After a 14-year revision process, the American Psychiatric Association announced the final changes in its Diagnostic and Statistical Manual of Mental Disorders, known as DSM-5, on Dec. 1. The manual is sometimes referred to as "the Bible" for mental health diagnoses. The changes will take effect in May 2013.
One change in particular, which places those with an Asperger's diagnosis under the umbrella of "autism spectrum disorders," has caused ripples in the local community. Peninsula mental health professionals and school officials don't anticipate any major changes in services as a result, but some parents have expressed concern that their children's needs will be overlooked.
First recognized by the DSM in 1985, Asperger's has always been considered a high-functioning form of autism by health professionals. Those diagnosed typically have a high intellect, but an inability to read body language or social cues. They also often share traits with severely autistic children in the realm of problems with sensory stimulation and obsessive behavior.
The DSM change was not unexpected. Maria Urbano, co-director of the autism spectrum disorders program at Eastern Virginia Medical School, believes it's a carefully considered change that will eliminate inconsistencies in diagnosis. "There's been a lot of confusion in diagnosis," she said, noting one study that showed children received different diagnoses according to where they lived. "Also, if we have one common diagnosis, perhaps research can move forward a little easier," she said.
The impact isn't yet known with regard to insurance reimbursements and services offered for individuals with the disorder that affects a small percentage of those on the spectrum. For autism, the numbers have grown to 1 in 88 children, with boys affected at five times the rate of girls, according to the Centers for Disease Control.
The Arc, a national advocacy group for people with intellectual and developmental disabilities, reacted to the change with this statement: "These distinctions are critically important to our constituents as numerous federal and state programs, as well as private health insurance plans, use this manual to determine eligibility for critical services and supports." However, a spokeswoman could not elaborate on what services might be affected.
Locally, Peninsula mental health professionals played down the importance of the DSM diagnostic change and suggested that, if anything, it would likely make services more available to a wider range of people with disabilities. "I expect more people will get access," said Tracey Charity-Ray, IDD program manager for children at the Hampton-Newport News Community Services Board, herself the mother of a 9-year-old daughter with autism. She emphasized that the effect on funding is unknown as yet, but thought the diagnosis of autism might automatically qualify children for services. "Asperger's and autism both need social programs," she said.
She's sympathetic to other parents' fears. "When you look at schools, you don't want services to be based on the diagnosis but on individual needs. Autism spectrum disorder looks different in each child. You want services based accordingly," she said.
Cathy Coley, a Yorktown mother of a 14-year-old 8th-grader with Asperger's, agreed. A Massachusetts transplant and special ed tutor, she said, "It's just harder here. It comes from how funds are appropriated and awareness." Her goal for her son, who was diagnosed as a 2-year-old with "pervasive developmental delay, not otherwise specified," is for him to be mainstreamed. He has been on an IEP (individualized education program) under the autism spectrum since he was 10, and last year the family and school agreed to keep his plan. As a result, the DSM change won't make any difference to his educational plan.
Like others, Coley is concerned about the lack of knowledge concerning the range of differences in children on the autism spectrum. "A lot of administrators don't understand the spectrum. He's not the kid sitting in the corner rocking," Coley said of her high-functioning, academically successful son. "Administrators typically find it easier to lump them all together in a contained classroom," she said. It's critically important that he stay engaged with his neuro-typical peers," she added.
Local school systems don't anticipate any difference in the special education services they offer. Both Richard Dirmeyer, special education supervisor with Newport News Schools, and Lisa Powers, director of special education for Hampton schools, said they didn't anticipate any effect on the number of students receiving services. "They're just cleaning up the language in the DSM. It's already considered under autism," said Powers.
Karin Wulf understands the concerns, but believes that the change could have positive outcomes for both research and inclusion. An associate professor at the College of William and Mary and co-chair of its neurodiversity working group, Wulf has an 11-year-old son with an Asperger's diagnosis. "It's the right thing to do to wrap these together. There's something more ethical about it. Autism is a broad spectrum," she said. She believes it might lead to greater understanding of nonverbal children with autism who are not cognitively disabled.
Wulf credits TV shows with the creation of a "cultural shorthand" about Asperger's in the portrayal of characters such as Sheldon on "The Big Bang Theory." "People know what it means, that it's a social rather than cognitive disability. It's harder to say he's autistic. They don't have a sense of how broad that range is," she added.
Charity-Ray at the Community Services Board summed up parental fears of the change, "They don't want them to get lost in the diagnosis," she said.
To see the final DSM changes that will take effect in May 2013, go to http://www.dsm5.org.