Tennessee struggles to get accurate count of children with autism

From The Tennessean:

The number of children with autism receiving special education in Tennessee more than tripled this decade. But the state still struggles to count how many kids have the disorder, making it difficult to deliver services to assist them.

The problem was highlighted in a report released Thursday by Tennessee Comptroller Justin Wilson's office. It found no central place where autism diagnoses are reported and a virtual alphabet soup of state and local agencies and nonprofits that provide services.

Autism — a term used to encompass Autism Spectrum Disorders — is a group of developmental disabilities that can affect communication and social behavior. Those diagnosed often require special services to help with their education and development.

Since 1992, the federal government has required states to report the number of children with autism receiving special education services. And the data show that autism diagnoses are becoming more common. The comptroller's report is the first in a series aimed at examining services available to the state's children.

The services available to children living with autism and their parents' experiences trying to access them are worth examining but really in need of an urgent fix, said Leisa Hammett, who has a 15-year-old autistic daughter. Hammett also is a moderator on www.Nashville.momslikeme.com, The Tennessean's social networking site for mothers.

"It's a hideous, hideous state of affairs," said Hammett. "…I used to say some of the systems that are supposed to help us end up wounding us. I think that I and a lot of parents know that trying to get the services your child may need in this state can feel a lot like banging your head against the wall."

Parents of children with autism want to raise their children to become productive adults with full lives, Hammett said.

To do so, Hammett says it's not uncommon for the families of children with autism to mortgage their homes to cover the cost of treatments and vocational training, and in some severe cases even adult diapers. Navigating the patchwork of social services in Tennessee can be challenging for even the most informed and aggressive parents.

The number of children across the country receiving special education because of autism grew from 94,000 in 2001 to 297,739 in 2007, a more than three-fold increase. The pattern held in Tennessee. In 2001, there were 1,293 children receiving special education due to autism and 4,019 in 2007.

But the report found counting autistic children receiving special education was an imprecise measure. For example, a child with a hearing impairment and autism may be reported to the federal government as a student receiving special education because of a hearing impairment. And, for children who have not yet reached school age reporting is even less precise, the report found.

Even the Centers for Disease Control and Prevention has seen its efforts to calculate how frequently autism occurs stymied by federal privacy laws.

"Other states have dealt with these issues in a variety of ways," said Joseph Woodson, an associate legislative research analyst in the comptroller's office who wrote the report released Thursday. "They've either combined their education and health care data or actually created their own autism registry."

Autism registries have been established in several states. Their contents vary. In some states, reporting a diagnosis is mandatory; in others it's voluntary. Also, the level of detail reported varies widely.

Amanda Peltz is the executive director of the http://www.autismmidtenn.org/">Autism Society of Middle Tennessee. She hears a lot of talk about the need for more information and data. It is difficult to advocate for autism service funding and policies without clear information on how many people are living with the condition, Peltz said. But, opinions vary about a Tennessee autism registry.

"There are several extremely high-functioning individual teenagers and adults," Peltz said, "who could go their entire life without needing to disclose that they have been diagnosed with an autism spectrum disorder. ... The concern for some parents in a registry is kind of like forcing people and not giving them that choice to disclose."

In Tennessee, there are similar registries where conditions such as traumatic brain injury, birth defects and cancer must be reported.