Autism, Asperger’s disorder and pervasive developmental disorder not otherwise specified (PDD-NOS) are diagnoses which were once synonymous with the autism spectrum. However, on May 18, 2013 the y the American Psychiatric Association (APA) released the Diagnostic & Statistical Manual of Mental Disorders V (DSV-5). There were a few major changes within this release, the most notable was the removal of the diagnoses of Asperger’s disorder and PDD-NOS. Instead they released the new diagnosis of autism spectrum disorder (ASD), 299.00. While the release was in May, the new diagnostic codes were phased in over a period of months and did not fully go into effect until December 1, 2013.
The APA decided to make the changes to the autism diagnoses, including the elimination of the Asperger’s disorder and PDD-NOS, based on numerous cohort meetings and research completed over years to be more encompassing. Autism is often referred to as a spectrum disorder and the APA believed this to be an accurate description and it should be diagnosed as such.
It has also been hypothesized that referring to autism as autism spectrum disorder would remove the reference to Asperger’s syndrome as “high functioning autism”, which has never been a classification recognized clinically.
According to the new guidelines, autism is diagnosed as autism spectrum disorder, with specified levels 1-3 according to the severity. The levels are noted as follows according to the DSM-V, which has specific criteria to help clinicians determine at which level each patient is functioning: level 3 is the most severe level “requiring very substantial support”; level 2 “requires substantial support”; level 1 is the least severe which “requires support”.
The DSM-V changes to the diagnosis of autism spectrum disorder did not result in children losing a diagnosis. Children previously diagnosed with Asperger’s disorder or PDD-NOS were given the new ASD diagnosis at their next re-evaluation for outpatient mental health services. The DSM-V changes did not affect disability categories under the Individuals with Disabilities Education Act of 2004 (IDEA 2004), therefore did not impact special education programming.
There are some diagnosticians (therapists, doctors etc) who are not assigning levels to the severity of the autism spectrum disorder when first giving the diagnosis, which some insurance companies require for necessity of services. Some clinicians have reported they do not include it because it is very subjective and there has not been much information released regarding guidelines on assigning levels to the severity, which is mostly true. However, if requested by the insurance company or another entity, they will provide a level if they have not previously done so.
Professionals have had some confusion about the ASD diagnosis and levels. Parents and caregivers have experienced even more confusion about the changes, especially before the release. When the modifications were first announced there was “panic” amongst many, even with literature and information released. It was unknown how the transition would actually take place. Many were worried if their child had the Asperger’s diagnosis, they would no longer be able to receive services and treatment, which was a falsehood. But there were many unknowns prior to implementation of the DSM-V.
Nearly two years later the transition to the new diagnosis of ASD was generally smooth. Children did not lose services and received the new diagnosis in place of a discontinued diagnosis, without much difficulty.
However, people continue to use the Asperger’s diagnosis as a descriptor, whether it is out of habit or lack of knowledge. Many try to redirect them to use the appropriate term of ASD, as that is what it is correct. However, many books and research articles still have the old terminology. While the terminology is being phased out in print, it is important to use the correct terminology in everyday use as to not confuse parents and even professionals.
While the diagnoses of Asperger’s disorder and PDD-NOS no longer exist, autism spectrum disorder does and is increasing at alarming rates. Current Center for Disease Control (CDC) statistics has the rate of autism at 1 in 68. However, on November 13, 2015, newly published research suggests the prevalence could be as high as 1 in 45 children are diagnosed with autism spectrum disorder.