that autistic individuals and their
17:04
families who are dealing with what is
17:06
sometimes termed profound autism,
17:08
although whether that is the right term
17:10
I think is still a subject of debate in
17:12
the field, who really have 247 support
17:16
and care needs and really have a lot of
17:19
gravity to their challenges related to
17:21
autism are feeling sort of heard and
17:24
witnessed in in this moment in a way
17:27
that they haven’t felt seen before. So
17:29
what do you hope might come out of that?
17:32
Yeah, I think that is a ma been a
17:35
massive silver lining. I will say I feel
17:38
like especially with the increased
17:40
awareness of neurodeiversity in the last
17:43
let’s say decade or so.
17:45
Yeah. I feel like some parents have felt
17:48
like the more like paradoxically the
17:51
more acceptance there is for autism as a
17:53
difference not a disease not a
17:55
disability I think some of those parents
17:57
feel like the children that they have
17:59
with these very profound support needs
18:01
and 247 care needs they feel like their
18:05
children are sort of invisible
18:07
because for them in their lived
18:09
experience
18:10
the challenges that their child has are
18:14
disabling
18:15
in their mind because it there’s safety
18:18
issues, there’s,
18:20
you know, severe aggression, there’s l
18:22
complete lack of sleep.
18:23
Um,
18:24
yeah,
18:25
it’s really serious. And so I think the
18:28
fact that those parents feel heard and
18:31
the fact that there’s more attention
18:32
paid right now anyway to the community
18:34
of what we’re calling profound autism is
18:38
really important because in some ways
18:41
the DSM5 when we erased Asperers and
18:45
what was called pervasive developmental
18:47
disorder not otherwise specified or PDD
18:50
NOS
18:51
by lumping everyone together in one
18:54
spectrum there was a sense that
18:58
that sometimes the people who needed the
19:00
most support were just getting
19:03
forgotten.
19:05
Yeah. Um because while the intention was
19:11
to limit confusion between different
19:15
doctors diagnosing people with different
19:17
things,
19:19
you know, every single day I have a lot
19:22
less disability related support needs
19:24
than somebody who
19:27
is not able to speak, is not necessarily
19:30
able to keep their body safe, is not
19:32
necessarily able to feed or or have
19:35
basic hygiene for themselves and that is
19:37
the reality for some autistic people.
19:40
Um, and I think
19:43
we need to talk about that. That said,
19:46
it’s relatively rare for people with
19:50
those needs to attend college. So,
19:52
bringing it back to the topic of this
19:54
podcast,
19:55
exactly. How do you see all of the um
19:59
all of the current publicity and public
20:01
disinformation
20:02
impacting
20:04
a misunderstood population which is
20:06
autistic students on college campuses?
20:10
Um what what do you think might happen
20:12
next?
20:13
Yeah. So I think this is the other side
20:15
of the double-edged sword, right? So the
20:17
families who feel seen finally that’s a
20:20
silver lining. But the what you’re
20:22
talking about is the I think negative
20:26
effect that’s happening for autistic
20:28
college students, autistic people in the
20:30
workforce, autistic people who have
20:33
families and have jobs and you know live
20:37
their lives,
20:37
might be planning to have a baby.
20:39
Frankly, I worry about somebody who’s
20:42
thinking about planning a pregnancy in
20:44
this moment and is autistic
20:46
and who feel who feel as though their
20:48
lives are fulfilling and meaningful and
20:51
don’t want a cure, quote unquote, and
20:54
don’t want to feel marginalized and
20:56
don’t want, you know, people talking
20:57
about them as though they have some
21:00
horrible condition because they don’t. I
21:02
think that’s that’s the other thing we
21:05
have to talk about, which is that for
21:07
those people, it’s invalidating, it’s
21:09
harmful, it’s insulting, it’s demeaning.
21:13
I could go on. It’s really bad.
21:15
Those are those are all emotions and
21:18
frustrations that I have worked through.
21:21
um you know wondering if if this is the
21:26
dawn of uh new American eugenics against
21:29
neurode divergent individuals things of
21:31
that nature it’s all heavy emotional
21:34
weight um and I think all of us know
21:38
that college students perform best when
21:40
they feel supported and accepted um and
21:44
this works against that for autistic
21:46
college students which is
21:49
a real shame in my
21:51
Yeah, I think it works against it. It
21:53
also works against what the
21:55
neurodeiversity movement has worked so
21:57
hard for over the last decade, which is
21:59
to feel acceptance and support
22:03
and validation and valued, which
22:06
everyone should be. And so that’s the
22:10
problem with assuming that autism is
22:13
something that has to be treated or is
22:15
so, you know, terribly profound. I’ve
22:18
heard language like it tears families
22:20
apart and that’s really harmful as a
22:23
statement.
22:24
Yeah.
22:24
Because the spectrum is not one thing.
22:26
We have to
22:28
be aware of what it is.
22:30
Yeah. I think it can just as easily
22:32
bring families together to support and
22:35
understand each other. You know,
22:37
certainly the better I understand
22:40
myself, the more closeness I experience
22:42
and my my family listens to the podcast.
22:45
[laughter] Um, so yeah, I just I hope
22:49
that um this is an opportunity for
22:51
people to connect and and be empowered
22:55
and
22:56
kind of seek out the facts even if
22:59
they’re a little harder to come by.
23:01
Yeah, that would be my hope. And to I
23:04
think also just to recognize how wide
23:07
and diverse the spectrum is. Maybe it’s
23:09
just a reminder for all of us that
23:11
perhaps putting everyone into one label,
23:14
although meant well and done for good
23:17
reason, might still not be the right
23:19
move. Like it might not it might not be
23:21
the right thing
23:22
and that autism is not one thing.
23:25
I I totally agree and I think that there
23:28
is interesting research that’s starting
23:30
to work on that and you know although I
23:33
am not directly involved in the American
23:36
Psychological Association dividing like
23:39
deciding on the guidelines I I kind of
23:41
expect that they will resegment
23:45
autism to some degree. Um, and
23:48
yeah,
23:48
yeah, I wonder if this move will kind of
23:52
fuel that and give some more energy to
23:54
trying to get it more correct this time.
23:58
Yeah, I definitely think there’s a huge
24:00
push at least for segmenting what we
24:02
were calling kind of profound autism
24:04
into its own label because again of the
24:07
amount of support needs, the amount of
24:09
247 care that is necessary for that
24:12
subset of the population, small as it
24:14
may be,
24:15
it is very there are a lot of needs. And
24:18
so I think this might push the APA to
24:22
change that labeling again.
24:24
Yeah, that’s certainly one thing that
24:26
I’m hoping may come of it, although it’s
24:29
too soon to know for sure what the
24:31
impacts and outcomes will be.
24:33
Yeah.
24:36
Yeah. So, tough stuff, but a lot of
24:39
interesting potential as well. Thank
24:41
you, Dr. Meltzoff, for kind of cutting
24:44
through some of the noise with me today.
24:46
Thank you. It’s I think these
24:47
conversations are just incredibly
24:49
important because people don’t know what
24:51
to think and they’re hearing different
24:53
information from different sources and
24:55
it gets to a point where you get
24:56
information fatigue and just feel like
24:58
you don’t want to hear anything anymore.
25:00
So I think these are just necessary
25:03
conversations to have and to publicize.
25:06
Absolutely. I couldn’t agree more.