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