I’m gonna start by telling you a story a story about two little boys who are not
story about two little boys who are not
story about two little boys who are not related to each other but both have
related to each other but both have
related to each other but both have autism this first little boy would be
autism this first little boy would be
autism this first little boy would be diagnosed with autism at a Children’s
diagnosed with autism at a Children’s
diagnosed with autism at a Children’s Hospital about five miles from his home
Hospital about five miles from his home
Hospital about five miles from his home and the other little boy would have to
and the other little boy would have to
and the other little boy would have to endure a five hour drive to a Children’s
endure a five hour drive to a Children’s
endure a five hour drive to a Children’s Hospital for that same diagnosis both of
Hospital for that same diagnosis both of
Hospital for that same diagnosis both of these little boys have parents with
these little boys have parents with
these little boys have parents with nagging feelings that something wasn’t
nagging feelings that something wasn’t
nagging feelings that something wasn’t quite right with their son’s behavior
quite right with their son’s behavior
quite right with their son’s behavior vacant stares missed developmental
vacant stares missed developmental
vacant stares missed developmental milestones no hyzer bias no Mama’s or
milestones no hyzer bias no Mama’s or
milestones no hyzer bias no Mama’s or daddies and the first little boy would
daddies and the first little boy would
daddies and the first little boy would come back with that diagnosis and
come back with that diagnosis and
come back with that diagnosis and receive years of in-home speech and
receive years of in-home speech and
receive years of in-home speech and occupational therapy and the other
occupational therapy and the other
occupational therapy and the other little boy would have to wait until he
little boy would have to wait until he
little boy would have to wait until he entered public preschool for those same
entered public preschool for those same
entered public preschool for those same services but let’s back up a moment make
services but let’s back up a moment make
services but let’s back up a moment make sure we’re on the same page when you
sure we’re on the same page when you
sure we’re on the same page when you hear the word autism my guess is that
hear the word autism my guess is that
hear the word autism my guess is that you don’t need me to tell you very much
you don’t need me to tell you very much
you don’t need me to tell you very much about autism that your life is probably
about autism that your life is probably
about autism that your life is probably in some way already been affected by
in some way already been affected by
in some way already been affected by autism maybe you have a friend with a
autism maybe you have a friend with a
autism maybe you have a friend with a son or a daughter maybe you have a
son or a daughter maybe you have a
son or a daughter maybe you have a classmate with autism and at the very
classmate with autism and at the very
classmate with autism and at the very least if you’re 40 and over you’ve
least if you’re 40 and over you’ve
least if you’re 40 and over you’ve probably seen the movie Rain Man where
probably seen the movie Rain Man where
probably seen the movie Rain Man where most of us heard the word autism for the
most of us heard the word autism for the
most of us heard the word autism for the first time so this is not news anymore
first time so this is not news anymore
first time so this is not news anymore we’ve heard about the increased rate of
we’ve heard about the increased rate of
we’ve heard about the increased rate of autism now one in 68 children the
autism now one in 68 children the
autism now one in 68 children the controversy over vaccines the call for
controversy over vaccines the call for
controversy over vaccines the call for more research may be the changing
more research may be the changing
more research may be the changing criteria for diagnosing autism so we’ve
criteria for diagnosing autism so we’ve
criteria for diagnosing autism so we’ve become more educated and on the surface
become more educated and on the surface
become more educated and on the surface we know a couple things
we know a couple things
we know a couple things one that autism is a spectrum disorder
one that autism is a spectrum disorder
one that autism is a spectrum disorder meaning there are some with
meaning there are some with
meaning there are some with high-functioning forms of autism and
high-functioning forms of autism and
high-functioning forms of autism and others with a more severe form of the
others with a more severe form of the
others with a more severe form of the disability usually marked by someone
disability usually marked by someone
disability usually marked by someone with an intellectual disability or maybe
with an intellectual disability or maybe
with an intellectual disability or maybe someone who’s completely nonverbal and
someone who’s completely nonverbal and
someone who’s completely nonverbal and that was in that spectrum there are
that was in that spectrum there are
that was in that spectrum there are varying degrees of difficulty associated
varying degrees of difficulty associated
varying degrees of difficulty associated with three characteristics
with three characteristics
with three characteristics of autism social interaction
of autism social interaction
of autism social interaction communication and repetitive behaviors
communication and repetitive behaviors
communication and repetitive behaviors and then it goes from there there are
and then it goes from there there are
and then it goes from there there are lots of concepts and nuanced vocabulary
lots of concepts and nuanced vocabulary
lots of concepts and nuanced vocabulary words associated with autism stemming
words associated with autism stemming
words associated with autism stemming idiosyncratic language echoed laelia
idiosyncratic language echoed laelia
idiosyncratic language echoed laelia sensory defensiveness this list goes on
sensory defensiveness this list goes on
sensory defensiveness this list goes on and on and most of us come to know these
and on and most of us come to know these
and on and most of us come to know these words and what they mean on a
words and what they mean on a
words and what they mean on a need-to-know basis so set that aside for
need-to-know basis so set that aside for
need-to-know basis so set that aside for just a second and I’m gonna ask you to
just a second and I’m gonna ask you to
just a second and I’m gonna ask you to think about another concept you also
think about another concept you also
think about another concept you also know a lot about and that’s rural by the
know a lot about and that’s rural by the
know a lot about and that’s rural by the very nature that you’re here tonight in
very nature that you’re here tonight in
very nature that you’re here tonight in South West Virginia in the foothills of
South West Virginia in the foothills of
South West Virginia in the foothills of Appalachia you can at least call to mind
Appalachia you can at least call to mind
Appalachia you can at least call to mind these bucolic and agrarian images that
these bucolic and agrarian images that
these bucolic and agrarian images that most of us associate with the word rural
most of us associate with the word rural
most of us associate with the word rural and like autism there are three defining
and like autism there are three defining
and like autism there are three defining characteristics about rural and the
characteristics about rural and the
characteristics about rural and the first is geographic isolation where that
first is geographic isolation where that
first is geographic isolation where that rural community is located in relation
rural community is located in relation
rural community is located in relation to a suburban or urban area the second
to a suburban or urban area the second
to a suburban or urban area the second is population density how many people
is population density how many people
is population density how many people live in that rural community so you have
live in that rural community so you have
live in that rural community so you have places that are considered rural remote
places that are considered rural remote
places that are considered rural remote that are far away and have fewer than
that are far away and have fewer than
that are far away and have fewer than 2,500 people and then you have places
2,500 people and then you have places
2,500 people and then you have places that are considered rural fringe areas
that are considered rural fringe areas
that are considered rural fringe areas so rural communities let’s say outside
so rural communities let’s say outside
so rural communities let’s say outside of Roanoke that might have as many as
of Roanoke that might have as many as
of Roanoke that might have as many as 25,000 so like autism there’s a spectrum
25,000 so like autism there’s a spectrum
25,000 so like autism there’s a spectrum for understanding what rural is and we
for understanding what rural is and we
for understanding what rural is and we know some things about rural communities
know some things about rural communities
know some things about rural communities the decline of the family farm over the
the decline of the family farm over the
the decline of the family farm over the last several decades a shift from goods
last several decades a shift from goods
last several decades a shift from goods to services that has resulted in more
to services that has resulted in more
to services that has resulted in more part-time wages and fewer benefits for
part-time wages and fewer benefits for
part-time wages and fewer benefits for families we know that people struggle in
families we know that people struggle in
families we know that people struggle in rural areas and so now what I want you
rural areas and so now what I want you
rural areas and so now what I want you to do is put those two ideas together
to do is put those two ideas together
to do is put those two ideas together and maybe that’s something that you
and maybe that’s something that you
and maybe that’s something that you haven’t thought about before what autism
haven’t thought about before what autism
haven’t thought about before what autism looks like in a rural community in a
looks like in a rural community in a
looks like in a rural community in a rural community that might be
rural community that might be
rural community that might be geographically isolated that might be so
geographically isolated that might be so
geographically isolated that might be so sparsely populated that they lack human
sparsely populated that they lack human
sparsely populated that they lack human resources to provide diagnosis and
resources to provide diagnosis and
resources to provide diagnosis and interventions so why do we lack a schema
interventions so why do we lack a schema
interventions so why do we lack a schema for understanding what rural autism
for understanding what rural autism
for understanding what rural autism might look
might look
might look like maybe rural is simply out of sight
like maybe rural is simply out of sight
like maybe rural is simply out of sight and out of mind so that we don’t ask
and out of mind so that we don’t ask
and out of mind so that we don’t ask questions about students with autism who
questions about students with autism who
questions about students with autism who might be living below the poverty line
might be living below the poverty line
might be living below the poverty line who might be on free and reduced lunch
who might be on free and reduced lunch
who might be on free and reduced lunch who might be in a community that is
who might be in a community that is
who might be in a community that is completely lacking internet access or
completely lacking internet access or
completely lacking internet access or with parents who have never been outside
with parents who have never been outside
with parents who have never been outside of that rural community because that
of that rural community because that
of that rural community because that third criteria of rural is poverty so
third criteria of rural is poverty so
third criteria of rural is poverty so not all rural communities but far too
not all rural communities but far too
not all rural communities but far too many are areas of economic depression so
many are areas of economic depression so
many are areas of economic depression so I care about this because I am born and
I care about this because I am born and
I care about this because I am born and bred country I grew up in a
bred country I grew up in a
bred country I grew up in a one-stoplight town surrounded by the
one-stoplight town surrounded by the
one-stoplight town surrounded by the Blue Ridge Mountains these are some
Blue Ridge Mountains these are some
Blue Ridge Mountains these are some images of my great grandparents and
images of my great grandparents and
images of my great grandparents and there I am at a chicken barbecue
there I am at a chicken barbecue
there I am at a chicken barbecue my cousin Bubba in the background so
my cousin Bubba in the background so
my cousin Bubba in the background so rural is a place that I care a lot about
rural is a place that I care a lot about
rural is a place that I care a lot about it’s a deeply engrained value but when I
it’s a deeply engrained value but when I
it’s a deeply engrained value but when I love this rural community I was called a
love this rural community I was called a
love this rural community I was called a redneck I was told that I talked funny
redneck I was told that I talked funny
redneck I was told that I talked funny that there are no Z’s and greasy and
that there are no Z’s and greasy and
that there are no Z’s and greasy and that polecats are just skunks everywhere
that polecats are just skunks everywhere
that polecats are just skunks everywhere else in fact I was in college when I saw
else in fact I was in college when I saw
else in fact I was in college when I saw venison on the menu and I asked a server
venison on the menu and I asked a server
venison on the menu and I asked a server what that was and found out that deer
what that was and found out that deer
what that was and found out that deer meat had this really sophisticated name
meat had this really sophisticated name
meat had this really sophisticated name out here in the world so because of my
out here in the world so because of my
out here in the world so because of my experiences I know that Worrell can be
experiences I know that Worrell can be
experiences I know that Worrell can be misunderstood or ignored or worship
misunderstood or ignored or worship
misunderstood or ignored or worship belittled and made fun of so I don’t
belittled and made fun of so I don’t
belittled and made fun of so I don’t have rose-colored glasses when it comes
have rose-colored glasses when it comes
have rose-colored glasses when it comes to looking at the challenges in rural
to looking at the challenges in rural
to looking at the challenges in rural areas and in the other topic that I’m
areas and in the other topic that I’m
areas and in the other topic that I’m really concerned about with autism that
really concerned about with autism that
really concerned about with autism that world opened up to me in October of 2008
world opened up to me in October of 2008
world opened up to me in October of 2008 when my son was diagnosed with autism
when my son was diagnosed with autism
when my son was diagnosed with autism spectrum disorder he’s the little boy at
spectrum disorder he’s the little boy at
spectrum disorder he’s the little boy at the beginning of this talk the one who
the beginning of this talk the one who
the beginning of this talk the one who was diagnosed just five miles from his
was diagnosed just five miles from his
was diagnosed just five miles from his home classic textbook autism is what the
home classic textbook autism is what the
home classic textbook autism is what the developmental pediatrician told us and
developmental pediatrician told us and
developmental pediatrician told us and after several hours of evaluations and
after several hours of evaluations and
after several hours of evaluations and assessments we took home very scared and
assessments we took home very scared and
assessments we took home very scared and nonverbal little boy with a lot of
nonverbal little boy with a lot of
nonverbal little boy with a lot of booklets pamphlets instructional
booklets pamphlets instructional
booklets pamphlets instructional booklets about what to do now that you
booklets about what to do now that you
booklets about what to do now that you have this diagnosis and let me tell you
have this diagnosis and let me tell you
have this diagnosis and let me tell you waiting for that diagnosis is like
waiting for that diagnosis is like
waiting for that diagnosis is like waiting for a storm that’s been
waiting for a storm that’s been
waiting for a storm that’s been forecasted for days and days you take
forecasted for days and days you take
forecasted for days and days you take all of the precautions needed but you’re
all of the precautions needed but you’re
all of the precautions needed but you’re still not prepared when that word hits
still not prepared when that word hits
still not prepared when that word hits because autism can rock your world
because autism can rock your world
because autism can rock your world and just thinking back to those days
and just thinking back to those days
and just thinking back to those days there’s still some of the very toughest
there’s still some of the very toughest
there’s still some of the very toughest of my life the fear and grief of not
of my life the fear and grief of not
of my life the fear and grief of not knowing what the future might look like
knowing what the future might look like
knowing what the future might look like for your child it’s terrifying so in the
for your child it’s terrifying so in the
for your child it’s terrifying so in the last eight years have had to become an
last eight years have had to become an
last eight years have had to become an expert on a lot of those big autism
expert on a lot of those big autism
expert on a lot of those big autism vocabulary words floor Tom and ABA
vocabulary words floor Tom and ABA
vocabulary words floor Tom and ABA therapies speech and occupational
therapies speech and occupational
therapies speech and occupational therapy special education and IEP
therapy special education and IEP
therapy special education and IEP meetings all the while trying to figure
meetings all the while trying to figure
meetings all the while trying to figure out how I could get my son to endure a
out how I could get my son to endure a
out how I could get my son to endure a haircut how we could walk into a grocery
haircut how we could walk into a grocery
haircut how we could walk into a grocery store without him having a meltdown how
store without him having a meltdown how
store without him having a meltdown how he could attend school or go to school
he could attend school or go to school
he could attend school or go to school on a bus or sleep at night which seemed
on a bus or sleep at night which seemed
on a bus or sleep at night which seemed impossible and as I begged every day to
impossible and as I begged every day to
impossible and as I begged every day to learn to say I love you mommy
learn to say I love you mommy
learn to say I love you mommy so that was an all-consuming experience
so that was an all-consuming experience
so that was an all-consuming experience and for as fantastic as it was it’s
and for as fantastic as it was it’s
and for as fantastic as it was it’s really quite common for autism parents
really quite common for autism parents
really quite common for autism parents that education and grief and fear the
that education and grief and fear the
that education and grief and fear the scrambling for resources so I think
scrambling for resources so I think
scrambling for resources so I think about how much harder that must be for
about how much harder that must be for
about how much harder that must be for someone who has no access to the answers
someone who has no access to the answers
someone who has no access to the answers so I come to you tonight as a rural
so I come to you tonight as a rural
so I come to you tonight as a rural scholar on one hand and as a mom an
scholar on one hand and as a mom an
scholar on one hand and as a mom an advocate on the other and I know that
advocate on the other and I know that
advocate on the other and I know that I’m terribly flawed with bias in this
I’m terribly flawed with bias in this
I’m terribly flawed with bias in this area but here’s what I do know that
area but here’s what I do know that
area but here’s what I do know that living in a rural community doesn’t mean
living in a rural community doesn’t mean
living in a rural community doesn’t mean that you love your child with autism any
that you love your child with autism any
that you love your child with autism any less living in rural poverty doesn’t
less living in rural poverty doesn’t
less living in rural poverty doesn’t mean that you don’t want to advocate for
mean that you don’t want to advocate for
mean that you don’t want to advocate for your child with autism but it might mean
your child with autism but it might mean
your child with autism but it might mean that you lack the know-how or the
that you lack the know-how or the
that you lack the know-how or the expertise and the ways that you can do
expertise and the ways that you can do
expertise and the ways that you can do that effectively so I’ve been doing a
that effectively so I’ve been doing a
that effectively so I’ve been doing a lot of research in this area working in
lot of research in this area working in
lot of research in this area working in remote rural communities to find out
remote rural communities to find out
remote rural communities to find out what are the experiences for the people
what are the experiences for the people
what are the experiences for the people living there
living there
living there and I met a woman who told me about
and I met a woman who told me about
and I met a woman who told me about giving her son that diagnosis and that’s
giving her son that diagnosis and that’s
giving her son that diagnosis and that’s the other little boy in this opening
the other little boy in this opening
the other little boy in this opening talk and she told me that that was a
talk and she told me that that was a
talk and she told me that that was a five hour drive in one direction to the
five hour drive in one direction to the
five hour drive in one direction to the closest hospital and that she too came
closest hospital and that she too came
closest hospital and that she too came home with all of those instructional
home with all of those instructional
home with all of those instructional booklets and pamphlets and then what she
booklets and pamphlets and then what she
booklets and pamphlets and then what she said that in her rural community there
said that in her rural community there
said that in her rural community there were no resources for her and other
were no resources for her and other
were no resources for her and other parents had similar stories and they
parents had similar stories and they
parents had similar stories and they talked about how the schools were their
talked about how the schools were their
talked about how the schools were their only resource these were the realities
only resource these were the realities
only resource these were the realities that these people described to me and
that these people described to me and
that these people described to me and yet when I talked to the general
yet when I talked to the general
yet when I talked to the general education and special education teachers
education and special education teachers
education and special education teachers they explained that the schools were
they explained that the schools were
they explained that the schools were really ill-equipped to deal with the
really ill-equipped to deal with the
really ill-equipped to deal with the unique needs of children with autism
unique needs of children with autism
unique needs of children with autism outside of their special education
outside of their special education
outside of their special education setting I spoke to a principal who
setting I spoke to a principal who
setting I spoke to a principal who explained that rural schools often
explained that rural schools often
explained that rural schools often lacked funding to provide the needed
lacked funding to provide the needed
lacked funding to provide the needed professional development to those
professional development to those
professional development to those general education teachers and still
general education teachers and still
general education teachers and still other people told me about the complete
other people told me about the complete
other people told me about the complete lack of Internet access and that only
lack of Internet access and that only
lack of Internet access and that only those who could afford a $60 a month
those who could afford a $60 a month
those who could afford a $60 a month bill who had could get phone service a
bill who had could get phone service a
bill who had could get phone service a 3G service which was spotty at best so
3G service which was spotty at best so
3G service which was spotty at best so now what it’s not enough just to tell
now what it’s not enough just to tell
now what it’s not enough just to tell you about this challenge tonight is all
you about this challenge tonight is all
you about this challenge tonight is all about spark and creativity and interest
about spark and creativity and interest
about spark and creativity and interest and maybe brainstorming some solutions
and maybe brainstorming some solutions
and maybe brainstorming some solutions around these problems so at the Virginia
around these problems so at the Virginia
around these problems so at the Virginia Tech Center for autism research we’re
Tech Center for autism research we’re
Tech Center for autism research we’re spending a lot of time thinking about
spending a lot of time thinking about
spending a lot of time thinking about how we might be a center of excellence
how we might be a center of excellence
how we might be a center of excellence in dealing with the unique challenges of
in dealing with the unique challenges of
in dealing with the unique challenges of autism in rural areas particularly here
autism in rural areas particularly here
autism in rural areas particularly here in Appalachia we are right now applying
in Appalachia we are right now applying
in Appalachia we are right now applying for a grant that would allow us to go
for a grant that would allow us to go
for a grant that would allow us to go into the most remote rural regions to
into the most remote rural regions to
into the most remote rural regions to assess the barriers and facilitators for
assess the barriers and facilitators for
assess the barriers and facilitators for early diagnosis and the related services
early diagnosis and the related services
early diagnosis and the related services and maybe to develop some place-based
and maybe to develop some place-based
and maybe to develop some place-based services that would meet the unique
services that would meet the unique
services that would meet the unique needs of the people living there we’ve
needs of the people living there we’ve
needs of the people living there we’ve started the safe program the supporting
started the safe program the supporting
started the safe program the supporting autism friendly environments which is a
autism friendly environments which is a
autism friendly environments which is a community based program right here in
community based program right here in
community based program right here in the New River Valley that’s to increase
the New River Valley that’s to increase
the New River Valley that’s to increase access and inclusion for individuals
access and inclusion for individuals
access and inclusion for individuals with autism we’re also working on a
with autism we’re also working on a
with autism we’re also working on a mobile autism unit so imagine an RV that
mobile autism unit so imagine an RV that
mobile autism unit so imagine an RV that would drive into rural areas to provide
would drive into rural areas to provide
would drive into rural areas to provide those families with access that they’re
those families with access that they’re
those families with access that they’re now missing
now missing
now missing I’m not for sure what we can do but I
I’m not for sure what we can do but I
I’m not for sure what we can do but I know that we have to do more my son now
know that we have to do more my son now
know that we have to do more my son now tells me every night that he loves me he
tells me every night that he loves me he
tells me every night that he loves me he rides to school on the big bus and he
rides to school on the big bus and he
rides to school on the big bus and he sleeps like an angel at night I’m so
sleeps like an angel at night I’m so
sleeps like an angel at night I’m so grateful for that I know that we can’t
grateful for that I know that we can’t
grateful for that I know that we can’t necessarily build Hospital in the
necessarily build Hospital in the
necessarily build Hospital in the hospitals in these rural areas I know
hospitals in these rural areas I know
hospitals in these rural areas I know that we can’t necessarily throw money at
that we can’t necessarily throw money at
that we can’t necessarily throw money at problems at schools but we can do a
problems at schools but we can do a
problems at schools but we can do a better job advocating for unseen
better job advocating for unseen
better job advocating for unseen communities we can develop a place
communities we can develop a place
communities we can develop a place framework and our conversations about
framework and our conversations about
framework and our conversations about rural and about autism thinking of ways
rural and about autism thinking of ways
rural and about autism thinking of ways we can develop place-based
we can develop place-based
we can develop place-based interventions how we might leverage
interventions how we might leverage
interventions how we might leverage access advocate for those unseen
access advocate for those unseen
access advocate for those unseen communities and communicate in ways with
communities and communicate in ways with
communities and communicate in ways with rural communities that don’t overly rely
rural communities that don’t overly rely
rural communities that don’t overly rely on the internet and finally educate
on the internet and finally educate
on the internet and finally educate others about these realities these
others about these realities these
others about these realities these special considerations because I know
special considerations because I know
special considerations because I know that those folks in rural communities
that those folks in rural communities
that those folks in rural communities it’s not enough to just have this
it’s not enough to just have this
it’s not enough to just have this Pollyanna view and to say it’s okay that
Pollyanna view and to say it’s okay that
Pollyanna view and to say it’s okay that they’re marginalized in ways that others
they’re marginalized in ways that others
they’re marginalized in ways that others aren’t those early interventions are
aren’t those early interventions are
aren’t those early interventions are critical they make all the difference in
critical they make all the difference in
critical they make all the difference in someone’s life and I know that those
someone’s life and I know that those
someone’s life and I know that those parents and those remote rural
parents and those remote rural
parents and those remote rural communities want just as much for their
communities want just as much for their
communities want just as much for their children as I want for mine thank you
children as I want for mine thank you
children as I want for mine thank you [Applause]
”
Be First to Comment