Experts at Autism Speaks have put together answers to your questions to help you better understand what the DSM-5 changes mean and how they might affect your loved one's diagnosis and access to services.
- What is the DSM-5?
- Why did it change from the previous version?
- Who revised the DSM definition of autism spectrum disorder (ASD) and why?
- What are the new criteria?
- What changes to the diagnosis of autism spectrum disorder did the APA approve?
- How will these changes affect my (or my child’s) diagnosis, treatment and support services?
- How will these changes affect my (or my child’s) insurance coverage for autism spectrum disorder?
- How will these changes impact adults with ASD?
- Can I or my child retain the diagnosis of Asperger syndrome?
- What is the new Social (Pragmatic) Communication Disorder diagnosis?
- Is SCD part of the autism spectrum?
- Will insurance companies cover treatments for SCD?
- If my child is currently receiving Special Education services with an Asperger or PDD-NOS diagnosis, will these services continue as is or do we need to get re-evaluated?
- My child’s doctor does not listen to my concerns. I’m afraid my child will not receive a thorough diagnostic assessment. What do I do?
- What is Autism Speaks doing?
- Additional Questions?
Published by the American Psychiatric Association (APA), the Diagnostic and Statistical Manual of Mental Disorders (DSM) is used to diagnose mental and behavioral conditions. The fifth edition, the DSM-5, will be released on May 18, 2013 and announced at the annual meeting of the APA.
The DSM is a living document that has changed several times over the last few decades to reflect new research and ongoing psychiatric practice. The criteria were changed to improve the accuracy of the diagnoses and to allow clinicians the ability to describe specific symptoms seen in individuals.
The members of the APA’s Neurodevelopmental Disorders Work Group. Their names and affiliations can be found here. The American Psychiatric Association assembled this committee of experts to consider revisions to the current definitions of autism and related neurodevelopmental disorders that reflect advances in research since the DSM-IV criteria were created. The committee solicited and integrated input from the community, including families and people on the spectrum, scientists and clinicians, and advocacy organization, including Autism Speaks. The goal was to overcome inconsistencies and improve reliability in how ASD is diagnosed.
There are two domains where people with ASD must show persistent deficits. They include 1) persistent social communication and social interaction, and 2) restricted and repetitive patterns of behavior.
More specifically, people with ASD must demonstrate (either in the past or in the present) deficits in social-emotional reciprocity, deficits in nonverbal communicative behaviors used for social interaction, and deficits in developing maintaining and understanding relationships. In addition, they must show at least two types of repetitive patterns of behavior including stereotyped or repetitive motor movements, insistence on sameness or inflexible adherence to routines, highly restricted, fixated interests or hyper or hyper reactivity to sensory input or unusual interest in sensory aspects of the environment.
Under the new DSM5, clinicians should also rate the severity of these deficits, based what level of support they require.
The five major changes are:
- The new classification system eliminates the previously separate subcategories on the autism spectrum, including Asperger syndrome, PDD-NOS, childhood disintegrative disorder and autistic disorder. These subcategories will be folded into the broad term autism spectrum disorder (ASD).
- Instead of three domains of autism symptoms (social impairment, language/communication impairment and repetitive/restricted behaviors), two categories will be used: social communication impairment and restricted interests/repetitive behaviors. Under the DSM-IV, a person qualified for an ASD diagnosis by exhibiting at least six of twelve deficits in social interaction, communication or repetitive behaviors. Under the DSM-5, diagnosis will require a person to exhibit three deficits in social communication and at least two symptoms in the category of restricted range of activities/repetitive behaviors. Within the second category, a new symptom will be included: hyper- or hypo-reactivity to sensory input or unusual interests in sensory aspects of the environment.
- Symptoms can currently be present, or reported in past history.
- In addition to the diagnosis, each person evaluated will also be described in terms of any known genetic cause (e.g. fragile X syndrome, Rett syndrome), level of language and intellectual disability and presence of medical conditions such as seizures, anxiety, depression, and/or gastrointestinal (GI) problems.
- The work group added a new category called Social Communication Disorder (SCD). This will allow for a diagnosis of disabilities in social communication without the presence of repetitive behavior.
First, all individuals who currently have a diagnosis on the autism spectrum, including those with Asperger syndrome or PDD-NOS, will not lose their ASD diagnosis. In other words, if you have a diagnosis for ASD, you have a diagnosis of ASD for your life and should be entitled to appropriate interventions for the rest of your life. Need for individualized services may change, and you or your child may need different levels of support or different interventions as you or your child age.
No one should be reevaluated or “lose” their diagnosis because of administrative reasons of the DSM-5.
Second, the revisions are intended to more reliably capture all those who would have legitimately received a diagnosis of ASD under DSM-IV. The intent is not to exclude or reduce the number of individuals being diagnosed. However, there is a need for ongoing monitoring of how the DSM-5 criteria affect diagnosis, especially those adults and very young children, two groups for whom we still have relatively little information. The committee has stressed that the new DSM-5 criteria represent a “living document,” in which changes can and likely will be made as new studies are conducted.
If your insurance plan currently provides coverage for diagnosis and treatment of autism spectrum disorder, there should be no disruption of coverage as a result of the DSM change. Please contact the Autism Speaks Advocacy team at firstname.lastname@example.org if you experience a problem.
If you would like additional information regarding diagnostic codes please visit the DSM-5 site.
The DSM-5 criteria should not impact adults any differently.
Many individuals may wish to retain their previous diagnosis as the label is considered part of their identity or may reflect a peer group with whom they identify. This is perfectly acceptable. A clinician can indicate both the DSM-5 diagnosis as well as the previous diagnosis, such as Asperger syndrome, in an individual’s clinical record.
The DSM-5 text states “ Individuals with a well-established DSM-IV diagnoses of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder”.
Social Communication Disorder is a new diagnostic category. It is meant to apply to individuals who have deficits in the social use of language, but do not have the restricted interests or repetitive behavior you see in autism spectrum disorders. Some children who previously would have received a diagnosis of PDD-NOS may now receive a diagnosis of Social Communication Disorder. This should only apply to newly diagnosed individuals. Individuals who receive this diagnosis would likely benefit from services typically provided to individuals with autism.
SCD is not included under the autism spectrum disorder category, instead it is a communication disorder. If an individual meets criteria for an autism spectrum disorder, they will receive that diagnosis rather than SCD.
If Because this is a new diagnosis, it is unclear what challenges people will have in accessing insurance coverage. If you are a person or the parent of a person recently diagnosed with SCD, we need to hear about your experience here.
If my child is currently receiving Special Education services with an Asperger or PDD-NOS diagnosis, will these services continue as is or do we need to get re-evaluated?
Your child should not receive a standard re-evaluation and re-consideration of treatments unless a clinical or legal reason to do so.
My child’s doctor does not listen to my concerns. I’m afraid my child will not receive a thorough diagnostic assessment. What do I do?
We highly support the needs of individuals with both developmental disorders and psychiatric diagnoses. Individuals who need help, whether it be for autism or for ADHD or for SCD need supports and interventions to help them fulfill their potential. If you have concerns, say something. Talk to your doctor about your concerns. If you don’t feel he or she is listening, request an appointment with another doctor. If your child is in school, talk to his or her teacher about an Individualized Education Plan.
Going forward, it will be crucial to study how the new criteria function in real world community settings. For example, the first DSM-5 field trial was conducted with school-age children of primarily Caucasian background and evaluated by specialists in academic centers. As such, we need more information about how the new criteria will affect diagnosis of children from more diverse ethnic backgrounds in community settings. To this end, in collaboration with the Centers of Disease Control and Prevention, Autism Speaks is funding a study comparing the DSM-IV and DSM-5 criteria in a large ethnically diverse, community-based sample of children in South Carolina. This is in addition to another community study comparing the two sets of criteria with children in South Korea.
We also need to conduct research that examines how the criteria affect diagnosis of ASD in both younger children and adults. As always, we will remain in close communication with the autism community as new information becomes available. As always, we will also continue to advocate for all those affected by autism to ensure that they receive the services and supports they need.
Lastly, we have developed two surveys – one for individuals and families affected by autism and one for professionals. We’ve designed them in a way that will allow us to analyze the results and provide powerful feedback to the American Psychiatric Association and the autism community (no identifying information will be shared). We want to hear from individuals, families, teachers, therapists, physicians and others who are using the new diagnostic criteria or being affected by them – either directly or indirectly. Visit www.autismspeaks.org/dsm5 to learn more.
Questions or concerns? We're happy to help! Contact the Autism Response Team at 888-AUTISM2 (888-288-4762), en Espanol 888-772-9050, or email email@example.com.