Sally Burton-Hoyle was 14 when her brother was diagnosed
with autism in 1967.
Burton-Hoyle's parents each found ways to cope with the
diagnosis — her father used humor, her mother built lots
of structure into her son's days.
 |
TINY BUBBLES: Gretchen Reeves,
an associate
professor in EMU's
School of Health Sciences, blows
soap bubbles during an exercise
with an autistic
child. Reeves and
Sally Burton-Hoyle, an EMU
professor
of special education, are
working on various fronts
to
better understand autism and
how to help families
with autistic
children cope. |
But having a member with a disability takes a toll on
the whole family. Burton-Hoyle, an Eastern Michigan University
assistant professor in special education, remembers all
too well the emotional cycle each time a new professional
claimed they could cure her brother. First there was hope;
then disappointment when it didn't work; and then blaming
when the "expert" suggested her family must not have done
what was prescribed.
That's still happening, Burton-Hoyle said.
As a past director of the Autism Society of Michigan,
she heard the same heartbreaking story from many families
before coming to EMU a year ago.
Along with other EMU faculty and local agencies, she's
working to build support for those touched by autism into
a system that sometimes falls far short.
"What I try to impress on students is that there
shouldn't be any, 'The family needs to be this way' or
'The family needs to do this.'" said Burton-Hoyle, who's
collecting information from 300 families (so far, 50 from
Michigan) of autistic children around the country under
a Provost's New Faculty Research Grant. "There
needs to be a respect and understanding of that family.
Every family does the very best job they can. What we want
to draw from this is to identify ways that families cope,
and (determine), based on what they do to cope, what we
need to do to support them."
Along with Gretchen
Reeves, an associate professor in EMU's School of Health
Sciences, Burton-Hoyle teaches an autism-related online
course as part of the statewide Autism Collaborative Education
Project. Starting in January 2008, EMU will offer a master's
degree in autism spectrum disorder.
In 1967, two in every 10,000 children were diagnosed with
autism. Today, doctors have a much broader understanding
of the disorder and diagnose autism in 1 in every 150 children.
The level of services to support autistic people and their
families has yet to catch up with the frequency of the
diagnosis, Reeves and Burton-Hoyle said.
The two professors also are part of a collaborative project
with St. Joseph Mercy Hospital aimed at helping people
with autism get the care they need throughout their lives.
The project touches areas of healthcare that range from
occupational therapy and speech pathology to dietetics.
The collaborative, which is still in the planning stage,
also would connect family members with counseling and support.
Autism takes many forms and spans a range of functional
ability. In the classic understanding of the disorder,
a person might not talk at all or might have very few language
skills. Most people with autism are diagnosed when they're
around 2-3 years old and their parents notice they haven't
started to talk. But language isn't the only determining
factor. A person with autism might also be articulate and
highly intellectual, but have no grasp of body language
or social skills.
An autistic child might also be less likely to make eye
contact or to point to draw someone's attention to something.
They also can have unusual sensory reactions, such as not
responding to their name, but reacting strongly to loud,
sudden noises.
"There's a real push to be able to identify it even earlier
(than 2-3) because we know early intervention is important," Reeves
said. "It can make a huge difference in the long-term outcome."
Teachers, Burton-Hoyle said, have the power to make a
real difference for an autistic child and their family.
Those that "get it" will take information from the parents
and incorporate it into the way the child is taught in
the classroom. Those that don't may imply that the parents
are trying to get special assistance for something the
teacher doesn't recognize as autism.
"We want our teachers to understand how to support families," Burton-Hoyle
said. "But, first and foremost, we want them to understand
how to support the person with autism. And it's never too
early and never too late to begin that support."
