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NE’EMAN: We are going to get started.
Dr. Donnellan will be with us in a moment.
I think we'll get started without her.
Can we find out--So Marcela's going to be
reporting out from the research processes working group.
Anne is going to be reporting out from--
oh, excellent; she's back--from one of the other working groups.
And who's reporting out from the third work--
oh excellent! Excellent.
Who would like to report out first?
Dr. Shattuck, the floor is yours.
SHATTUCK: All right, yes. Well I noted in
my group that years and years of schooling,
if nothing else, I got good at taking notes.
But as I said in our small group, I expect my
fellow group members to interrupt me as needed,
if I get things wrong or misstate things.
So I have a little checklist of recommendations I'd
like to share with you. We talked a lot
about conflict of interest issues, and
noted that the notion of conflict of interest
can occur across the lifespan of the research cycle,
from conceptualization to funding review,
to the way the research is conducted, and
to the publication process and dissemination.
And we recommend that reputational profits and benefits
should be treated in the same way as financial benefits
in the conflict of interest process.
And by reputational--
UNKNOWN: What was the first word?
UNKNOWN: That's right, that's--
SHATTUCK: Reputational profits and benefits,
which we discussed as being--at that time
we were talking about the fact that in autism intervention
there are a number of sort of name-brand interventions,
and that oftentimes researchers have a
reputational investment in a particular methodology
being, quote, "proven to work."
UNKNOWN: Is that an actual term,
or did you guys coin that?
SHATTUCK: I don't know. Did we coin that? Could we--
UNKNOWN: I think you did.
SHATTUCK: Reputational profits and benefits.
I don't know. Oh there's an article title!
UNKNOWN: If you invented it though, that would be reputational profit.
SHATTUCK: Caught me! Caught me! All right.
We talked quite a bit about the changing nature
of genetic testing. And there's a confluence
of two trends that are concerning.
One is that there are an ever-increasing
number of conditions that parents can test for.
And two, that the nature of the information
that is yielded from the kind of this new generation
of genetic testing is increasingly probabilistic.
It doesn't yield a yes-no, this person will have it,
this person won't have it. It's really kind of painting
a probabilistic curve of possible outcomes.
So, we weren't entirely sure what to do with that.
But one specific recommendation was
to increase disability rights training in medical genetics
and counseling training settings, and
to connect with other disability groups around
this as a way to find common cause.
And another related recommendation was
to improve access to real-life stories and real people
in the genetics testing setting, so that parents
who are faced with these decisions can
actually interact with real human beings
who are either adults with autism or family members or whatever.
And that these are kinds of issues that are
natural joining points for other disability groups.
Did I capture that? Adequately? In my group? Is that?
Okay. We also talked--oh, I got a whole bunch here.
NE’EMAN: I'm looking forward to this if we have time.
SHATTUCK: We talked a lot about the use of aversives
and, you know, there was a discussion of
whether we should recommend banning use of
aversives in all situations under all circumstances.
And there was some discussion about well--if yes,
then how would we define aversives? There’s a sort of
a definitional issue about what counts as an aversive
under the law or under people's felt experience
in terms of, quote, "the extinction of maladaptive behaviors."
And we had some eloquent examples of that.
We also talked about recommending, sponsoring research
into the prevalence and distribution of types of aversives,
including pharmico-therapy, trying to really get
more of a population-based understanding about
how commonly used aversives are, the different types
of aversives that are used, whether that
distribution of types of aversives is equally distributed,
or if there are some particular sub-groups who are more at risk
of having aversives applied to them over other groups.
We also talked about-- I'm sorry.
DONNELLAN: Could I ask a clarifying question?
SHATTUCK: Yeah, yeah.
DONNELLAN: Since is spent half my life on this topic.
Was there any discussion--
NE’EMAN: Can you make sure you're being picked up by the microphone?
DONNELLAN: Of separating out that which is an emergency,
necessity from an actual intervention, or an actual [voices overlap] [unintelligible]
SHATTUCK: Well, as a matter of fact,
there was quite a bit of discussion about that.
DONNELLAN: Kids going out the window is one thing,
but if that happens a lot, you can't rely on restraint
to keep that kid from going out windows.
SHATTUCK: So we had a lively discussion about
both emergency and short term, and
exceptional circumstances clauses as things
that need to be investigated more.
And there was concern, specifically that these exceptional circumstances
and emergency and short term clauses, with respect to things
like emergency and short term residential placement,
or emergency and short term seclusion, and so forth--
that those can become a gateway to things that
we would ordinarily not dream of doing.
And that there's really a need to kind of review
and catalogue the different settings and circumstances
under which these exceptional circumstances clauses
can serve as a gateway so that we can have
a better understanding of that.
UNKNOWN: Certainly there are [voices overlap] [unintelligible]
SHATTUCK: Did I capture that adequately?
BASCOM: Can I say a little more?
SHATTUCK: Yeah, go ahead and elaborate, please.
BASCOM: Is this okay? Okay, so for example,
if I worked with a student who was going to be moved
to residential placement for his school days, for
his extended school year, for summer school,
and everyone in the IEP meeting knew that he was
going to have a hard time transitioning,
which would mean he would regress, which would mean
he would need to be there for the next school year
because clearly this public school would no longer
be the least restrictive environment, and then since
the home to school transition would be so hard
and contributing so many more behaviors,
clearly he would need to be moved there full time.
And this is not the intent of an emergency clause
or a clause that says like, you know, when the student
is attacking someone, yes, keep him from
hurting another person even if that involves restraint,
but it's often the effect. And so our recommendation
is for some serious investigation into how that works
and how that can be stopped and prevented. Is that?
SHATTUCK: That sounds good.
SHATTUCK: And we had one more recommendation
that relates to an issue that came up in a number of presentations.
In research, we often call it the file drawer problem.
It's the issue of when you have no findings
or findings of no treatment effect or a finding
of no differences between groups,
that oftentimes those findings are not published,
and that there needs to be some kind of repository
for null-finding reports, particularly in
the world of pharmaceutical and behavioral intervention trials.
But we argued more broadly that there might be
some kind of repository set up for
null reports in research. And that's our list.
NE’EMAN: So let's hear from the other groups,
and then let's mix it up and see what materializes.
Anne, you want to go next?
DONNELLAN: Yes. Our policy suggestions, which we didn't
get a chance to do much with, we just wrote them down --
spend more time researching social psychology of
providers, researchers, institutional context.
In other words, what's happening with those variables.
More research on self-reported quality of life
for medications and behavioral interventions.
More research on universal design in classrooms.
There was some shorthand going on on the
board that I was typing from--what's that?
UNKNOWN: That was including social, emotional, [am i?]
right? It was moved to social [unintelligible]
DONNELLAN: Oh yeah, it was written like it
was a different one, pedagogy
emotional regulation in social relationships.
DONNELLAN: New diagnosis of sensory-dash-movement disorder
without social characteristics in DSM,
should delay in speech be removed from ASD,
will it delay or leave out AAC speech service supports?
That was mostly comments on the actual DSM and the new wording.
Think about best way to list and organize the systems,
one from column A and one from column B, and with C,
you get egg rolls apparently.
Severity scale is problematic,
more attention to autism phenotype in females and minorities.
We could clean up the language here if you'd like.
Improving demographic information across all studies,
disaggregation of role for development of core values and principles,
discrete information on age, gender, age of person
versus age of onset, funding agencies will adopt
ethical guidelines, require agencies to collaborate with--
I'm not sure which one we were talking about, some agency--
and other self-advocacy organizations.
UNKNOWN: [unintelligible] Inter-Agency Autism Coordinating Committee.
NEEMAN: Such as it is.
UNKNOWN: And other self-advocate agencies.
DONNELLAN: And other self-advocate agencies.
Okay. How might history of rights and services
of people with intellectual disabilities
parallel Autistic history? We didn't know
where to put this, but I think it was Sue's comment
that so much of what's being discussed in autism
has a trajectory that looks just like
what was true in the other disabilities.
Prioritize funding and priorities that
move away from solely medical model.
Use functional assessment to determine needs and services.
Get away from medical models, intensity of support scale
for example. Unpackage supports to better personalize services
so people don't have to get all of this.
If you want that, yes we do it, but you do it over here.
Look at intersection of legal rights and civil rights
and human rights as we think about any research project
or service or intervention. Prioritize and promote
research--non-medical research--that embraces,
at least in part, a contextual model of disability,
educational--see if there was another word and I missed it--
a contextual model of disability in education
Does that sound good?
Okay. I'll fix it. People with autism participate
in research about themselves and autism,
to design, prioritize, and interpret.
People with autism should be involved in all levels of research.
Acknowledge the sometimes research strengths and
gifts of people with autism, full picture over the lifespan
and how to capitalize on these. Research to
build on strengths rather than just deficits.
Research and policy that shifts the deficits from
the students to the environment, curriculum
instruction available, technology, workplace, etcetera.
Eliminate--oh boy, this was all initials,
so I'm not sure I--eliminate EIS for special ed and--
NE’EMAN: I think that might be IES.
DONNELLAN: Okay. If I could do shorthand,
I'd still be doing it and not be a professor, so.
Eliminate IES for special ed. Research in general ed
must include students with disabilities
is really what the point of all that was.
NE’EMAN: I think I--not to interrupt, but I'm
looking forward to the discussion on that point.
DONNELLAN: Okay. have policies to remove
research from intervention-slash-treatment
to customization of supports.
Include individuals with autism on IRB boards
and peer review journals that people with autism
are participants in the study.
Consider greater alignment between ESEA and IDEA.
Prioritize and support projects, I guess.
Put Autistic people on faculty and on research projects.
Have conflict of interest statements on every submitted
and published study--that speaks to what was already said.
If researcher is making money off the intervention,
somebody outside has to evaluate.
I don't think we've said that. Not yet.
Require long-term follow up. Encourage subjects,
especially recovered people, to tell their story.
Various--these were mine. And by that time, certain people
were in the room yelling at us, so I just said
we'll just put them on so--
NE’EMAN: Yelling is such a harsh word.
DONNELLAN: So I'm not wedded to them.
UNKNOWN: [unintelligible] quality of work ethic.
DONNELLAN: No quality work. Barry is just--
NE’EMAN: Expressing a commitment to a timely schedule. [chuckles]
DONNELLAN: Diagnos--to diagnosis in all--in adulthood.
Clarify issues of informal diagnoses, self-identified,
and peer confirmed diagnosis.
JORGENSEN: So, again, what we didn't do is we didn't
decide if we all agreed on all of these.
These are just a brainstormed list.
And so we also did not prioritize which were
the ones that got the highest agreement in the group.
But if you think that would be helpful, we could do that
via contact with one another on email.
DONNELLAN: And also kind of put them together in groups
so that it's a little easier to understand.
NE’EMAN: So you're the folks that volunteer yourself
for homework, okay. Yeah. No, I think we all remember you.
No, that's fine. Marcela, do you want to--
are you ready to do the reporting out
from the last session?
MUSGROVE: All right. So our group started with,
what should the earthquake questions be. No, I think that was you.
Okay. So we asked if autism was already the earthquake.
And we did mention the importance of
socio-economic diversity and gender, as well as CBPR.
UNKNOWN: We can't hear you.
MUSGROVE: Okay. Well I was just talking about
the earthquake questions being socio-economic diversity, gender.
NE’EMAN: I'm sorry. In case folks don't recall,
can you remind everyone what the earthquake questions are?
MUSGROVE: The things that are necessary in the project
that are going to get funded that kind of--
DONNELLAN: In geology, as I said how do you get money?
And they said, well there are a lot of ways,
but you always have to make sure that you tie it
somehow to predicting earthquakes, which, by the way,
he said will never happen. But--
MUSGROVE: Okay. And so we also talked about
the hierarchy of evidence, where there's a need
for more foundational and exploratory research,
that for every RCT there should be 10 to 15 exploratory studies
and expert panels. And that qualitative research
sometimes got undervalued and we should be
emphasizing more CBPR--community based participatory research.
We talked about trying to tie some grant funding
to educating grad students on value systems.
And as well as trying to get more self-advocates
and disability representation on IRBs and
in the review process. And that's mainly it so.
NE’EMAN: Does anybody else in that group want to add anything?
ROBERTSON: It just, specifically, one of the things that,
for instance on the training end if you will,
one of the routes to getting more researchers
to understand the actual values in all the
other discussion we had today--this kind of focus--
is to put it into training.
But how do you put an accountability system in place?
So we thought, can you tie that back to funding?
And because of the fact that most, grants--
there's an intention for researchers, for professors
to be using a lot of the money to have their graduate students
doing a lot of the work, and to be receiving training for that.
So why not make it a criterion of grant review,
and to be able to get the grant you need to
have this in place, just like there's
diversity provisions in grant review often,
where you have things about how you considering
for diversity in your research.
NE’EMAN: I'll throw one more thing out there
that I think came up in the beginning of our workgroup
that I don't know that we covered in the summary.
Someone--and since we're operating under Chatham House rules,
and we're not attributing anything, I'll protect
their anonymity--but that someone is a genius,
whoever they may be--it was not me--
but somebody came up with the idea of
requiring that if you receive public funds,
public research funds, in order to develop an intervention,
that you may not copyright or trademark that intervention.
So I think that goes to the point you folks
were making in terms of business ethics and I think
it puts forward that conflict of interest idea,
plus quite a bit more. So I'm very interested
what folks have to say about that.
UNKNOWN: Well I see an issue too though
with reputational thing that it's not just business
NE’EMAN: No that makes sense.
DONNELLAN: the great intellectual question:
where's the next grant coming from.
NE’EMAN: So, I’m going to make a suggestion here.
I'm going to suggest we sort of discuss this
as a group until the 3:30 end time. And then I'm going to ask for any symposium participants
who are willing to do so to stick around afterwards
to engage a bit with our audience who has been absolutely fantastic,
and I think really, very interested in participating
in the discussion. I apologize for such a packed schedule,
and did not have more room for that.
UNKNOWN: [unintelligible] tremendous job of
bringing the right people together to start this conversation.
And, during one of the earlier [unintelligible]
Ari was absolutely right that one of the first findings
[unintelligible] probably bring more people into [unintelligible]
NE’EMAN: Absolutely, absolutely. I mean,
I could see us doing this in every city.
I think this is incredibly important.
UNKNOWN: That's right.
UNKNOWN: A tour bus.
NE’EMAN: Ask the people with the checkbooks.
But, let me throw out a, I think
an exceedingly provocative question, which should
promptly have all of us jumping at each other's throats
for the remainder of our time.
If we could only pick one of the recommendations
that we all threw out just here and now,
one policy recommendation, what should it be? Go.
SHATTUCK: All right, so I'm going to
completely bypass your question.
NE’EMAN: So it begins.
SHATTUCK: I’m going to a total end run around that.
So who's the--you know, because I’m obsessed with
what I call deliverables. My former career background
is as a building contractor and construction manager
before I went into academia, and I'm always thinking
about what is the job that we have to get done,
and how do we get it done. So, who's the most effective,
or one of the most effective lobbyists
in Washington in the last twenty years?
Grover Norquist. Grover Norquist, you know, had a pledge.
He had the Taxpayers Pledge, which he
has shopped around to all the Republican candidates,
and if you sign this Taxpayers Pledge,
you pledge a number of bullet points and you
at your peril, you violate that pledge.
So what if we had like an autism ELSI pledge
of sorts that we would ask funders and scientists to sign?
And fundamentally I want to encourage maybe
shift the thinking a little bit to thinking about
what do we do with this stuff. Because I--and
I say this only somewhat jokingly--that
the political and policy arena is pretty much
governed by the same kinds of rules that govern
much behavioral intervention.
SHATTUCK: So, you know, a good lobbyist thinks in terms
of very clearly and operationally defining the
political behaviors that they want to increase
the frequency of and the other behaviors that they want
to decrease the frequency of. And they apply a
systematic schedule of reinforcements to increase
and decrease political behaviors. And at the end of the day,
that's kind of I think where you're heading with this,
isn't it? And that I would counter your question by saying,
so what do we do next? And one way to go is to pick one
thing that you kind of put your shoulder behind
and try to promote because it's easier to focus
on one thing. But I would suggest that maybe
that one thing might be kind of a pledge of principles,
and there might be five or ten bullet points that is that one thing.
NE’EMAN: Extraordinary idea.
Who wants to agree or disagree?
UNKNOWN: It's like a poetic justice of Autistic people
using Lovaasian techniques in Washington.
NE’EMAN: So does this mean we're giving our congressmen M&Ms
and taking them away if they're bad?
DONNELLAN: Yes, and I'd like to start with Newt.
JORGENSEN: I'm going to weigh in on the easiest thing,
which is I think the one thing, is the
participation of people with autism.
NE’EMAN: Right, but--
JORGENSEN: At IRBs-- I'm sorry, was that not
the question you asked?
NE’EMAN: No, I mean it's a fair question, but I mean,
where would you start? Where would you say
the most important point is?
JORGENSEN: I think in the federal agencies
that give out money.
NE’EMAN: So the grant review panels?
NE’EMAN: Well, you know I will say, Sue Swenson
before she left--she had to catch a plane--did mention that,
and I think she gave me permission to announce this
to our audience, and if not, I'm going to be
in big trouble afterwards that she would--
DONNELLAN: Especially for the folks who are watching it on YouTube.
NE’EMAN: Oh, yes. She would be very open to hearing
from some of the self-advocates who attended today,
both amongst our participants and the audience,
about becoming grant reviewers for the
National Institute for Disability and Rehab Research.
So I encourage all of you folks to think about pursuing that.
LEWIS: And actually, and I would add--and I know
that Sue would not be upset, because Sue and I frequently
tag-team on this--for all of us in federal agencies,
finding and utilizing a diversity of peer reviewers
for grants is a constant challenge and struggle.
And, I would encourage you to--I mean, we put out
calls and solicitations for grant reviewers non-stop.
And it is difficult to find folks who have the time
and the inclination and are willing to serve in that way.
And I would encourage and support any of you who
would like to pursue that, both, you know, at the
Department of Education and at the
Administration on Developmental Disabilities.
ROBERTSON: Maybe there might be a little bit
of disagreement on this, but I think that we
could also shift maybe a little bit on how we make
the atmosphere welcoming for self-advocates and family members
to be part of the research process. I think maybe
it feels intimidating to some because it's
outside what's usual for them. And they may have
misconceptions about what it means to maybe participate
in the research process. So maybe we need to do
a better outreach to the stakeholder communities
to say this is what it involves, and
to educate them about the experience,
and maybe to have people who are self-advocates
and family members who've served in these review panels
to go out there and outreach and say this is the importance
of why you should be doing this, this is what it's like,
and here's why we would like you to serve
in future peer review.
SHATTUCK: Can I piggyback on that? So,
one innovation I would say that some of the parent-run
foundations have brought to the table,
like the Autism Science Foundation, OAR,
and others, is that they often require people--
having funding from some of these--you have to--
in addition to your sort of research proposal,
you have to submit a lay abstract and a lay proposal.
You simultaneously have to speak to both audiences.
You have to have the science in your research proposal,
but you also have to draft a document that's for
a non-science audience because they all have non-scientists
on their review panels. And I would say that in terms
of crafting the way--the requirements for grantees
or prospective grantees, that in addition to the science
they also have to translate that science in a way
that's accessible. That that will lower the bar,
the barrier for participation of non-scientists
in the review process. But also just logistically,
again, the private foundations have moved to a process
that embraces using web-based and telephone participation
technology for the grant reading process,
which makes it feasible for people who may not want
to travel to Washington or whatever
to participate in the review process.
NE’EMAN: Feel free--let me just actually say--
do one quick thing because I want to take advantage
of this momentum. Will everybody either in the audience
or at the table who is interested in becoming
a grant reviewer for NIDDR or
the Administration on Developmental Disabilities
raise your hand?
UNKNOWN: Or the NIH.
NE’EMAN: Or the NIH. Raise your hand. All right,
I'm going to ask all of you now to email
firstname.lastname@example.org with your resume or CV
and the subject line "Grant Review." And I make
no promises on behalf of our federal partners,
but we are going to pass along every single one
of those resumes to our friends at NIDDR, ADD, and NIH,
and, you know, we are going to try and build
some momentum around this.
UNKNOWN: Ari, could you send that information to [unintelligible]?
NE’EMAN: Sure. We will. And again, that's email@example.com.
We'll see if we can--we don't have the power point anymore,
but we will follow up also with an email for everybody
who registered on that. Anne, then David.
DONNELLAN: Okay. I've never before gone out on the limb,
obviously, but I'm going to do that because I may not
have this opportunity again. And I'm not sure where
to put it in our priorities, but with a lot of experience
and a lot of years behind me, I believe that what's
happening in ordinary technology, right now--
I'm talking about things like iTouch and iPad--
is going to revolutionize the lives of people who
can't speak but who have autism or similar developmental,
special needs. And I think we need to have research
both to look into those possibilities,
what's available to people, what could be made available.
There are lots of safeguards that need to be put into it.
But I am hearing from people I trust around the country
that folks are doing things independently with iPads
that we never expected. And I'm talking about people
who are very careful in what they're saying.
And I think five years from now we're going to be saying,
boy we missed a great piece, if we didn't at least look at that.
And I suggest that we put it someplace--
I'm not even sure how to word it--on our list and say,
somebody ought to be looking at this, and
somebody ought to be paying attention to
how we can learn more about it.
ROBERTSON: Just a quick thing on that. As a person--
and I'll be brief because I know you want to get to some--
NE’EMAN: I wanted David, but, you go then David.
ROBERTSON: Okay. I come originally from a technology background,
computer science, and I've had a frustration
there aren't as many other people like myself
who have an interest both from the social science
and the disability rights, et cetera, and the technology,
and can bridge that gap. So I think to make it more feasible
in terms of having more research that is not only technology,
but looking at actual focuses and how the
technology can have an impact, we need to be having
more people like myself, I think, who have both
experiences and training and background, and
have been motivated to both be connected on the technology end
and on the social science and disability rights
and disability studies, et cetera, end, and be bringing
that together. I think that's an important part
of the technology research.
ROSE: Actually that was helpful.
So I'd like to bring these two together I think.
DONNELLAN: I was hoping you would do that.
ROSE: Okay so, and make some promising things.
So first I was thinking you shot too low, Ari.
I've never heard that before, but you named
three disability organizations, and I think that
moves away from what we really need is to make sure
that individuals with autism are represented at
regular Department of Education, and regular NSF, and regular all of that.
Because otherwise we continue to ghettoize the process,
and people with disabilities are in the basement.
And I think--so I would just say exactly what you said,
except that we want to go for the--everybody's going
to be in the same education, everybody's going to learn
the same science, we need people with autism at those.
Secondly, and to what Anne said, that we could mine a little bit,
is I think it'd be good if we made the federal government,
in all of these agencies, put out their RFPs
in a universally designed way. So everyone in fact
could understand them and read them--
ROSE: And then--
UNKNOWN: Good thought!
ROSE: And then they would be a model.
NE’EMAN: Our federal partners are shaking in terror!
LEWIS: Lest I pop your bubble, I'm sitting in an office
that just got updated in the last couple months to Windows 2007.
ROSE: So I do want to say that I just met with Martha Kanter,
who, it turns out, thinks the Department needs to go in this direction,
and has asked to have another meeting about how--
and we have an authoring system that would allow you
to fairly easily make, documents universally designed.
And she realized it's crazy that the Department of Education
doesn't put out accessible documents. I'm not saying
it's going to be easy, but it might be easier than
the shift to Windows. But anyway, so the Department--
so we should get all of those departments to in fact
practice what they preach and serve as good models.
And then people wouldn't feel so ostracized,
like this isn't me because I don't even
understand these documents, which is the case.
Actually academics don't even understand them.
UNKNOWN: I'm just sitting here shaking my head.
I'm like, I could use some [unintelligible]
CRANE: Sorry, I should get this closer here.
One of the things that I'm particularly interested in
when we're talking about moving from a medical model
to a social model is that that needs to be accompanied
by a move to social psychology and a move towards
actually studying systemic interactions around
disability and around autism. There really is
a very small percentage of the population who's Autistic,
a very large percentage of the population is not Autistic,
and so in order to have real social change,
you need to sort of work on this 90--the 99% or you know,
the 90%, I don't know exactly how many people are Autistic
because this is a very divisive question, but
we really need to focus on sort of basic social psychology
in the disability context and understanding, what's going on
with everyone in a particular environment, including,
how non-Autistic people respond to Autistic people
and how they can adapt to us.
So that was what I was going to suggest.
NE’EMAN: Yeah, do you want to step up and I think there's a space for this.
SCHWARZ: I think, I think as far as the political process goes,
what that--we came to that realization I think a long while ago,
and I still think--this hasn't happened to the extent that it should,
but I still think we need to look at other marginalized communities
that have effective, but are small minorities, that have effectively
leveraged much larger ally populations in the mainstream population
outside of their own group. I think the LGBT community
is probably the poster child for that, but I think
there's a tremendous amount of work still to be done
in that regard. And that's purely the political process,
no academics anymore, but then influences how decisions
are made that ultimately send money towards funding the academics.
So I think it's important.
NE’EMAN: Does anybody amongst our participants mind
if I take this opportunity to offer some of our
audience members a chance to weigh in and--
DONNELLAN: Not at all, please.
NE’EMAN: I've got a mobile microphone, so you don't...
Who has something to say about where
this conversation should go next?
AUDIENCE MEMBER: Hi, I want to thank you for the work
that you guys are doing, but would recommend that you
have a couple of opportunities as you move towards
more of a person-centered and universal design model,
particularly when you start talking about technology.
Right now an iPad is not covered by insurance
because it is a multi-use device.
They have a very arcane definition of
what a communication device should be.
They're looking at it as a single-purpose device,
which is not inclusive, and it is not universally designed.
We want to move towards mobile technology,
something that can be customized to meet everybody's need
instead of asking people to haul a trailer full
of technologies that they would need to get through their day.
These are regulatory issues around definitions that
are really dated. So we need to develop--as you talk
about building a common language that is more inclusive
and more human-centered, there are also these regulations
that are inhibiting access. And as we get at the diversity issue,
we will--it's only going to be the majority culture
white kids who gain access to the iPads.
So we need to ensure that you have common language
that promotes inclusion, that promotes the diversity
of this country and allows access to the more basic tools
that will really distinguish our kids in the future.
The digital divide is very present in a more threatening way
as we have more language minority people moving forward
in the population. And I think that we're at real risk
if we don't get very quickly on those definitions.
UNKNOWN: That's very good, thank you.
NE’EMAN: Can we hear from Lydia?
I think earlier today her hand was popping out of her socket.
I want to make sure she gets a chance to talk.
Lydia's the person with the short hair.
I guess it's not particularly short, but.
BROWN: Okay, I guess I'm audible now. Sorry.
In regards to the--it's been mentioned a couple of
times about the fact that it's very hard to reach out
to other minority communities, especially in that people
from low income backgrounds may not have as easy access
to getting a diagnosis. And there's kind of evidence right now.
Yvonne and I are the only two non-white people in this room,
not including people who are of Latino background,
but who appear white because obviously I wouldn't know.
But there's two of us in a room of a lot of people.
That is not representative of our population.
A few moments ago, one of you mentioned something
about circulating a pledge that you would ask that
people would sign. I think, I don't remember if you
said that it would be reviewers, or if you said
that that would be the actual researchers, not the people
who are reviewing the research, signing a pledge
in regards to the way research is being done.
And I was wondering if you think it would be
a feasible goal to have something drafted
before the spring of 2012 to have some kind of
a draft out there, and, if so, if we could do that
and actually look to people who are in those review boards,
or who are doing the types of research at,
for instance, the UCEDDs, and ask them,
would you commit to signing this pledge?
Because if we have these different ideas that
you came up with during the working groups
about ways that research ought to be done,
that's not being--huh? I like that idea. I
don't know if that's feasible, but I like that
idea personally. but--what is that,
two and a half weeks? Three weeks?
NE’EMAN: So Paul. Paul, what do you think about spring--
BROWN: And circulating that to see if people would
actually sign that kind of a pledge because
that could be a huge move forward. And I think
it's totally feasible to get that out relatively quickly.
I do not remember what I was going to say earlier.
I honestly don't.
NE’EMAN: That's quite--Paul, do you think Spring 2012
is a reasonable deadline? I know ASAN would be
glad to sponsor a pledge of that nature.
SHATTUCK: Personally, I think that's too early.
So my, you know, background prior to being in autism research
is doing research in political sociology and political movements,
and I've been a political animal my whole life,
really since I was an adolescent. That if you talk
about rolling out a pledge, that's a tactic,
and it's a political tactic. As an organization,
my advice to you guys would be, if you're going to do it,
that's the kind of thing you have to roll out
with a campaign strategy that you have to
hit a home run your first time up at bat.
When you pull out a tactic like that, it can't be half-baked.
It can't be half thought-out.
You have to really have a campaign strategy
mapped out that is effective and well thought out
because you only get one shot.
You know--that's my sense about it. I might--
people might disagree with me, but I don't know. That's--
DONNELLAN: Who's being asked to sign the pledge again?
SHATTUCK: I don't know; it was just an off the cuff suggestion.
NE’EMAN: I mean, I could see us taking that to researchers
and I think--so the timing is definitely something
we might want to think about. But as an idea,
it's absolutely brilliant.
DONNELLAN: This gentleman was next, I think, in the queue.
RAJCZYK: My name is Daniel Rajczyk, and I'm an adult on the spectrum.
And I like everything that everybody said.
We're bringing up that people in the commu--
the social organizations to help with various different things
and, going off of that, I'm in the process of starting
a non-profit to help people on the spectrum with
the whole thing with employment, which is a big issue,
and the other thing I'm running into talking about
grants in general, is a lot of the grants are for children,
very little grants for adults,
just adult related organizations or anything.
And I've been running into that researching
what type of grants to even go for. And most of
the grants are children--I know, because there's
the cute factor. They're kids. But then everybody
feels that autism ends at childhood and doesn't
go into adulthood, and this needs to change this way of thinking.
And I don't know--I mean, I hope that doing my non-profit
will help with employment, the whole gamut of employment.
Also going and educating employers about the spectrum
and to agree to interview my clients, and then the point
of educating them the best working environments
for people on the spectrum. But I don't know how
to get around the whole--maybe there needs to be
a research study of how to get more resou--
or some sort of research policy in how to get around
people's thinking that it ends in childhood.
BASCOM: Is that good? Okay. I wanted to say first of all
that I understand the importance of--I think you said,
Paul, on hitting a home run on this one, in terms of campaign,
but I would really, really love to see the symposium participants,
whatever we're calling ourselves, commit to at least
having a list that we can then spend enough time crafting
into something because I think that's an amazing
opportunity that shouldn't be passed up.
And I think one of the things we should have on our list
is some language addressing the issue of grants
and just research in general across the lifespan.
I don't know if that had been mentioned as
a potential point yet. I know people brought it up,
I think in every group, or at least two out of three.
DONNELLAN: I'll put it on our list just in case it wasn't there.
NE’EMAN: Let me just say one thing real quick.
Part of the grant that we received to conduct
this symposium included as a requirement
developing a series of policy briefs analyzing different types of issues in
ethical, legal, and social implications of autism research.
And that's where we're going to be focusing a lot of
attention now that this symposium is almost completed
and seems to have been conducted successfully.
I wonder if that might help inform development
of a pledge of that nature. And I think we definitely
are going to need to involve the symposium participants
in the creation of those briefs, as well as
others in the community who are interested.
Who amongst the participants want to talk?
SHATTUCK: I would like to say--so there have been
discussions and comments and so forth about trying
to increase the amount of funding and the amount--
the quantity of research that takes place related
to both adulthood and services. And, you know, the flip side
of that challenge is that there just aren't a lot
of people who do that kind of research. And there's
a real capacity challenge on the horizon if we do want
to increase the amount of research being conducted
on services across the lifespan. There needs to be training,
there needs to be--there needs to be a training pipeline
of doctoral and post-doctoral fellows who get trained
in that kind of research. I mean, really, I can
count on one hand the number of people in the US
and the UK combined who do really kind of devote
themselves to those topics of services and adult issues
and so forth. And I mean, I've had program officers
at NIH call me up and say hey, we've got this new PA,
will you apply? Please! Please apply! They want--
I've actually gotten more inquiries and overtures
from funders in the past year than you can imagine.
But I'm just one guy. I can't possibly have
thirty different grants at once. And so I've been
hanging out a shingle trying to attract doc students
and post-docs, to no avail. I mean, I just--I can't give it away.
So there's a real capacity pipeline issue
that needs to be dealt with there.
LEWIS: And I'm curious to hear that, and I'm wondering
if the capacity pipeline perception is based in,
when you talk about that, is that specific to autism?
Because, certainly I would argue that we have, a fairly vast--
I mean, not vast in terms of science and research
across the country, relative to other topics--
but when we look at, you know, the UCEDD network
and the number of researchers that are doing research
related to services and supports for people with
intellectual and developmental disabilities writ large,
that there are a fair number of folks out there to do that.
Now do you think that the perception is based on population difference?
Or are you talking about, you know,
the social services research writ large?
SHATTUCK: I'm not sure what you're asking me, but--
LEWIS: Well, you've just indicated that there--
that there's a handful, I think was the description
that you just used in terms of number of individuals
who are well-qualified to pursue this research.
And I'm just wondering when you are--
SHATTUCK: Well maybe well-qualified and interested.
So you're saying there are people who are well-qualified.
I guess I'm just relating the fact that I've been
approached by foundation and federal funders saying that there is money.
SHATTUCK: Untapped and unasked for in terms of research on services for adults.
SHATTUCK: And I guess I maybe mis--I misunderstood.
Maybe there is more capacity and I wish that
the folks you know would step up and apply for that.
LEWIS: Well that's interesting.
NE’EMAN: So I’m committed to getting our last audience
that another--an audience member who's had
the microphone for a while and wanted to speak up.
WHITLOCK: Dave. Dave Whitlock.
NE’EMAN: And then I think we'll come back to the table.
WHITLOCK: My suggestion is to include some of these,
the things like no negative studies are published,
and you want to include the whole food chain of the autism research.
So you include the journals, the the funding agencies,
the researchers, the IRBs, the researchers,
the clinicians, and the journals. And hold
their feet to the fire and make them publish stuff
that's negative. you know, if x doesn't work,
compel them to publish. I mean that's,
I think that's what you ought to do.
NE’EMAN: Point very well taken.
Cheryl, you've had your hand up for awhile.
JORGENSEN: When you invited us all here, you said
it was a symposium on ethical, social, and legal issues
around autism research. I was wishing that more of us
as presenters had really talked about what I thought you wanted,
which is what are the core ethics and values behind
to help not only individual scientists make decisions,
but to help agencies guide their funding,
and so on. So I hope that--and I know that we won't
get to do it today--but I hope that as we put together
our final recommendations, somebody is able to take
a look at all the recommendations and see in fact
if there are three or four foundational ethical principles
because I don't know about you--and Anne, you've
been in it 41 years, I've been in it 30 years,
it's I just haven't seen changes, positive changes
in the lives of children or adults based on res--
solely on research or on systems change around policy.
It's only when people have really changed their,
or been able to articulate their, real values into a--
about people with disabilities that
the changes have happened. So I would--putting
a motion on the table that we make a commitment
to underly our policy recommendations with
some ethical statements. Values statements.
NE’EMAN: I think that could definitely be--
and we're going to transcribe everything that was
said in open session here, so we can use that
as the basis of it. I think that would definitely
be a worthwhile follow up activity.
Does that sound good to everybody here?
Any other comments from the table? Scott.
ROBERTSON: I completely agree with that--
and that's--this is one of the reasons why
we should probably have more meetings like this one to-
because there's so much ground we need to cover
that should have been covered, like, yesterday
or four years ago. But I just wanted to say briefly
that maybe it ties into a little bit about what
Paul was saying about, the--getting more people
who are both--have a motivation and a training and
a background on doing autism research on the areas
that we lay out. And some of that I wonder is if changes
should be encouraged on the incentive structure
that exists in the system across many different levels
from the funding to the researchers to the training
to what happens in grad student level. You know,
across the board, maybe a re-examination of
what incentives look in there.
And how--because that's one of the reasons that
people ultimately sometimes choose their path of research
and continue on and stay on it, is there's incentive structures
in place. And maybe we need to examine what they look like
right now and how we can help with propelling some changes
in there to get more people interested and engaged
in the work that's being done that many of us value.
NE’EMAN: So I'm going to--since we're
almost at the end of our time and I see
two hands up in the audience-- I'm going to say,
two more comments from the audience,
two more comments from the table, and then
I think we will probably be at our limit.
So the lady who has the microphone now,
and then I think Lydia has one more comment,
then we'll come back to the table and go into summation.
AUDIENC MEMBER: Well, Cheryl, I'm glad you said
what you said regarding ethical concerns.
And one of the issues that I struggle with
that has been on my mind for a long time
besides many of the ones you talked about,
there's a behavior strategy that's very popular
and only is increasing in popularity that I think
undermines the independence of children with autism
and carries into adulthood. Some of us know that
that's essentially been replaced by positive behavior supports.
No? Well, in--and, and in idea it even calls for positive behavior supports,
and yet, is it okay if I say what I'm talking about?
Applied behavior analysis. And part of the problem with it
is that it's said to cure children. And so it's a fix.
And people buy into that. And almost every child with autism
is supposed to have that. It used to be that only young children
were to receive it. Now it goes into adulthood.
Excuse me. So, if it hasn't worked yet in your early childhood years,
it means you need more. And now adult services are providing it--
LEWIS: It's a rain dance model.
LEWIS: If dance didn't work, we'll dance some more.
AUDIENCE MEMBER: Exactly. So, you just need more
till you've recovered, as some of the slides said.
And even assuming it works--and I'm sure it works for some children--
autism therapies should not be a one size fits all.
Additionally, therapies including--I always confuse
medicare and medicaid--only covers aba. So it makes it
even more of a problem because if parents want therapy
at home, the state's providing it, it's only covered--
it's only going to cover ABA. And I think that really is
an ethical problem. So thank you very much,
and thank you for this wonderful day.
BROWN: In regards to cheryl's comment again about,
the issue of core values or ethics, earlier this year
a couple of the different ASAN chapters held focus groups
for the autism now center in regards to drafting a statement
of core values and ethics. I do not--I have not seen a final document,
but I know that at least our chapter here, the New England chapter,
had our focus group in June. And we came out of it
with a statement of core values and ethics.
And because a statement of core values and ethics is
not necessarily specific to, say, one particular activity,
say a therapy or research or school, but
it's a statement of the core values and ethics with which
you approach a particular area or group of people. We feel--
I feel that that could be a good working document
to use going forward, because there is already something.
You don't have to go and remake the entire wheel
or whatever the phrase is. Yeah, reinvent it.
Reinvent. There you go.
UNKNOWN: Can you send that to Ari?
NE’EMAN: We have it.
BROWN: Yeah. It's ASAN.
NE’EMAN: Yeah. And Autism NOW has that document,
you know I don't know what exactly they're going
to decide to do with it, but we're giving some thought
to producing a stand-alone report utilizing it
and some of the other focus groups, and maybe some
of the proceedings from today's event at some point
early in the coming year. so that's definitely
a topic under discussion. I'd like to ask for
two closing participants from the table, and then
I think we are at the end of our time.
Well in that case, Michael, since I think we have
a lack of closing participants from the table,
how about you be one of our two?
WILCOX: Thank you.
NE’EMAN: You want to come to the microphone?
WILCOX: Microphone? Sure. Thank you. I'm Michael Wilcox,
I'm a member of the Massachusetts Special Commission
Relative to Autism. This has been a fascinating day
and very helpful to me in the work that we're doing.
Two of the things that struck me were--issues--were,
adult services and language. And, adult services in Massachusetts
and, what I know the rest of the world, don't exist.
And, that's an issue that we're struggling with
and trying to something about. There are adults who
do get services, but they're from programs that were
not designed for Autistic people. They're poverty programs
or whatnot, you're familiar with all this I'm sure.
So, this has been extremely helpful to me to get
a perspective here. And just the other short comment on language,
I'm a--perhaps amused, or I try to be amused rather than offended--
but there has been a lot of language, that's been used here,
which is typical of all the discussions that I've participated in,
and it seems that the self-advocacy community is pretty consistent
on the fact that we want to be known as Autistic people.
And person-first language that has been drilled into many people
for years, says that the respectful way to speak about
people with disabilities or people with autism, is that way. .
many of us don't like that, many of us prefer, as I say,
to be Autistic people or to be disabled people. This may sound
like a minor thing, but when I hear, words like spectrum,
I shudder. I don't think autism is a spectrum.
I certainly don't think autism is a disorder. We-
the, the quotation from the DD Act was wonderful.
And I complimented you on your use of the word constellation,
which I think is a much better description of what autism is.
Anyway, I'm not here to lecture or--I just wanted to observe
that this whole session was extremely useful,
intriguing, inspiring. I thank all of you
for participating in this, and I certainly feel
that I got a lot out of it. So thank you.
NE’EMAN: Thank you. And let me just say thank you
to all the members of the public who came out and joined us.
Sharon, since the Administration on Developmental Disabilities
sponsored this event, would--I'd like to invite you
to make a few closing remarks before we adjourn.
LEWIS: Well first and foremost, ADD is concerned with ensuring that--
and I apologize because I am a people-first language person--
but that people with disabilities writ large,
which includes Autistic individuals as well as
people with other intellectual and developmental disabilities,
have their voices heard. And I said that early in the day.
And I cannot think of a better example of a collaborative
and cooperative process than, what we have pursued here today.
So I thank all of you and, in particular, Ari,
for your insights and your leadership in
pulling together this symposium.
And allowing it to come together with the support
and ideas from Alan and other. So I think that
the kudos go to you. ADD's role in all of this
is minimal. And I think that we look forward to seeing
what happens from here. And that this, does allow for
continued debate and the development of the policy papers
that I think will be useful to inform the community
including policy makers, as think about priorities
and resources and policy. And the last thing I just wanted
to say on a personal note is that for those of you
in the room who don't know it, today is Ari's birthday.
So, you know, this is what you get for giving me the microphone last.
ROBERTSON: I knew it was going to eventually happen!
LEWIS: So I waited all day! I didn't say it early in the day!
So happy birthday, Ari, and I hope that you are
feeling like this is a success, and we are very appreciative
of ASAN and your memberships and all that you bring
to the public policy debate. So thank you.
NE’EMAN: Thank you, Sharon. Today was extraordinary,
best birthday gift I ever received. And let me just say,
in closing, I really have to thank all of you--
the participants, the audience members, the folks
who have been following along via the webcast and on twitter--
for making this an extraordinary success.
We're going to follow up on that grant review idea.
We look forward to getting resumes and CVs.
I've noticed we've already had a few emailed to us.
We're going to follow up with our federal partners
on that. We're going to talk with Paul and some of
the other folks here about, looking into the pledge concept.
I'm looking forward to finding out who the
disabled Grover Norquist can be. And overall we're
not going let this conversation stop. We're
not going to let this process stop. The stakes are too high.
So thank you all very much, and please
give yourself a pat on the back and a round of applause,
flapping, or your complimentary activity of choice.
Thank you very much, and have a wonderful afternoon!