The new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is supposed to be released in May 2013, and with its publication could come a sea of changes to mental health diagnoses.
People with autistic disorder (autism), Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified, will be on the “autism spectrum” instead of being diagnosed with separate disorders, if the proposed revisions to the DSM are accepted.
Or people with these disorders currently might not fit the criteria for the new autism spectrum disorder, which is the fear of some activists and advocates.
A press release from SafeMinds, a non-profit organization that funds research related to mercury and autism, stated that there are multiple concerns with the proposed revisions, such as that the revisions will “potentially disrupt appropriate and necessary services to hundreds of thousands of individuals in the U.S., hamper the ability to track the numbers of people with autism, and interfere with efforts to establish biological causes of autism.”
Some children who could be helped by early intervention and treatment might be overlooked with the new autism spectrum disorder criteria, making it difficult for them to get help later on in life, according to the press release.
The American Psychiatric Association issued a news release explaining the reasoning behind the proposed changes.
“The proposal asserts that symptoms of these four disorders represent a continuum from mild to severe, rather than a simple yes or no diagnosis to a specific disorder,” according to the news release. “This change will help clinicians more accurately diagnose people with relevant symptoms and behaviors by recognizing the differences from person to person, rather than providing general labels that tend not to be consistently applied across different clinics and centers.”
Dr. James Scully, the medical director of the American Psychiatric Association, suggested in the news release that the new autism spectrum disorder would actually improve accuracy in diagnosis and could lead to better treatment for children.
Other experts and people involved in the autism community have varying opinions on the proposed changes.
Barbara Avila, a family autism consultant and the vice president of family and community support at Mundo Pato, a website resource for families coping with autism, said in an email that the revisions are controversial.
“The reasoning behind the proposal seems to [be] an attempt to better diagnose [and] include more individuals with similar needs, so [as] to best follow up with appropriate treatment,” Avila said.
“I certainly agree with better diagnosis and the extreme importance of early identification and treatment. However, many parents and people who identify more with an Asperger’s diagnosis than an Autism diagnosis strongly disagree with losing the Asperger’s diagnosis in favor of one overall autism diagnosis.”
She believes that autism and Asperger’s are both disorders with different issues, and if people from both disorders are placed on a new spectrum together, they might be confused and not identify with other people who have the same diagnosis. For example, some people with autism are nonverbal, whereas people with Asperger’s don’t have as many communication issues.
“One overall autism diagnosis may leave people on the ‘higher end’ of either spectrum confused and some say may even delay treatment if they truly do not identify with what the media typically portrays as autism being as severely debilitating,” Avila said.
Sam Goldstein, a clinical assistant professor of psychiatry at the University of Utah School of Medicine and co-author of the Autism Spectrum Rating Scale, said in an email that he has done extensive research on children with and without autism in order to create the Autism Spectrum Rating Scale.
“We concluded that autism fell along a continuum and that children with Asperger’s or Pervasive Developmental Disorder - Not Otherwise Specified for that matter, simply had a milder presentation of the condition,” Goldstein said. “We did not find that there were any symptoms or impairments that differentiated the populations, including language.”
He doesn’t think the changes will negatively impact people who currently have the different disorders that will eventually fall under the autism spectrum disorder.
“The diagnostic rate may change slightly but services for children can be obtained at school under a variety of categories and disabilities,” Goldstein said. “For example, a child with socialization problems can receive assistance even if they do not meet diagnostic criteria for autism.”
He said that even though the revisions are helpful, other changes could have been made to the criteria as well.
“Our research has demonstrated that problems of self-regulation and attention are characteristic of the autistic condition, yet once again these symptom descriptions are not going to be included in the diagnostic protocol,” Goldstein said. “It is of interest to note that more than half of children with autism meet diagnostic criteria for ADHD. Many take medication for this problem. Our data suggests it is not a co-occurring problem but rather part of the autistic condition.”
Elizabeth Fein, a psychology fellow who works at SociAbility, a private practice that helps children and adults who have social thinking disorders like Asperger’s and autism, said in an email that she thinks the new changes could harm women with social thinking disorders even more.
“Because so many more men than women are diagnosed with autism spectrum disorders, the diagnostic criteria tend to reflect how men with these disorders act,” Fein said.
“It is likely that women on the spectrum are already underdiagnosed; with the tightening of diagnostic criteria, more women who do not fit the typical profile of a person on the spectrum may not get diagnosed even though they are struggling and need help.”
American Psychiatric Association. DSM-5 Overview: The Future Manual. Web. Feb. 1, 2012.
SafeMinds. About SafeMinds. Web. Feb. 1, 2012. http://www.safeminds.org/about/about-safeminds.html
PRNewswire. Changes in DSM-5 Autism Definition Could Negatively Impact Millions. Web. Feb. 1, 2012.
American Psychiatric Association. DSM-5 Autism Spectrum Disorder News Release 1-20-12. DSM-5 Proposed Criteria for Autism Spectrum Disorder Designed to Provide More Accurate Diagnosis and Treatment. Web. Feb. 1, 2012. http://www.dsm5.org/Pages/Default.aspx
Mundo Pato. Online Training for the Autism Community. Web. Feb. 1, 2012. http://www.mundopato.com/our-educators/barbara-avila
Avila, Barbara. Email interview. Jan. 31, 2012.
Goldstein, Sam. Email interview. Feb. 1, 2012.
Fein, Elizabeth. Email interview. Feb. 1, 2012.
Reviewed February 2, 2012
by Michele Blacksberg RN
Edited by Jody Smith