Research and a Registry
October 9, 2009 by Jeff Stimpson
Filed under Health
New genes and genomic regions that might be associated with autism have been identified by an international research team. The researchers identified a single-letter change on chromosome 5 near a gene called semaphorin 5A, which is believed to help guide the growth of neurons and their long progressions, called axons. The activity of this gene appears to be reduced in the brains of people with autism. More is here.
Photo courtesy of D Sharon Pruitt (flickr.com)
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Today I helped give a presentation in a Queens hospital to young doctors and the subject of how to deliver bad news about a child’s special needs to parents. The illumination factor in these events usually runs one way – to the docs, who are grateful to have parents reveal these feelings — but today the senior doc there surprised me. There exists denial about special needs not just on the part of some parents, he’s found, but also on the part of some physicians when it comes to delivering a formal diagnosis. I never thought of that.
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New Jersey, which last summer mandated insurance companies cover certain therapeutic services and behavioral intervention as it relates to autism and other developmental disabilities, has taken the plunge of an official autism registry.
Gov. Jon Corzine claims the registry “will make it easier for families of children with autism and other special health care needs to be connected to the appropriate diagnostic, treatment and support services in their communities.” It will require psychiatrists, psychologists, neurologists and other medical professionals to register the children they are diagnosing with autism and birth defects such as Down’s Syndrome, cleft palate and heart or muscular defects.
New Jersey’s autism rate is 1 in 94. When I learned that a few months ago, I thought, “Wow, that’s high. Imagine of the overall autism rate were 1 in 100!” The registry will surely help streamline delivery of services, and let’s hope the police and fire departments are among the first with access to this potentially critical information.
On that subject, the Autism Society on Prince Edward Island, Canada, is working on ways to educate emergency responders about the special challenges of assisting people with autism. The society has created stickers that will let firefighters and police know that a person with autism is present.
