DSM-5 Autism Spectrum Disorder (ASD) Frequently Asked Questions The rules for diagnosing autism spectrum disorders recently changed. We were hoping to update you on the changes and to answer some questions that may come up. Autism spectrum disorders (ASD) are described in a book published by the American Psychiatric Association, called the Diagnostic and Statistical Manual of Mental Disorders. This book is often called the DSM and it includes definitions and descriptions of all of the conditions that are considered psychological, such as depression, anxiety, and schizophrenia. This manual is a rule book for grouping people together, who have similar patterns of behavior that interfere with their daily lives. What makes “psychological conditions” like autism different from more traditional “medical conditions” is that they do not have clear biological features that can be measured. In other words, right now, there is no blood test that you can take to diagnose autism. In May of this year, a new and updated version of the DSM was published, called the DSM-5. This is the fifth version of the manual. The definition of autism spectrum disorders changed in the DSM-5. What were autism spectrum disorders called before DSM-5? How has ASD diagnosis changed in the DSM-5? How were these changes decided upon? How will the Kirch Center respond to these changes? What should I do next? (Making appointments at Kirch) What if my child is given a different diagnosis? (Next steps and social communication disorder) My child had Asperger’s disorder before, can he keep that diagnosis? Will getting a new diagnosis affect my child’s services at school? I’m hearing a lot of mixed messages. What you just told me is different than what I read online or heard from my friend. Other Resources What were autism spectrum disorders called before DSM-5? Before DSM-5, autism spectrum disorders were called Pervasive Developmental Disorders. This group of conditions included autism, Asperger’s disorder, pervasive developmental disorder-not otherwise specific (PDD-NOS), Rett Syndrome and Childhood Disintegrative Disorder. All of these diagnoses involved problems with communication skills, social skills, plus patterns of repetitive behaviors. How has ASD diagnosis changed in the DSM-5? The definition of ASD changed in a number of different ways, in the DSM-5 compared to the DSM-IV (the fourth edition of the manual). First, autism, Asperger’s disorder, and PDD-NOS used to be considered separate diagnoses. Now they are combined and are referred to by a single name – Autism Spectrum Disorder. Second, the diagnostic guidelines have become much more specific. In the old system, autism was diagnosed in people who had at least six symptoms across three different areas, including problems with communication, problems with social skills, and repetitive behaviors. The new definition requires three specific symptom types in social/ communication skills and at least two repetitive behaviors. Third, there is no longer a requirement that people must show developmental delays before the age of 3. Finally, the new diagnosis includes severity scores designed to reflect the level of support and intervention that the people require. How were these changes decided upon? The changes were based on research that has been going on since the last version of the DSM came out. A panel of international experts reviewed the research and found that using the old system of diagnosis, doctors were good at figuring out whether someone was on the autism spectrum. However, one doctor might have given a person a diagnosis of Asperger’s, while another doctor would say that it was PDD-NOS. This was confusing to everyone involved. To help resolve this issue, the new rules combined the three diagnoses into one. This makes sense because they are thought to reflect a common set of features and common underlying causes. How will the Kirch Center respond to these changes? What should I do next? (Making appointments at Kirch) We are working hard to respond to the recent changes. Most children and adolescents with a previous diagnosis will still meet the guidelines for diagnosis of Autism Spectrum Disorder. A small number of children may not meet the new criteria. This will mostly be children who do not have repetitive behaviors or who show very mild symptoms. This is what you can do: We encourage families to make an appointment with their regular provider (either the pediatrician or nurse practitioner who they routinely see in Kirch). When you call, say that you need a regular follow-up visit and that you would like to talk about your child’s diagnosis. At the visit, your child’s doctor or NP will observe your child’s behaviors and talk to you about your child’s current symptoms. He or she may also go through a symptom checklist. This will allow the doctor or nurse to see whether he or she still meets criteria, according to the new rules. If your child does, your provider will confirm the diagnosis during that appointment. In some cases, it may take more than one visit to go over all of your child’s symptoms. If this happens, your doctor or NP will tell you what to do next. You will either make a second follow-up visit or schedule a longer visit that would allow time for a psychologist to do an ADOS. The ADOS is a test designed to see whether a child shows ASD symptoms. This test may be used in more complicated cases or when a child’s behaviors have changed a lot since initial diagnosis. You will probably meet with a psychologist for an ADOS, rather than your usual provider. We realize that understanding your child’s diagnosis is very important to you. We will do our best to see you as quickly as we can. Please bear in mind that doing a good job of confirming diagnosis may take several visits. What if my child is given a different diagnosis? (Next steps and social communication disorder) Many parents fear that their child may lose their ASD diagnosis. Although there has been speculation that this may happen, we do not yet know if this is true. Again, we expect that most children or adolescents who have a current diagnosis on the autism spectrum, will remain on the spectrum. However, the name of the diagnosis may change. For example, many people with Asperger’s disorder and PDD-NOS will be given the new diagnosis of Autism Spectrum Disorder. People who do not have repetitive behaviors but still struggle socially may get a new diagnosis called Social Communication Disorder. This new diagnosis is designed to acknowledge that there are people who have perfect vocabularies, but who still struggle with the social aspects of language, such as understanding sarcasm or successfully holding a conversation. It is important to know that Social Communication Disorder is considered a Language Disorder and not an Autism Spectrum Disorder. There are still not clear guidelines about the best way to assess for Social Communication Disorder. Your provider may suggest that you meet with a Speech and Language therapist, who can test features of your child’s expressive language and his or her understanding in different situations. It is also possible that a diagnosis may be made without a comprehensive speech and language evaluation. Your provider will talk to you about what to do next. Since Social Communication Disorder is a new diagnosis, we do not yet know how school districts or insurance companies will respond to it. In other words, we do not yet know what services will be available for a child with this diagnosis. My child had Asperger’s disorder before, can he keep that diagnosis? Asperger’s disorder is no longer an official diagnosis in the new system. So, children and adolescents with an Asperger’s diagnosis will now be given a diagnosis of Autism Spectrum Disorder. The transition to this new label can be challenging for many children and families. Many people feel like their Asperger’s diagnosis just made sense and that it perfectly described them. Transitioning to a new diagnosis can feel like a loss of identity, since many people with Asperger’s strongly relate to their diagnosis and with their likeminded peers. However, even with an ASD diagnosis, affected children and adults may continue to identify as a person with Asperger’s syndrome and pursue Asperger’s social groups and activities. Families and schools may still find that books written about Asperger’s disorder are helpful. Will getting a new diagnosis affect my child’s services at school? We do not anticipate that your services will change. However, these decisions are always made by the school district based upon educational testing and needs. We are not yet sure how the diagnosis of Social Communication Disorder will be handled by school. Classification in the category of Speech and Language Impairment may be considered. Services are always provided base on the child’s symptoms and broad educational needs. This should continue to be the case. Families should always talk with their school’s Committee for Special Education about concerns. I’m hearing a lot of mixed messages. What you just told me is different than what I read online or heard from my friend. Right now there is a lot of conflicting information about how the new rules for diagnosing autism will affect families. Some organizations say that all children with prior diagnoses should get an ASD diagnosis without re-evaluation. Others suggest that re-evaluations are both important and necessary. We are working to respond to the changes in a way that best serves the interest and wellbeing of all of the children and families that we serve. DSM-5 states that all children with past diagnoses of autism spectrum disorders should get a current Autism Spectrum Disorder diagnosis, unless they do not have enough repetitive behaviors to meet the new guidelines. In this case a diagnosis, such as Social Communication Disorder will likely be given. To make sure that we really understand your child’s current behaviors, we will review current symptoms at regular follow-up visits. We believe that this is the best way to reach all families and to address questions and concerns. Because this is a new process, we are not yet sure how school districts or insurance companies will respond to changes in diagnosis. We will do our best to provide you with updated information as soon as we have it. Other Resources More information on the changes to the Autism Spectrum diagnosis can be found at: American Academy of Pediatrics American Psychiatric Association The American Psychiatric Association has a DSM-5 website. Click on Autism Spectrum Disorder in the menu bar on the right.