Messenger photo by Dianne Garrett
Whitehall residents, from left, Shannon Dean and son Braden Harper, Abella and Chelsea Bishop, and Leslie LaCorte plan to participate in a research project on the causes of autism to be conducted in central Ohio. The children, both 4, are autistic and attend Oakstone School. Congress members David Hobson and Deborah Pryce secured the $1.5 million in funding for the project.
Local families will receive some additional hope in dealing with autism, thanks to funding earmarked by Congress for research.
Nationwide Children’s Hospital in Columbus, Dayton Children’s Hospital and Wright-Patterson Air Force Base will join forces in a unique collaboration to help unlock some of the mysteries of autism through $1.5 million in federal funding secured by Congress members David Hobson and Deborah Pryce.
Funding for the research program was included in the fiscal year 2008 Department of Defense appropriations bill, which was signed into law by President Bush last month.
"This autism research project is another example of how seed money can be used to help further medical advancements in childhood diseases and disorders," Hobson said. "With this funding, we are bringing together three first-class institutes to help researchers learn more about the causes and treatment of autism, and are providing participating WPAFB families with the expanded therapies that they need."
Pryce noted that the research derived from the study could yield tremendous breakthroughs in how medical professionals treat and diagnose the disorder.
The research involves the development of a comprehensive registry of central Ohio residents and families at the air force base dealing with Autism Spectrum Disorders, in order to provide higher quality data for genetic research and therapies and treatment services for participating families.
As an Exceptional Family Member Base, Wright-Patterson is one of the few military bases where an evaluation for autism and its long-term management can be performed.
Under the program, service members are assigned to bases offering suitable medical, educational, or other resources to treat family members with medical conditions requiring prolonged hospitalization or outpatient treatment.
The registry and gene mapping research will be conducted at the Research Institute at Nationwide Children’s Hospital in Columbus, while the autism therapies and treatments involving participating Wright-Patterson families will take place at Dayton Children’s Hospital.
Dr. Gail Herman, director of the Center for Molecular and Human Genetics at the Research Institute, will be the lead researcher.
According to Herman, autism affects one in every 150 to 160 children. It is characterized by varying degrees of impairment in communication skills, social interactions and restricted, repetitive and stereotyped patterns of behavior. Autism spectrum disorders include its most severe form, autistic developmental disorder.
"The planned research will play a part in the international research community’s efforts to understand the causes of autism, and we want Ohio families to be involved in this effort," Herman explained.
Herman said the registry for this new research program began about 18 months ago. The registry will provide opportunities for families to participate in local and national research studies examining the causes, diagnosis, and treatment of autism spectrum disorders.
As part of this study they will collect and store medical information and blood samples on individuals with the disorders and their family members.
She shared that parents try to blame themselves for the onset, but autism actually happens almost immediately after conception. It can sometimes come from both parents.
In the latest research, over 1,000 families were studied. There are 10 to 100 genes involved in autism, in different combinations, making it hard to find the genes responsible.
How will this affect local families?
In Whitehall, there are 16 identified autistic children. Four are being served locally at C. Ray Williams Pre-School in a special education class, and 12 are at other facilities.
Two life-long Whitehall residents deal with the disability every day.
Leslie LaCorte, a Whitehall City Councilwoman, and Shannon Dean are thrilled at the news about the appropriation.
Shannon’s son, Braden, and LaCorte’s granddaughter, Abella Bishop, are both 4, and are in the same class at Oakstone School, where Shannon is also a teacher. Braden is the son of Chelsea LaCorte Bishop. Braden was diagnosed at about 18 months, and Abella was just over 2 when she was identified as being autistic.
When their parents noticed that the children were not starting to talk, making sounds, or communicating their wants and needs, and throwing tantrums out of frustration, it was obvious there was a problem. They received their diagnoses through speech therapy and testing.
Shannon Dean was attending college to become a teacher when she became pregnant. She received her teaching certificate, and shortly after her son’s diagnosis, decided she wanted to teach autistic children. She is now working on her master’s degree and teaching at Oakstone, and has been there for two years. She also teaches autistic children to dance.
All three women are planning to participate any way they can in the research project.
They wanted it made clear that there is a huge misconception about the disability and it does not mean the children are mentally retarded. A small percentage are, but autism is behavior-based. Their brains make them see life from a different perspective.
LaCorte shared how Abella used to often wake up in the middle of the night, and she had to get up and stay up for as long as the child wanted.
"When their brains turns on, they are ready to go, and we have to just go with it," LaCorte said. "They can’t turn the emotions off and on like we can."
Dean said Braden would wake up with screaming fits. They can’t put the children down for even a 20-minute nap during the day because they will then be up during the night.
They praised Oakstone, which is located on Cleveland Avenue. There is a pre-school, K-5, middle school and a high school that combines students with autism along with those who do not have the disorder.
Bishop said that she had Abella in the C. Ray Center before Oakstone to help her earn how to interact.
LaCorte leaves her job every day to have lunch with Abella. She pointed out that they have trouble figuring out how to open their drinks or food wraps, so she goes to help every day.
Dean has nine students with two adult assistants at Oakstone. When she heads home at the end of her work day, her work does not end. She picks up her son, and they have a daily routine to follow. Autistic children need to maintain consistency, and have a special place that is their learning place at home where they are comfortable.
Braden’s space is his room, where photos of his friends surround him, along with his desk and toys.
Abella’s place is in her bathroom. She likes to sit in the tub and see pictures of her friends on the wall.
It is important to try to get them to bed on time, as well, the caregivers explained.
Braden goes to bed at 8:30 but his mother’s day is still not finished. She then works on her classroom materials for the next day. That often takes another three hours.
"If he has a bad day, and for some reason I can’t get him to settle down for bed until midnight, then I’m still up after that to finish my school preparations," Dean said. "Parents can become very overwhelmed and stressed out."
Caring for these children has to be a team effort with all family members involved, the women agreed.
LaCorte said that it is hard to get a break, and that is why help by family members and a support system is crucial.
"You can’t take your eyes off of them for one minute. It’s very exhausting," she said.
It was the general consensus that no one understands autism better than a parent. Every day is different, and they must be hands-on constantly. They cannot keep themselves entertained like other children.
Braden and Abella have made huge strides. They both love school, learning and being with their peers. Abella’s birthday is Dec. 5, and this was the first year that she seemed to really understand what her birthday was all about.
Dean and her family are looking forward to Christmas, because for them, this is the first year that Braden understands what the holidays are about. All said they feel blessed by this breakthrough.
The toddlers have expanded their vocabularies, and are easier to communicate with, but that does not mean life is easier for the families or the children.
Seizures are common with autistic children. Bishop said that Abella has been fortunate to have never suffered from this. Dean said that Braden has little spells where he shakes on occasion, but he has never had seizures. His bouts of shaking are happening less often.
It is sometimes difficult when the children have one of their tantrums in public. Others around them don’t understand, and the parents are busy dealing with the situation, so there is not really time to try to explain to others what is happening. People will make unkind comments and even though the families learn to look past it, it is still hurtful.
They said that they would appreciate if people would stop before they speak when they don’t really know what is happening.
How to participate
To participate in the research program, a child must have a formal diagnosis of an Autistic Spectrum Disorder and have had basic genetic testing.
Participants must be willing to give consent for parents and child, provide information about medical and family history and/or give permission to obtain medical records.
The child and both biological parents (if available) must also agree to donate a small amount of blood, and may be asked to complete one or more psychological tests.
The goal is to have about 250 families for a total of about 1,250 participants. There is no cost involved.
The research study is being led by Herman. Other doctors, clinicians and scientists will be involved in the study from Nationwide and Wright-Patterson’s hospital.
Those interested in being a part of the study can contact coordinator Elizabeth Varga at 355-3607 or 1-800-792-8401, or by email at Elizabeth.Varga@Nationwidechildrens.org.