United Way: Byram works for those with autism
According to the Centers for Disease Control and Prevention, autism spectrum disorder has been identified in one out of 68 children. While the condition is five times more common in boys, it does not follow any racial, ethnic or socioeconomic lines. Additionally, ASD comes with a host of other challenges. The families of these children have the additional burden of isolation caused by a lack of understanding and financial barriers that at times seem insurmountable. If the devastation of a diagnosis of ASD is not enough, 32 percent of children with autism also battle challenges associated with obesity.
Susan Byram, executive director of Autism Pensacola, works tirelessly to meet the needs of the children and families who struggle with the disorder. As part of National Autism Awareness Day earlier this month, she and volunteers painted the 17th Avenue railroad trestle as a way to grow awareness of the challenges of autism. The message is as simple as the disorder is complex. Children and adults with ASD aren’t rude or uncaring, they are burdened by a medical disorder that causes them to see and hear the world differently.
Throughout the year, Byram and local volunteers work to spread awareness through fundraisers such as Steps for Autism and an awareness campaign called Autism: A Different Kind of Different. She can always use more help spreading this message and supporting activities available for families whose children have ASD. United Way of Escambia County donors support the local Kids for Camp initiative with scholarships for children and families attending the camp. Created in 2003 by Judy Burns, the mother of a son with autism, parents and educators learn how to interact with and incentivize these special children during the summer months. Using applied behavior analysis, they create an environment that is tailored to a camper’s individual needs related to community and classroom settings. These lessons carry through to the school year and create ongoing impacts that enable children to integrate successfully into normal school and social settings.
Considering the financial burden upon families whose children have been diagnosed with ASD, scholarships for the camp are especially important. Raising a child with Autism is estimated to increase the annual cost to families by $17,000 in medical expenses and $40,000 to $60,000 in intensive behavior interventions. In 30 percent of their evaluations, children with ASD also have an intellectual disability. Believe it or not, this is good news as that percentage was previously estimated to be at 50 percent. Misdiagnosis grew from the discomfort that those with ASD experience in social situations. New understanding and awareness is helping to mitigate the numbers by explaining the reactions that those with ASD have to auditory and visual stimuli.
Those with Autism look no different from children without the disorder, but their experience of the world and their interaction to it is much different. What previously was diagnosed as an intellectual disability is now understood to be isolating behavior associated with ASD. Children with ASD experience a wide range of symptoms, skills and levels of impairment or disability. Some children are mildly impaired by their symptoms, while others are severely disabled. A lack of understanding related to the abnormal reactions typical of someone with ASD can cause further isolation and was routinely misdiagnosed as proof of intellectual disabilities. New research and understanding indicates that in some cases the lack of eye contact, lack of responsiveness to external stimuli and unusual responses from a child with ASD are in fact related to how they communicate and see the world. This inability to communicate or see the world in the way most children do can end in tragedy for local parents.
In May 2013, this was the case when a 6-year-old with autism wandered from his condo and drowned off Perdido Key. Out of that tragedy, many in our area have an increased awareness of the dangers of wandering for those with autism. This situation highlights the importance of programs such as Project Lifesaver that are offered by Autism Pensacola. As the impetus for local awareness, this tragedy teaches us that we each play an important role in helping these vulnerable children. Since the tragic death of this child, we now have 15 children enrolled in Project Lifesaver. The program offers a tracking bracelet that makes finding a child who wanders much easier. A collaboration between Escambia Search and Rescue and Autism Pensacola, it is funded in part by a generous donation of funds from Sheriff David Morgan. In addition to the bracelets, Autism Pensacola also provides a free Safety Notebook parents can use to prepare for an emergency with their child.
At United Way, donors have chosen to support Kids for Camp because they understand that the challenge of improving health goes beyond promoting healthy eating and physical activity. They know that a good education leads to more employment opportunities that create financial stability, thereby enabling better access to quality health care. For those who have ASD, collaboration and advocacy are essential to their success. They cannot effectively share their feelings or their stories. They need more of our community to understand their behavior isn’t a choice or willful disregard of social decorum.
As the sole staff member at Autism Pensacola, Byram welcomes your support of local activities. She is always looking for volunteers. You can join her by supporting the membership activities offered to families living with autism. Reduced rates for local events, discounts to your business or sponsorship of informational meetings and workshops are ways you can help. Project Lifesaver is always in need of funds to help maintain the transmitter bracelets that families can secure for their loved one who has a history of wandering. Finally, there are many families in our area who have children with special educational needs. Your support enables them to receive consultation, education and support navigating the individualized educational plans their children need to be successful.
If you need support for a child or family member with ASD, you can call 211. Join United Way in making a difference for these families and others in our community. Autism Pensacola has an office on 10th Avenue in Pensacola that is open from 9 a.m. to 4 p.m. Monday through Friday. You can reach them at 434-7171 or visit www.autismpensacola.org to learn more.
Andrea Krieger is the president and CEO of United Way of Escambia County. Krieger also volunteers on several local nonprofit boards.