When the American Psychiatric Association (APA) announced tentative plans to officially redefine a number of autism spectrum disorders, the controversial news was met with both praise and criticism by many mental health professionals, educators and parents across the United States.
Under the proposed changes, the criteria for diagnosing autism spectrum disorders (ASDs) would be much stricter, with clients needing to display at least seven out of nine symptoms outlined in the fifth edition of the APA’s guide on disorders, the Diagnostic and Statistical Manual of Mental Disorders (DSM-V). Currently, clients need to display at least eight out of fourteen symptoms detailed in the DSM-IV to warrant an autism disorder diagnosis.
The changes could prove crucial to the estimated 1.5 million children and adults in the United States affected by autism spectrum disorders, as the DSM is often used as a guideline to establish treatment, insurance coverage and access to healthcare and special education services.
Additionally, the DSM-V proposals would re-categorize autism spectrum disorders into three levels based on the severity of the individual’s social communication deficits and tendencies to engage in restrictive interests and/or repetitive behaviors.
Perhaps the most controversial aspect of the APA’s proposed changes involve the consolidation of several disorders – including Asperger’s disorder, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (PPDOS) – into the autism spectrum.
“Our perspective is that while we support unified ASD criteria under a single diagnosis, we think it's important that said diagnosis cover all of those currently on the autism spectrum,” Ari Ne’eman, president and cofounder of the Autistic Self-Advocacy Network told JJIE.
In 2009, Ne’eman was appointed by President Barack Obama to serve on the National Council on Disability, becoming the first person with an autism spectrum disorder to do so.
“The fact of the matter is that the research indicates that ASD is underdiagnosed, not over-diagnosed,” he continued. “For adults, for women and girls, for people from racial and ethnic minority groups, accessing accurate diagnostic services is a real struggle. We need a DSM-V criteria that addresses that.”
Dr. Christine Ziegler, an expert in lifespan developmental psychology, has been involved with Georgia’s educational system since 1987. She is quick to note that ultimately, it is individual states and schools that have the most authority in determining how children with developmental and behavioral disorders are educated.
“Every state gets to decide how they want to use [the DSM] guidelines,” she said. “How the state chooses to use them is strictly up to them. For example, while federal guidelines indicate that borderline mental retardation starts at around 75 IQ points, there are schools that can say ‘well, let’s not take as much federal money and we’ll make it 70 points.’”
She said that recognizing Asperger’s as one of the less severe disorders within the autism spectrum is likely to have “beneficial” and “appropriate” outcomes for children formerly classified under the DSM-IV criteria, although she believes that students with more complicated disorders will likely continue to experience schooling difficulties.
Ziegler said that children displaying more severe cases of dysfunctional behavior are frequently unable to take, and subsequently be assessed by, standardized tests.
“My big problem,” she said, “is if you can’t test them, how can you say what they can and cannot do?”
Mary McCulloch, a self-described advocate for Georgia State Department of Education policy reform, said that the proposed DSM-V changes could still have a profound impact on the lives of children with autism spectrum disorders, most notably as it pertains to public schooling in the United States.
McCulloch, whose son has been diagnosed with Asperger’s disorder, said that she has had to personally ensure that the programs in her school district were accessible to students with similar learning disabilities – many of which may be eliminated as individual disorders in the next edition of the DSM.
“For learning disabilities, it is crucial that they get research based teaching in the classroom in order to remediate difficulties with reading and math, along with writing,” McCulloch said. “My oldest child has a learning disability with math and reading, so he was diagnosed back around kindergarten. Recently, I had to file a complaint about this, because my son was ready for Honors history.”
McCulloch said that her son did not initially have his writing accommodations met, which required the use of either a laptop or a “scribe” to assist him with his handwriting tasks.
“I think the issue with the diagnosis is just getting people diagnosed correctly,” McCulloch said. She said that if children with high-functioning autism or Asperger’s disorder characteristics lose their diagnoses, there is a possibility that they may miss out on educational training and other important services.
“Usually, these kids aren’t even given the opportunity of taking the advanced courses,” she continued, stating that she would like to see children “evaluated more often by competent psychologists.”
Regardless if the new proposals are officially accepted by the APA, Dr. Ziegler recommends that children with autism spectrum disorders participate in “individual educational programs,” which are designed according to children’s specific assessment scores.
“When parents and teachers and school psychologists get together to work out that program for that particular child, it is always in regard to what we need to do to help them do better in the areas where they are weak, and how can we use their strengths to help foster those areas,” she said.
“As long as everybody is evaluated on a case by case basis by a true expert, and they are placed appropriately, I think they will get a better education than we’ve ever seen.”
The Centers for Disease Control and Prevention states that approximately 1 in 110 U.S. children have symptoms diagnosable as autism spectrum disorders under current DMS-IV criteria, while additional research claims that only 56 percent of juveniles with autism are likely to complete high school.
The DSM-V is scheduled for publication in May 2013. The APA currently has preliminary draft revisions posted online, which is open to review and comments from the general public.
See “Self-injurious behavior in Autism Spectrum Disorder” Self injury, self harm, self-abusive behavior is something DSM-5 has yet to acknowledge is common among autistics of all functioning levels. Failing to research self injurious behaviors in the spectrum is not helping autism community.