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NE’EMAN: Good morning.
ALL: Good morning.
NE’EMAN: I want to thank you all for joining us here today. I promised we'd make a good
faith effort to start on time, and I think we're managing that. So thank you all for
joining. Let me take a moment in particular to thank the folks tuning in via the internet,
through our live web cast. We've got a great group of presenters here today, and we've
also got a really promising audience as well. Today is the Autistic Self Advocacy Network
Symposium on Ethical, Legal, and Social Issues in Autism Research.
NE’EMAN: Before we begin, I want to take a moment to recognize our friends and co-sponsors,
the Harvard Law Project on Disability and the Petrie-Flom Center for Biotechnology,
Bioethics, and Health Law Policy. In addition, I want to particularly thank the Administration
on Developmental Disabilities for funding this symposium, and some of the follow up
that's going to be occurring afterwards. Also welcome ADD Commissioner Sharon Lewis, who's
joining us here today.
NE’EMAN: Just to take a moment before we move into our presentations, I think this
is actually an exceptionally timely discussion in a lot of different respects. You know,
this morning the New York Times carried an article on the North Carolina state legislature
deliberating as to how to compensate the victims of North Carolina's eugenics program. And
many of you are aware of the course of the twentieth century, across the United States,
over 60,000 Americans were involuntArily sterilized as a result of the eugenics movement.
NE’EMAN: And I think what that tells us in a broader sense is that science, while
exceedingly important, needs to be accompanied with a strong values framework -- an exceptionally
useful methodology to tell us what is, how the world works, what the facts are, what
is the basic structure of the world that we live in and particular aspects of that world,
and particular aspects of ourselves, our biologies, our neurology, any number of other things.
NE’EMAN: But science has one fundamental flaw, and I think we often don't consider
this. Not so much a flaw but an area in which it cannot answer a crucial question, and that
is how the world should be. To answer that, we need to have conversations about ethics
and about values and about the topics we're going to be discussing here today. One of
the things that I think is particularly important, and I want to call attention to as we embark
on this conversation, is that this is really a very different kind of dialogue than most
which occur in the sphere of autism research conversations.
NE’EMAN: We really made a deliberate effort, and I think we're largely successful, to have
our participants and presenters split almost exactly evenly between Autistic adults and
more traditional researchers and policy makers who have an interest in autism. And I think
that dynamic--the dynamic of really having folks talk across constituencies--is a very
interesting one.
NE’EMAN: It reinforces really both what we're trying to accomplish, sparking a dialogue
that is not simply limited to the ivory tower, but has an impact there, but also really the
values that we bring with us to the table. It reinforces this point, which I think is
critical to all of our deliberations, that we're not simply trying to answer questions
with regards to how our expertise interacts with the natural world and how we utilize
our different types of expertise in collaboration with each other, but we're also trying to
answer the question of what we're trying to accomplish. And that's something that frequently
in autism research discussions we don't include and we don't incorporate.
NE’EMAN: We have tremendous areas of emphasis on questions of efficacy, but the question
always has to be asked, and too frequently is not--efficacy towards what end? What are
we trying to accomplish with our interventions? What are we trying to accomplish with our
research? What are we setting out to do?
NE’EMAN: With that, I want to thank you all for joining us and take a moment to let
folks around the table introduce themselves before we go to our first speaker. Let's start
counter clockwise. Paul, want to kick us off?
SHATTUCK: Good morning. I'm Paul Shattuck. I'm a professor of social work and public
health at Washington University in Saint Louis.
NE’EMAN: You might want to speak into the microphone in case.
DONNELLAN: It's me?
NE’EMAN: Yes.
DONNELLAN: Professor Anne Donnellan, the University of San Diego, and I have been in the field
of autism essentially my entire life. I think that this is year forty-one, and since I was
a preschooler when I started, you can figure the rest of it out.
SWENSON: My name is Sue Swenson. I'm a mother of an adult man who has disabilities, and
I am the Deputy Assistant Secretary in the U.S. Department of Education in the Office
of Special Education and Rehabilitative Services.
LEWIS: Good morning. I'm Sharon Lewis. I'm the Commissioner of the Administration on
Developmental Disabilities at the U.S. Department of Health and Human Services.
GUTTMACHER: Hello, I'm Alan Guttmacher. I'm the Director of the Eunice Kennedy Shriver
National Institute of Child Health and Human Development at the National Institutes of
Health.
MUSGROVE: Hi, I'm Marcela Musgrove, Oregon Health and Science University.
JORGENSEN: Good morning. I'm Cheryl Jorgensen. I'm affiliated with the National Center for
Inclusive Education at the Institute on Disability at the University of New Hampshire.
CARTER: Good morning. I'm Joanne Carter. I'm currently a post-doctoral fellow in universal
design for learning at CAST, the Center for Applied Special Technology. And I was previously
working as an attorney at the Center for Law and Education.
DOMINGS: Hi, I'm Yvonne Domings. I am an instructional designer and research associate at CAST, and
I just completed some autism research.
ROBERTSON: Hi, I'm Scott Michael Robertson. I'm an Autistic adult, Vice Chair of Development
and the co-founder of the Autistic Self Advocacy Network, which is hosting this symposium here
at Harvard. I'm also a council member on the Pennsylvania Developmental Disabilities Council,
and a PhD candidate at Penn State University studying cyberbullying and face-to-face bullying
for my dissertation research.
KAPP: Hi, I'm Steven Kapp, and I research autism as a PhD student in educational psychology
at UCLA. And I'm an Autistic self-advocate and chapter co-director of the Autistic Self
Advocacy Network.
PELLICANO: Hello, I'm Dr. Liz Pellicano. I'm from the Center for Research in Autism and
Education at the Institute of Education, University of London.
BASCOM: Hi, I'm Julia Bascom. I'm an Autistic adult self-advocate and writer.
GROSS: Hi, I'm Zoe Gross. I'm an Autistic adult student at Vassar College and an ASAN
intern.
NEUMEIER: Hello, I'm Shain Neumeier. I'm an Autistic adult. I'm also a law student at
Suffolk University looking into becoming a disability rights advocate.
NE’EMAN: Emily?
TITON: I'm Emily Titon. I'm from ASAN Rhode Island. I [unintelligible] the Rhode Island
chapter, Rhode Island state-wide self-advocate organization, so I am an adult with a disability
and [unintelligible].
CRANE: Hi, I'm Samantha Crane. I am an adult with multiple disabilities including autism.
And I am an attorney focusing on disability law and community integration.
NE’EMAN: And I'm Ari Ne'eman. I run the Autistic Self Advocacy Network, and I also
serve on the National Council on Disability and the Inter-agency Autism Coordinating Committee.
With that and filled with a profound sense of hope and excitement, both at our excellent
and very substantive series of presentations and the fact that we're already running five
minutes early, I'd like to invite our first presenter, Dr. Liz Pellicano, to the podium.
And let me just say, everybody has ten minutes for their presentations so we can preserve
time for group discussion. We will sort of motion to you at five and two minutes.
PELLICANO: Is it on? It's not on. It's on.
NE’EMAN: Yes.
PELLICANO: Yes. Thank you very much for inviting me here to this symposium. I'm so honored
to be here. It's going to be fantastic. Just to give you a bit of background about me,
I'm a developmental cognitive scientist, and I'm interested in the way that Autistic young--children,
young people, and adults view and interpret the world around them, and how that might
be different in non-Autistic individuals. I'm going to talk today about community participation
in autism research with, from the perspective of an autism scientist.
PELLICANO: So I'm going to start off by giving you a brief background of the new sciences
of autism, their social and ethical implications, and then I'm going to move on to some of the
challenges of building a participatory framework for autism research. So to begin, the new
sciences of autism, or what I've called the new translational research, so in the past
few decades, have been substantial developments in autism research. In terms of genetics,
we know that autism is not caused by simple genetic mechanisms, but is a result of multiple
interacting genes and multiple gene environment interactions, much of which we don't know
about yet.
PELLICANO: The so-called neuro-biology of autism suggest that autism is a quote unquote
“large-scale neural systems disorder with alterations in cortical systems connectivity.”
So there's this overwhelming consensus from autism scientists that autism is a quote unquote
“highly heritable disorder of neural development.” So these scientific advances have really prompted
the search for not only genes and genetic mutations but also bio-markers or biological
signatures for autism.
PELLICANO: And these new translational sciences of autism have putative benefits. They might
lead to better understanding of the causes of autism or the causal pathways of autism,
and could lead to better detection of autism and more personalized treatment approaches
based, for example, on an individual's genetic makeup; however, they also pose some serious
social and ethical implications. And I know Ari's going to talk later about the huge disparity
between the amount of funds that are given to etiological investigations versus investigations
on the immediate quality of life of Autistic and their families, but there are deeper ethical
questions as well.
PELLICANO: And the most obvious and far reaching implications of autism research are those
of cure and prevention. And this--although this might seem like science fiction to some,
and although the genetic and neurobiological complexity of autism might mean that we will
never find a cure or never be able to prevent autism, it is nevertheless the aim of many
researchers, funding organizations, and charities. And this is from the NIMH in the US in that
it says that it hopes that such research that it funds, it hopes that it transforms the
understanding and then treatment of mental illnesses, including autism, through basic
and clinical research, paving the way for prevention, recovery, and cure. And our funding
agencies in the UK are no different.
PELLICANO: So this is general aim or raiment for prevention and cure of mental illnesses,
including autism. So we're therefore left with this huge divide between what scientists
and funding agencies want and the Autistic community wants. As to the very, I guess,
the nature of the scientific agenda for autism
[music plays in background]
PELLICANO: It's a nice interlude. It's okay. So what do we do about this huge divide? So
these ethical issues are unlikely to be resolved because they depend on fundamentally conflicting
assumptions about the nature and desirability of neuro-cognitive difference. Nevertheless,
they ought to be attended to in some way. And like many of you here, my colleague and
husband Marc Stears and I have suggested that we need a new range of of participatory mechanisms
that should enable the scientific community, the Autistic community, and other concerned
parties to respond collectively to such entrenched ethical disputes.
PELLICANO: So. what is the path forward? We need a new dialogue. And we need this dialogue
because science is not impartial, especially in the context of such highly charged issues.
Scientific research has real implications for Autistics and their families. And scientists
can actually learn something from conversing, listening to non-scientists, especially Autistics.
We therefore have suggested that scientists must begin now to work collectively with Autistics,
and where appropriate their parents and carers, to create an open and participatory research
process from the very inception of an idea all the way to the dissemination of the research
findings.
PELLICANO: And we've suggested that there are three principles of engagement. The first
is that disagreements on what we we call the new sciences of autism is inevitable and must
be recognized. Consensus here should not be the ultimate goal. The second is we must recognize
that many concerned parties are currently excluded from decision-making or dramatically
underrepresented. And so we therefore must make sure that we make reasonable adjustments
in order to respond to potential disadvantages or power differentials of key participants
in the process, essentially making sure that everyone's voices gets heard. And the third
principle is that not all participants are equally affected by the impact of the new
sciences of autism. While scientists might be affected in some way, it's Autistics and
their families that are affected the most. And thus these parties should participate
fully in the decision-making process that shapes research and its application.
PELLICANO: However, there are immediate challenges from the scientific community to a participatory
framework for autism research. And these challenges were laid out--and it's obvious to me at least.
Recently by an article on the social and ethical implications of research for biomarkers for
autism, and although written by London colleagues of mine in fact, and although the paper's
very good at laying down the social and ethical dangers of biomarker research, it's treated
engagement with Autistics and their families as an afterthought rather than advocating
for involvement in the research process from the very beginning. And so we wrote a response
to say just that.
PELLICANO: But I want to end now with just a few of the other challenges that I’ve
been confronted with in the past six months when I've been talking to researchers about
trying to build a participatory framework. So this is what I want to leave you with--some
potential challenges to engagement. The first is scientific elitism. And this came up recently
when we were discussing participatory research in our lab with some of my graduate students.
And one of my students who's otherwise very pleasant, said, “but why'd we want people
telling us what to research?” And I think this question really reflects a scientist
knows best attitude, which might be very hard to shift. But I think it also reflects a misperception
really of what participatory research is. It's not someone just coming in and telling
a scientist what to do; it's a genuine collaboration between the scientific community and the Autistic
community.
PELLICANO: The second is a fear of engagement, a fear of engaging with Autistic people and
their families, a fear of the unknown. How might this engagement affect me, the scientist.
The third is a genuine indifference to the social and ethical concerns raised. The fourth
is that there is no prescribed way of doing participatory research. In my article with
Marc Stears, we were very clear not to kind of set out a prescribed way of doing it because
we believe that it will totally depend on the individual researchers, the communities
that they are engaging with, and the particular research question. And in that sense, participatory
research will inevitably be experimental. And I think that's a bit scary for scientists.
The fifth is that the lack of structural mechanisms to support it. And here I really mean funds,
I think. Participatory research is time-consuming; it's effortful, and it costs money. And it's
another potential challenge.
PELLICANO: The sixth challenge is that there's this need for researchers or scientists to
resolve conflict. So as scientists we're really trained to want agreement on something. And
I think this is something really that scientists really find it difficult to grapple with.
Because here, we can't expect that agreement will be the ultimate goal. And I recently
gave a talk at the London Autistic Rights Movement annual general meeting last week,
which was fantastic, and one of the members said to me, “It's not that--the Autistic
community readily know, are aware that consensus is not the goal here.” And he just said
that, “At the moment we've got the scientific community here and the Autistic community
here, and then just not talking to each other. And if we could just get them so they slightly
overlap and just start listening to our views and perspectives, then that would be a really
good step in the right direction.”
PELLICANO: And the final challenge relates to representation. So some researchers feel
that more able members of the autism community don't necessarily represent the views and
perspectives of everyone on the autism spectrum. And I'm not sure that this is actually a genuine
concern about representation, but it might actually come back to the sixth challenge
which is the need to resolve conflict. Because some researchers have suggested to me, “Well,
if people in the autism community can't even agree on a particular issue, how on earth
are we going to get agreement amongst the autism community and the scientific community?”
PELLICANO: So this is not an exhaustive list. This is just a personal list of of challenges
that have arisen during my conversations with scientists in the past six months. And that
have concerned me a little bit. I've no doubt that the way forward involves fostering what
Wendy Lawson calls interdependence. That's really crafting mechanisms of participation
and dialogue between the Autistic community and the scientific community. The final question
that I want to leave you with--and I hope that we'll discuss today--is how do we ensure
that scientists commit to such engagement? So thank you.
[applause]
NE’EMAN: Thank you very much Dr. Pellicano. With that, I'd like to invite our next presenter,
Zoe Gross, to take the podium. For those of you watching at home or in the audience with
a smart phones, the hashtag for today's event is #asanelsi.
GROSS: Hi, I'm Zoe Gross. I'm with Autistic Self Advocacy Network. And I'd like to talk
to you about bias in data interpretation. I'd like to start by introducing the concept
of ableism. For those of you who aren't familiar with this term, ableism is a systematic prejudice
against disabled people in society similar to racism, sexism, or homophobia. And like
all systematic prejudices, ableism is culturally ingrained, which means that to some extent
we've all absorbed ableist messages just by living in this society.
GROSS: So what we need to do is keep a watch on how those messages that we've absorbed
are affecting the way that we do science. And one way that these messages can have that
effect is through deficit language. So these are some quotes from studies on autism, and
if you look at the words that are being used--”overgrowth,” “access neurons,” “the systematizing
mechanism is set too high,” “Autistic people lack meta-cognitive ability,” or
else we have a “motivational deficit.” We have “deficient motivation to engage
with other people.”
GROSS: These aren't objective observations. These are value judgements. And these are
value judgements that are a reflection of societal ableism. And by letting these value
judgements about autism enter the scientific conversation, researchers are contributing
to stigma against Autistic people. Now we all know that scientific findings are distorted
when they're reproduced in the media, talked about by other professionals, so you got something
happening. For example, where Simon Baron-Cohen proposes that autism is the result of assortative
mating between high systemizers. And then you get Bryna Siegel, clinical psychologist
at the University of California San Francisco, saying that when two geeks marry that's bad
news for the offspring.
GROSS: So clearly this is a very negative view of autism and Autistic people. And now
it's disseminated to a wider audience through the news media. so let's consider a couple
case studies looking at negative framing and specific scientific studies beginning with
this recent study on social reputation. I don't know if any of you have seen this. What
these researchers did is that they had the Autistic participants in the study and the
controls, put them in a room. Either they knew they were being observed with the observer
in the room, or they had some idea that there was no observer in the room. So either the
observer's present or sort of behind a wall. And they found that the neurotypical participants--those
without autism or other disabilities--gave more. They donated more money to charity when
they were not being observed, whereas the Autistic participants--I'm sorry, they donated
more money to charity when they were being observed, when there was an observer in the
room, whereas the Autistic participants donated the same amount whether or not there was an
observer in the room. And this is the social reputation affect, which has been documented
in other studies.
GROSS: And how are they going to interpret these results? There are obviously a lot of
interpretations they could've taken with this data and where did they go first? Autistic
people may be immune to observer effects because we have less empathy, less intrinsic motivation
to help others. So where they went first was relying on stereotypes essentially. Where
they went next was deficit. Maybe they found--they had these results because Autistic people
lack meta-cognition or normal social reward processing. So something is wrong in our brains,
and that's why they had this data.
GROSS: Now again you can see that these are very negative value judgements. And among
these value judgements, what possibilities are never brought up? The interpretations
that are missing are anything that would view this difference as neutral or even positive
as a sign of integrity or honesty among the Autistic people because their donations came
from altruism rather than a desire to promote their own social welfare.
GROSS: So another thing is that these researchers were relying on stereotypes when they referred
to empathy. Now when they say that the lack of empathy in autism has been well established,
they're actually relying on studies that have been debunked. A lot of researchers have been
criticizing the idea of empathy as a monolithic trait which can be measured by one test and
instead they're breaking it down into several component traits or skills. So there's what
we would think of as empathy normally, which is affective empathy, the ability to feel
compassion, feel for another person. And then there's cognitive empathy or mind reading,
which would be knowing what someone is feeling without them telling you.
GROSS: Now, studies have found that Autistic people--the cognitive empathy aspect, the
mind reading, may be impaired, but the affective empathy is intact. Some people have been questioning
the usefulness of lumping those both in as empathy when really it's two different skills.
The disability community has also condemned the lack of empathy idea because in addition
to being scientifically wrong, it also has a huge impact on how we're perceived. You
know, by the stereotypes of Autistic people as dangerous, or uncaring, unable to form
relationships. And you can see that these stereotypes ,if we don't examine them, are
really damaging our ability to conduct research in an objective way.
GROSS: Here's another example of a study that was interpreted in a biased manner--the laughter
study. They did an acoustic analysis of laughter and they found that Autistic children, almost
all of the time when they laughed, it was voiced or genuine laughter, whereas the neurotypical
controls were laughing sometimes out of genuine feeling and sometimes strategically essentially.
They were laughing strategically. Now how's this interpreted? You'd think this would be
a good thing, genuine laughter, but they found a way to distort this to where, you know,
laughing out of happiness is actually a negative. It's inappropriate; it's not subtle enough;
it's not socially strategic. In fact, laughing out of genuine happiness is a deficit. You
can see here they say, "It contributes to the social deficits exhibited by children
with autism." So that's a pretty distorted reading right there.
GROSS: Now why do we care about bias? Clearly we care because bias is bad science. We can
see that culturally ingrained ableist stereotypes, especially if we're not conscious of them,
can lead to really faulty scientific logic and can distort our data. The even bigger
problem is that bad science leads to bad practice. People are going to take this faulty logic
and put it into practice designing interventions, you know, and policies that are going to affect
the Autistic community. So if we've decided that genuine laughter is a social deficit,
maybe the next step is using discrete trial training to teach Autistic people to laugh
in a fake way. And is that a legitimate intervention goal? Is that how we want to be using our
time and our effort as researchers? I don't think so.
GROSS: Bias is bad science. Bad science leads to bad practice. Bad practice harms real people.
That's why we care. What are some solutions? The first thing I would propose is switching
deficit language to neutral language. So instead of saying too many neurons or brain overgrowth,
we can simply say more neurons than controls, more brain cells than non-Autistic participants,
reflecting the data rather than any value judgements that we might bring to the data.
Next thing I would propose is community based participatory research involving the Autistic
community, Autistic researchers, Autistic organizations, in this research. because we
don't tend to approach ourselves with a deficit model. And looking at how Autistic people
view ourselves can cut back on some of this bias that other researchers may bring to the
table.
GROSS: And the last thing that we need here is an attitude shift away from this idea of
autism as an illness or an inherent character flaw to a natural variation in human development.
And if we can address this problem, it's going to make us better scientists, better researchers,
and more responsible professionals, because science is about observing what is, not projecting
our prejudices onto the world around us. Connecting autism research with a neutral framework rather
than a negative framework is going to produce better results, and it's going to lessen social
stigma. Thank you.
[applause]
NE'EMAN: Thank you very much, Zoe. Oh, our microphones are... Excellent. Scott Robertson.
ROBERTSON: See if I can get the slides up here. So my presentation is about expanding
community based autism research to address critical issues raised by the Autistic self-advocacy
community and its allies. You've already heard from two other presentations that have emphasized
that we need to be studying more of community challenges that face Autistic people and listen
to Autistic people when we are doing research. And my hat as part of the Autistic Self Advocacy
Network and other facets of the Autistic rights from the Autistic self-advocacy community,
and doing research, I really stand at the intersection of the two and I think that helps
me to really be discussing these issues.
ROBERTSON: So what issues do Autistic people care about? Well there are large scale daily
living challenges that face Autistic people in our lives on an everyday basis. Things
like employment. Many Autistic people are unemployed or under-employed. Things like
being segregated in our schools and not being included among our peers. Bullying, abuse,
and marginalization are much higher among Autistic people and other people with disabilities.
We lack support systems often in schools at the K to 12 and post-secondary levels that
enable us to achieve and enjoy the focus in our life that we want to pursue and truly
have the values of happiness that everybody should be able to have. We lack access often
to healthcare services, community living activities, recreation.
ROBERTSON: There's many, many, many barriers that could go on and on, but this is just
some of the challenges that are facing Autistic people on an everyday basis. And typically,
as researchers, we often study these societal problems. That's a large segment of social
science and health science and other facets of the research community that's studying
how we can be examining societal problems and developing solutions to societal problems
to improve people's lives and working with practice to do that. And this has often led
to many innovations and technology and support systems for both people with and without disabilities
for research that have affected practice and other means to support people.
ROBERTSON: So particularly for autism, research has increased over the last several decades
considerably. For instance, the search on Google Scholar that I did recently there were
more journal articles and conference papers published about autism--so academic research
papers--or nearly as many I should say in 2010 as in the entire decade of the 1980's.
That's a phenomenal increase in research in just the last few decades. So many people
say, "Oh, this is a good thing, right? We're studying autism research better; this is great."
But it's like research about what?
ROBERTSON: Well most of this research is still on causation and etiology of autism. Only
a very small amount is spent on quality of life research, service and supports, and particularly
Autistic adults. Research on Autistic adults is very much the smallest segment of the autism
research community. So how do we shift this and change this? Because ethically, we should
be focusing on what's meaningful to actual Autistic people. We should be shifting our
focuses around community living, quality of life issues that Autistic people raise. We
should be studying things like employment, inclusive education, and working with practitioners.
ROBERTSON: And Autistic people, and their families, and other stakeholders out there,
to be both increasing research on these areas and expanding funding from our government
agencies and from non-profits and foundations to support this research because often it
is difficult to be conducting research unless you have the money to do it. Researchers,
just like anybody else, are professionals. They're business people. And grants really
drive the research home. And without the grants that are focused on these areas, it is impossible
often to do research.
ROBERTSON: So community based research can leverage the perspectives of Autistic people,
and you can tap many different methodology and approaches to seek the perspectives. And
often you can do things like interviews, focus groups, surveys. But what's particularly valuable
often is doing what is referred to as community based participatory research or participatory
action research. The short for this is CBPR. It was mentioned earlier in Liz's presentation
and I'm going to go a little, just briefly, into what CBPR is, just to educate the audience
that's listening right now.
ROBERTSON: Community based participatory research involves bringing community members as equal
partners alongside academic researchers. They do not have more power or less power; they
are on equal standing and work together in combination in all phases of the research
process with academic researchers. So in the case of the autism community, this includes
Autistic people. This includes non-Autistic allies and family members and supporters working
together to conduct the research. And this includes deciding on what to study, how to
focus on it, how to get research funding for doing, conducting the study, collecting the
data that's involved in the study, and then analyzing it and disseminating the results
to the public and the academic community.
ROBERTSON: So you can see from this diagram here that shows development, implementation,
dissemination, all these processes should involve both academic researchers and Autistic
people and non-Autistic supporters. And one CBPR research group that's out there, and
we hope to see a larger growth of them over time, is AASPIRE, which is the Academic Autistic
Spectrum Partnership in Research and Education, which is a partner of the Autistic Self Advocacy
Network (and we're running this symposium today) [and] has been working on studying
several studies on health, wellbeing, and community participation of Autistic adults.
ROBERTSON: And particularly recently AASPIRE and ASAN received a grant from National Institute
of Mental Health to develop a toolkit to support interactions between Autistic people and health
care services because we thought that this is a challenge out there that Autistic people
have difficulties--often we experience difficulties with being able to go to healthcare providers
and interact with professionals who often don't necessarily understand our challenges
and difficulties we experience and understand things from our perspectives. So this tool
kit will help Autistic people to be able to interact with providers out there and make
their experience better so that healthcare is more accessible.
ROBERTSON: And we envision that more studies can be conducted out there just like this
that involve Autistic people, non-Autistic supporters, and academic researchers on a
level playing field to be conducting research. So I think that was my last slide. Thank you.
[applause]
NE'EMAN: So one of the basic foundational questions that has to orient almost all of
our discussion when we talk about the processes which construct research, which to some degree
is one of the main topics under discussion here, just as much as research processes itself,
is "Why do we fund research?" Quite obviously, the purposes we're trying to achieve are going
to structure the type of research we fund, how we do it, and, you know, who we involve
as part of it. And by and large, I think we can say that research is a society's investment
in how it envisions its future. We fund research to really try and pursue specific and measurable
objectives to uncover new knowledge, to improve quality of life, and also, quite frankly,
to assess the quality of what we're currently doing in support of those goals.
NE'EMAN: So if we're going to assess the autism research agenda--and I will say I start from
the value framework here that autism should be viewed as part of the larger scope of developmental
disabilities and part of the larger scope of disability experience more generally--but
if we're going to evaluate the autism research agenda, one of the things we have to evaluate
are what are the objectives of this country's disability policy. And then we can ask ourselves
the question, really, is the autism research agenda oriented in such a way to where it's
helping to accomplish those objectives?
NE'EMAN: By way of example here, we have a few foundational documents of American disability
policy that help us in accomplishing this. One of them is the Developmental Disabilities
Assistance and Bill of Rights Act. Passed in 1970, its basic purpose was to create a
cross-disability infrastructure to support the needs of individuals with significant
disabilities manifesting prior to age 22. So autism's part of this, intellectual disability's
part of this, cerebral palsy, Down syndrome, any number of other conditions. And it created
a series of--really, a developmental disabilities network of--three major entities in every
state: Protection and Advocacy agencies, public interest, which are public interest law firms
focused on the protection of legal rights, planning councils; and perhaps most relevantly,
the university-based centers focused on developmental disabilities research.
NE'EMAN: But as part of that creation in putting forward that grander strategic plan, the Developmental
Disabilities Act started with a very clear and consistent vision. The very first words
of the DD Act is that "disability is a natural part of the human experience that does not
diminish the rights of individuals to live independently, to exert control and choice,
to fully participate, and to achieve full integration and inclusion in the economic,
political, social, cultural, and educational mainstream of U.S. society." These are very
specific and measurable purposes. And the creation of a three-tiered network of developmental
disabilities network partners in every state is aimed at accomplishing those purposes.
NE'EMAN: Similarly, if we look at one of the next foundational documents in disability
policy. Flashing forward twenty years, the Americans with Disabilities Act, passed in
1990. Its purpose was to establish a comprehensive civil rights law aimed at non-discrimination,
reasonable accommodation protections, and so on, that would be broad-based, looking
not just at employment, which is what we primarily talk about when we discuss the ADA, but also
state and local government services, public accommodations in the private sector, telecommunications,
and so on. And really the purpose of the ADA was not just to establish some civil rights
protections, but also to serve as the basis for how we could revamp the broader scope
of disability policy to date.
NE'EMAN: And over the subsequent years you saw many efforts ranging from the Ticket to
Work Program oriented around revamping Social Security to the Supreme Court's Olmstead decision
oriented around revamping the Medicaid program and how it approached people with disabilities,
aimed at accomplishing the four goals of the ADA with respect to disability policy: equality
of opportunity, full participation, independent living, and economic self-sufficiency.
NE'EMAN You similarly see a consistent strategic vision for the Individuals with Disabilities
Education Act, which is again designed to ensure that students with disabilities have
access to a free and appropriate public education in the least restrictive environment. So having
really identified a few of the most important disability policy objectives that the United
States has, the question we should start with asking before we get to the autism research
agenda is, "To what degree does the general disability research agenda align with these
policy objectives?"
NE'EMAN: And by and large it does. We have here [a] list of the eleven long-term research
objectives of the Institute of Education Sciences, which is where most special education related
research is being funded out of in the U.S. Department of Education. I'm not going to
read all of them, but you can see they really span the broad scope of where IDEA requires
research, ranging from early intervention for IDEA's Part C programs to educational
pedagogy and other aspects of IDEA's service provision for individuals with disabilities
in the K to 12 system, to transition, to even aspects of policy and finance supporting these
issues.
NE'EMAN: Similarly, the National Institute for Disability and Rehabilitation Research
(and I note we have the former Acting Director of said institute here with us today) has
similarly focused priorities which, since NIDRR is really grounded in the Rehabilitation
Act, the predecessor to the ADA, are aimed at supporting those four goals of disability
policy under the ADA "quality of opportunity, full participation, economic self-sufficiency,
and independent living." Now we ask the question, "Does the autism research agenda align with
these policy objectives as the general disability research agenda has succeeded in doing?"
NE'EMAN: And here we see, quite frankly, a very different picture. I have here a graph
from the Inter-agency Autism Coordinating Committee, a body that I serve on along with
several other participants here, within the Department of Health and Human Services. And
this tracks all autism research funding in 2009, approximately, from at least all of
the six largest funders; this is both public and private. And what we find is there's about
a 314 million dollar pot. The single largest area of that pot is causation and prevention
at 32% or approximately 100 million dollars. And about half of that, although it's not
reflected in the graph, is focused on genetic research. And later this morning, we're going
to have some fascinating discussions with Dr. Alan Guttmacher about some of the potential
implications of that.
NE'EMAN: But even as causation takes up the lion's share of attention, those areas of
the autism research agenda which most clearly relate to federal disability policy objectives
have the smallest portions of this pie. If we look at where can I turn for services,
the component of the autism research agenda that has the most direct impact for IDEA's
guarantee of a free and appropriate public education, least restrictive environment,
or the DD Act's programs aimed at supporting quality service provision for both adults
and children with intellectual and developmental disabilities, we see only 3% of that vast
research funding pool. If we look at the area of the autism research agenda with the most
relevance for the ADA's goals around independent living and economic self-sufficiency, what
does the future hold, particularly for adults, we see quite literally less than 1% of the
autism research agenda oriented around these particular priority areas.
NE'EMAN: So we really are looking at an autism research agenda that's very much out of line
with federal disability policy objectives. I want to close by just putting forward a
few possible reasons for that that might help inform how we look at a solution. One of the
potential reasons may relate to history. And autism's definition has shifted from being
a psychiatric condition to a developmental disabilities over the years, and at least
at one period in the autism community's history, the Bruno Bettelheim years where Dr. Bruno
Bettelheim put forward this horrible, almost blood libel, claiming that autism was caused
by poor parenting. The question of causation was exceptionally important, even to non-researcher
advocacy groups, even if that question was mainly oriented around debunking an inaccurate
theory of causation. And as a result of that you saw tremendous amount of investment on
the part of the non-research community in pursuing particular alternative theories of
causation to replace what was a fundamentally flawed one.
NE'EMAN: You also saw--and partially this is a result of that--a lack of a consistent
structure in line with federal disability policy objectives with regards to the autism
community. The Combating Autism Act, which authorizes most federal autism research, didn't
actually create new authorizations when it was passed. It only pumped more money into
agencies which already had the authority to do what they were currently doing. And, you
know, with a lack of any strategic vision or clear and consistent purpose for those
new funds, some degree of rent-seeking seems to have occurred. Namely, those entities and
individuals who are already dominant in the autism research agenda have the ability to
leverage their expertise. If you have experience with doing autism research, you have expertise
in autism research, and as a result you have a disproportionate say in where future autism
research funds should be spent in order to reinforce existing biases.
NE'EMAN: And needless to say, the fact that there's little representation for self-advocates
in the funding process has served to exacerbate these problems. My final slide lists a few
potential policy solutions to address this, both with regards to enhancing the role of
the self-advocate stakeholder group and aligning existing autism research funding mechanisms
into the scope of broader disability research funding. I think this is going to be one of
the most interesting topics for our group discussion. And with that I want to close
and thank you all to your time.
[applause]
UNKNOWN: I have a question. A respondent from here or respondent from there?
NE'EMAN: Respondents, and all of our group discussion is going to take place at this
table.
UNKNOWN: Really.
NE'EMAN: With that in mind, Sue is our first respondent. The way this is going to work
is our respondents are going to kick off. We have about twenty to thirty minutes of
group discussion allocated, and then any of us around the table should feel free to weigh
in. And so, Sue and then Marcela.
SWENSON: So how many minutes do you want me to speak? Because I can go on and on. My family
coat of arms says "carpe podium."
NE'EMAN: It's a good thing I didn't let you get to the podium. Use your best judgement.
SWENSON: Yes, sir! I really appreciated everyone's remarks. Liz, Zoe, Scott, Ari, these were
very complete and interesting remarks, and I think a really great example of how scientists
make a tremendous mistake if they do not engage with the community of people who are affected
by their work. There are insights; there are new ways of looking at things that help scientists
expand their work in significant and important ways. I want to make couple of other remarks
though.
SWENSON: No one mentioned business ethics. I am by training an MBA marketer, and I happen
to believe that business ethics are a very important part of how we move forward. The
New England Journal of Medicine, in the current edition, has an article showing that anti-depressant
research has been skewed over the years by the fact that all negative research was suppressed.
It's really important for us as we go forward to understand that the kinds of comments that
Zoe made about just using your own values and projecting them onto your science gives
us bad science. It's not just that it's bad advocacy; it's bad science.
SWENSON: And I think it's important for us as we look forward to perhaps review some
of the research that has been done on behalf of people with autism--I'm sorry, Autistic
people--and really see have any of these flaws occurred in the work that has been done about
autism because (speaking now as a mother) the sales process of reaching out to a parent
of a child who's different by saying, "Your child is deficient; your child is a freak,"
is enormously disruptive of what is the most fundamental basis of all of human society,
which is family relationships.
SWENSON: I want to tell a quick story that isn't about an Autistic person, but I think
has universal application. I was training once a group of parents and a group of young
self-advocates. And I came on behind Lou Brown. And Lou Brown said, "You have to go to the
school and make their life a living hell. You have to get this program and this program
and this program and this program, and you get all these OT's and PT's and speech's and--and
you've gotta--you've just gotta go out there and, and nail 'em." So I asked the parents
in the group, "Which of you is the best advocate?" And I gave them five minutes to caucus. And
a woman stood up and said, "I'm the best advocate." And I said, "Tell me how you know that." And
she said, "Well I have a restraining order against me at my school."
SWENSON: And then I thought, "Okay, now I gotta dig myself out of this hole, because
my whole point was if you're going to work with schools, it has to be all positive."
The relationship to the child is positive; the relationship to the teacher is positive.
Because I happen to believe you can only build on positive relationships. And I think scientifically
that will be borne out.
SWENSON: But then I turned to the young people with disabilities who were in the room and
said, "Well what does it feel like when your mom goes to school and makes their life a
living hell?" and I thought it was a good question. I thought I was going to get answers
like, "It disrupts my feeling of belonging in the school" or blah blah blah. But the
youngest kid in the room, who was a wheelchair user, started to cry, and I thought ,"Oh,
great. This Swenson, you dug a big hole for yourself." He started to cry, and he said,
"When my mother goes to school and yells at them about how I need a different IEP and
more service and more everything, she's not mad at them. She's mad at me because she wants
me to be able to walk. And no matter how much therapy they give me, I can't walk."
SWENSON: That was a moment which completely changed my advocacy and made me much more
committed to the idea that my own son's disability had to be described, even in my heart, not
as a deficit but as a difference. It's really hard to engage scientists in these levels
of thinking because they are so busy with the science that they sometimes forget that
empathy with the people for whom they're speaking or about whom they're speaking has to come
first. Marketers know this. We know that if we're going to try to, quote, "sell" an idea,
ethnography is the best place to start. Deep ethnography. Sitting down and really trying
to understand the people that you're talking about and what are their needs and what are
their challenges and how do they describe it and how we can we move forward from that.
SWENSON: So in business ethics we also concern ourselves with vulnerable consumers and creating
special rules for people who may be in a place where their decision-making is not quite up
to par. As a parent, allow me to say I believe parents of children with significant disabilities
are in this place of being a vulnerable consumer. We often think about informed consent for
people with disabilities and how do we arrange that. But I think we need to be looking at
parents of kids who have significant disabilities.
SWENSON: For myself, twenty-eight years of sleep deprivation, it is a miracle that I
did not go postal at some point. And I think if someone had said to me, at some early stages
before I had access to advocacy and before I had an understanding of what the nation's
goals really are for people with disabilities, if a scientist had reached me at that early
phase and said, "Can we enroll your son in a study of some horrible thing?" I think I
might have signed on and had the kind of disruption in my family that the young man in the wheelchair
was describing in the session.
SWENSO: So I think there are enormous social and cultural and familial and emotional risks
to autism research that are not in any way covered generally by the process of how we
and the federal agencies decide what we're going to fund as a research project. I argue
therefore for the inclusion of different disciplines in research teams. And also, guys, you cannot
sell a face cream to me in a department store with the paucity of evidence that you can
sell a 40,000 dollar a year behavioral intervention to a parent of a child or to a school district.
I'm sorry, but the FDA doesn't have rules for behavioral interventions or how we oversee
them or how we look at what the unintended or negative consequences might be of what
we're prescribing for someone.
SWENSON: So that being said, I think we also need to look at what marketers call decision
bias. We know that many people are saying certain trademarked interventions really work,
and my kid had it and it really worked for him, but marketers can tell you that anyone
who has invested time or energy or money in a decision has a bias to say that it was the
right decision. And parents are in no way exempt from this this flaw. This difficulty,
this problem, it's a human problem, so one which we need to be thinking about.
SWENSON: I want to point you at Thoureau's article on civil disobedience. I think all
Autistic advocates should read it and study it and understand it because it will help
us understand, as citizens of a society, that policy and law are not the highest standard
of our ethical behavior. They are in fact the floor and not the ceiling. So as we begin
to think about policy implications for science and research into autism, we really should
be thinking also about how we strengthen our social relationships with each other and our
ability to describe an ethics that is beyond public policy. Thank you.
NE'EMAN: Thank you. So you know, our respondents can feel free to be as extensive or as informal
as they'd like. In that case, let's go to group discussion, and Marcela, feel free to
weigh in at any time. Who wants to say something about this morning's panel we just had, and
Sue's, I think, exceedingly stirring responses. Dr. Donnellan.
DONNELLAN: That was wonderful, Sue; thank you. I had a thought as I was listening this
morning that--and I'm afraid I may not say this as clearly as I might be able to one
day, but it's amazing that we are talking about a phenomenon which is autism, which
is by definition an interactional phenomenon, that is, it only appears in interaction. It
isn't a rash, and it isn't, you know, a crippling disorder of some sort. And yet we are so ready
to take an outsider's view and assume that our view of what's going on is in fact the
same as that person's view, without acknowledging that our view is colored by that interaction
and not informed by the the experience of the person with the label.
DONNELLAN: And I hope that as we talk today we realize that it isn't just good policy
to have people who are Autistic and their advocates part of this process for all of
the reasons that we're saying, all of which I certainly would agree with, but because
it literally doesn't make sense in this particular situation not to have those perspectives there
because there's no way that somebody who is doing research funded by NIH, for example,
and has never met a person with autism except for the twelve seconds that they came through
their scan in some way, really can understand what it is they're talking about.
DONNELLAN: I'm happy to be corrected on this, I really am; it just really struck me that
this is nutty, what we're trying to do. And no wonder we have gotten such a short distance
with so much money and so much time.
NE'EMAN: Samantha?
CRANE: Can I take your microphone?
NE'EMAN: Yes.
CRANE: Great. Our microphone. I was really interested in what Sue was taking about in
terms of suppression of research that found in anti-depressant cases that found that anti-depressants
had no effect. And one of the things I think that might connect to is what Zoe was saying
about assuming deficits. And I was wondering how many studies have been basically thrown
in the trash and not published after they found actually no difference between Autistic
people and non-Autistic people, or in fact found a difference but it was not the difference
they expected, or an advantage. And so I think it's really important when we talk about research
ethics to make sure that all research is publicized so that it's available for meta-analysis and
criticism so that even if a study does not find a difference--and not just no significant
difference but no difference--people will be able to find that research and learn from
it.
NE'EMAN: Other commenters?
SHATTUCK: So several of the speakers this morning talked about community based participatory
research methods as a goal and a solution. As a researcher, I'm in the midst of crafting
my next big project, and it's looking at barriers to accessing services after young people with
autism leave high school. Because as you all know, there's kind of a cliff that we push
people off of when they leave the special ed environment and it's very difficult to
find help and support in the community. So as I begin to craft this research project,
I'm committed to a community based participatory research approach, but I have a couple of
questions and I'm wondering if you can all help me figure this out.
SHATTUCK: So one, obviously the autism community is an extremely diverse community that's characterized
by a number of divisions and conflicts. And second, a particular concern of mine is with
issues of equity across racial, ethnic, and socio-economic strata. And I don't see a lot
of diversity in that regard in many of the autism community events and groups that I
interact with. So as I move forward, I guess I'm wondering how do I embrace this ideal
of community based participatory research given these facts, this situation. What would
you recommend I do?
NE'EMAN: Let me weigh in briefly on this because I think -- I would throw out there -- is I
think you're actually exactly the right stage to have that discussion. The ideal behind
CBPR, and I think Scott can speak more to this in his slides, is you involve the target
community not just when you need some test subjects to poke and prod but, you know, in
every stage from the crafting of the grant proposal, to the study design, to the data
collection, to the interpretation of results. And I do think as part of that you do get
into this question of how do you ensure equity and how do you ensure diversity given the
sort of very extensive and diverse nature of our community.
NE'EMAN: On the diversity question, you know, so on our project with AASPIRE on healthcare
access, we're not the only community partner and I think that's very valuable. You look
to partners who can represent one perspective. Maybe you identify others who can represent
another perspective, be it a local perspective or a particular minority within a community.
And I think that's actually fairly critical. On the sort of broader question of how do
you ensure that you're dealing with the right population within a community, you know that's
obviously more difficult. I do think there's something to be said, though, for crafting
the community partner you work with sort of in line with the type of research that's being
done.
NE'EMAN: Obviously, if you're conducting research in higher education you're going to want to
work with folks who are in or who have recently been in higher education. If you're conducting
research on, you know, folks who are transitioning out of institutions, you're going to be wanting
to work with, I think, a very different population. So I think it's important, you know, that
we on the self-advocate side acknowledge the self-advocate community is by no means monolithic.
And it's very important that we have partners at the table who can represent those diverse
experiences.
ROBERTSON: So, just to dovetail a little bit, the AASPIRE that we mentioned, the Academic
Autistic Spectrum Partnership in Research and Education published a journal article
actually in 2011 about how AASPIRE came together, its beginnings and the processes, not about
the empirical kind of gathering of data and the analysis, but really reflecting on the
CBPR itself in the journal, progress in community health partnerships, research, education,
and action, that you can find online. And the title of it is called "Collaboration Strategies
in Non-traditional CBPR Partnerships: Lessons from an Academic-Community Partnership with
Autistic Self-Advocates." And they emphasize particularly Autistic self-advocates in the
title even though there are non-Autistic people as a partnership because it's more of a novel
thing for Autistic people to be included among CBPR research.
JORGENSEN: May I make a comment?
NE'EMAN: Please. Anybody can make a comment.
JORGENSEN: Oh, thanks. I don't know if my mic is on, but I'll speak a little bit more
loudly. I think there's an urgency to influence research more quickly than maybe some of the
policy recommendations will actually come to pass. Sometime within the last 10 years,
and I'm sorry, I can't remember what the citation is, I read the results of a study that investigated
the force and velocity of head-hitting for self-injury on people with autism who were
living in institutions. And I want to know today, how can we stop the IRB's from approving
research like that? How can we stop the research scientists from thinking that that's even
a reasonable thing to research, and how can we stop journals from publishing it?
UNKNOWN: And how can we stop people from putting people in institutions where those behaviors-?
JORGENSEN: Well, exactly. I mean if you have, you know, money and your career is research,
how could you possibly make the ethical decision that you'd spend your time on investigating
this instead of getting people out of the institution?
NE'EMAN: Let me turn that question around to--and please excuse me for putting you on
the spot--but to our several federal partners who are at the table who do fund research--and
I guess the question I would ask you, you know, obviously without making any commitments,
but you know, there are different ways, and you folks know the levers to influence the
kind of research that's done and influence the types of procedures that need to be put
in place around ethics. What are the options out there? If you want to influence the scope
of a field, how do you go about doing it over the long term and how do you go about doing
it over the short term?
GUTTMACHER: I think the microphone was given to me so I will speak. But also I was actually
about to--I was raising my hand to pick up on something that Sue notated, which I think
plays into that question, Ari, which is if we want to reach the research community and
make CBPR a larger part of that, make the Autistic community a larger part of autism
research, it is important to be very practical and think about what is it that motivates
researchers. Some researchers are motivated by wanting to do the right thing, so I would
not abandon that as a strategy; however, I wouldn't depend upon that as a strategy.
GUTTMACHER: And realize what are the universal motivations of researchers. One, doing what
they perceive to be good science. And two, getting funded. There are other motivations
as well, but those are probably the two universal ones amongst researchers. So I think, as is
the case that making the case about how changing the way much autism research is done makes
the science better is an incredibly important argument that needs to be well-articulated
and articulated many ways to many different folks. But that's the most probably fundamentally,
I think, important way to do that.
GUTTMACHER: The second part, which also I think gets to part of answering your question,
Ari, it's not just of course the individual researcher making the decision about what
to do; it's the question about decisions about what gets funded. The predominant point in
the decision-making process in federally supported, in fact, in most supported scientific research,
is the review process. same as it is in terms of what gets published. What gets published?
It's two things. One is it's wanting to submit it for publication, which is where usually
the negative results or no results fall out of the equation, but for something that's
submitted anyway, it's the review process. And it's certainly true in funding.
GUTTMACHER: Another thing that links all researchers is believing that the review process is fundamentally
flawed. How they think it's fundamentally flawed varies from researcher to researcher,
but almost every researcher complains about the review process. which is interesting of
course because it is those same researchers who are the reviewers. Most of scientists
think that, you know, they're wonderful people, but somehow those other people, those reviewers
of which they--anyway. But I think affecting the review process is an important part of
that, and that's something that Ari and I have talked about some before.
GUTTMACHER: And I've talked about lots of other people about this, too, is that we need
to obviously do a better job of involving those affected by research in the review process.
Now that gets somewhat difficult because one of the flaws of the review process often is
you have research in, on different conditions et cetera that are all reviewed by the same
panel, so how you enrich that panel appropriately is a challenge. It's not one that can't be
met, but it certainly is a challenge to that. But I think that's an important--in talking
about this whole process, the reality of it is that that review step is a very important
one. Then of course that gets to a lot of research.
GUTTMACHER: But then also, fundamental questions about decisions, if you go back to Ari's pie
chart, about, you know, where do those dollars, you know, what is that pie chart going to
look like in ten years, part of that is the review process; part of it's good science,
et cetera. Part of it's societal decision making about which parts of the federal bureaucracy,
non-profits, et cetera have funds to invest. Because different parts have different reasons
for existence. They have different contexts that they bring to the table--appropriately--and
different perspectives, so that part of the simply [unintelligible] decisions about where funding
for research sits in the federal government. I hope that's at least partially responsive.
NE'EMAN: By all means. That's exceedingly responsive. I think we have time for one more
comment on these questions, maybe two, before we move to our next panel. Joanne and then
Anne Donnellan will as, as she often does, get the very last word.
CARTER: I just wanted to introduce into this conversation the role of the legal community,
and I think that a common theme that emerged across the speakers this morning was need
to promote more of a relational approach to research. And I think it's important to promote
that collaboration and that those relationships between lawyers and legal advocates and the
scientists and researchers. Ari did an excellent job of walking through some of the key federal
disability policies and laws, and in terms of enforcing the rights in those laws, I think
that promoting that relationship between lawyers and scientists and researchers can really
help in terms of making sure that we have enough evidence to support the legal arguments
that we're trying to make, and also in making sure that scientists and researchers are selecting
and implementing research that is more consistent and more aligned with those legal rights that
are embedded in the federal laws and policies.
DONNELLAN: I sometimes say this light-heartedly, but in this case I'm hoping that it might
help us over the day to focus. I have a young friend who is a researcher in the field of
geology. And since I know essentially nothing about the topic, I had the opportunity one
time to spend a couple of hours with him. And I asked about it, and about the field,
and, you know, what kind of research he did and don't ask me, but, you know, it was very
interesting. And I said, "How do you get funding in geology?" And he went through a little
list of different ways including, you know, oil companies and so forth. But he said, "The
big thing is, if you want funding in geology, you have to make sure someplace in your proposal
it says that you will--this will help us predict earthquakes."
DONNELLAN: You know, and I'm quite sure he's right about that. But the reason I bring it
up here is not just to say something light, but to say maybe we need to look at that sentence.
Maybe we need to look at what are the one or two or three things that we really do want
people to hear, that if you really want to get long-term funding, if you want to get
people behind you, at least these things should be present in your research. See if we can
do it.
NE'EMAN: I think that is an excellent summation and let me just say during our working lunch
period, we're going to be going into small group discussions and coming up with some
key policy recommendations. I would love for the research processes working group to take
the time to come up with some of those high level recommendations as to what those two
or three things are.