Solid families are best bet for autistic kids

April 26, 2009 12:36 am

Debra and Matt Cody (above) understand the challenges of raising an autistic child better than most parents, as all three of their children have the disorder.

CHILD REARING is a challenge for many parents. But parents raising a child with a disability face challenges greater than the norm. Between two-thirds and three-quarters of "special" marriages fail, according to Tim Sweeney, a licensed clinical social worker who helps these families. Such statistics are alarming, especially in light of research indicating that family weakness affects the success of a child's therapy. But the commonwealth and its communities can--and should--do more to prevent these households from crumbling. With April officially designated National Autism Awareness Month, let's consider how a modest amount of public and private support could significantly ease the plight of special-needs families.

Chronic exhaustion plagues the parents of many children with special needs. A child with autism may sleep no more than a few hours at time because of sensory processing issues. For youngster and family, waking hours are governed by specialized routines, medications, and hours of various support therapies.

Intense tantrums can bring household activities to a standstill for hours. Families get few, if any, breaks, because of the lack of respite or caregivers. Parents worry if they're doing enough or using the right therapy and if siblings are getting the love and attention they deserve. Couples wrestle with inflexible on-the-job hours to keep up with appointments. Many parents neglect each other to meet the needs of their child. These families often feel isolated.

As a state and a community, we can help prevent these special marriages from disintegrating. A child with special needs comes with the added cost associated with therapies. Let's ease this extra burden by requiring insurance companies to cover the cost of therapy for children with autism and related disabilities.

Think therapy can't possibly cost that much? Think again. Therapy for a child with a developmental disability such as autism can cost a family nearly $40,000 a year, according to Dr. Richard Solomon, a developmental and behavioral pediatrician whose home-based P.L.A.Y. Project curbs the cost of autism therapy.

For starters, some pediatric diagnosticians charge $1,000 to observe, spend time with, and evaluate a child for a disability--a process that can require several days of appointments. What's more, genetic testing may be needed to rule out potential syndromes or additional disabilities. That diagnosis can cost nearly $1,000, according to the insurance industry. To consult a doctor specializing in developmental disabilities, parents often must wait months--and travel many miles to a large university medical center--for an appointment. If you can find qualified therapists to work with your child, ongoing treatment hardly comes cheap.

But institutions and agencies, too, can pitch in to support children and adults with autism. To ensure that therapists and teachers receive training based on current studies, we need to continue sustaining research into strategies most effective for individuals with autism. We should take note of what works for strong, resilient special-needs families that are thriving. When we share lessons learned by others, all parents have a better chance of experiencing the joys of celebrating their child's growth.

Let's ask organizations, educational institutions, and individuals to do more. Parents and families need better access to training and resources, such as the University of Mary Washington's autism certificate programs and its free Autism Brown Bag Dinner lectures held in April.

Community groups can follow the example set by The Arc of Rappahannock, offering the Daybreak weekend respite program in donated church space to local parents of kids with developmental disabilities. Agencies, organizations, and churches can benefit from training, as well. With more community organizations educated to become disability friendly, more activities can involve and benefit special-needs families. Consider how McLean Bible Church's Access Ministry features a range of programs to allow people with disabilities to participate and contribute.

Please join us at UMW in our effort to collaborate with our community to provide opportunities for families, individuals with autism, and agencies to connect. Collaborate in your area to develop better resources, training, and respite for special-needs families. Together, we can better support families facing a tough challenge and enable them to thrive.

Nicole Myers is associate professor of education and coordinator of the Autism Certificate and BCABA programs at the University of Mary Washington.