The proposed DSM-5 changes with regard to ASD
Michelle Garcia Winner
I have been asked by many to share my thoughts on the proposed changes to the fifth edition of the Diagnostic and Statistical Manual (DSM-5) as they relate to our folks with social learning challenges. If you are unfamiliar with why the changes are being made, Google this concept to learn more. The American Psychiatric Association (www.apa.org) is responsible for writing and publication of the DSM. At the bottom of this blog find their proposed changes to autism spectrum disorders (ASD), as copied from their website.
In a nutshell, effective with the release of DSM-5 in May 2013 we will change the way we describe autism-related disabilities to the singular “Autism Spectrum Disorder.” Clients will no longer be diagnosed as having “autism” versus “PDD-NOS” or “Asperger Syndrome” as all of these different classifications will officially go away. However, individuals with ASD will be referred to as having one of three severity levels (see chart at end).
Individuals whose “severity” falls outside the bandwidth of these three levels but who exhibit significant social communication challenges will then possibly be diagnosed as having “Social Communication Disorder.” (See criteria for this diagnosis at the end of the blog). Dr. Amy Weatherby is the first speech-language pathologist to serve on the DSM-5 board and helped to craft the language of this newly defined category. It highlights those with social communication/social pragmatic challenges who do not exhibit the more “restricted, repetitive patterns of behavior, interests, or activities” which has been one of the diagnostic hallmarks of ASD. Other diagnoses which often overlap with people with social learning challenges (e.g., ADHD, nonverbal learning disorder, bi-polar, etc.) will also continue to be considered in the diagnostic mix of social, attention, and executive functioning symptoms.
What are my thoughts on this?
From the time my professional focus shifted to working with people with “higher level” social communication challenges, I struggled with the lack of diagnostic clarity when addressing this specific group of clients. For this reason I never aligned my work under any specific diagnostic category and in my writings and training sessions always referred to our students as having Social Cognitive Deficits. I now prefer the term Social Learning Challenges.
I have had the opportunity to hear two members of the DSM-5 ASD committee, Dr. Catherine Lord and Dr. Amy Weatherby, address audiences on the proposed changes. In both workshops they presented various research studies demonstrating the inability professionals experienced in distinguishing Asperger Syndrome, PDD-NOS, and Autism in a sub-group of our students. This certainly aligns with my observations.
That said, the proposed changes are significant and will affect not only the persons to whom the diagnostic labels are applied but also the funding allocation systems as well as service delivery systems. In the middle of all this change are the parents who are trying to determine what this means for their specific child(ren).
I won’t get caught up in the discussions about whether or not this shift is a good idea, but instead want to focus on what to do now that it appears these changes are coming our way.
What happens to all those individuals diagnosed with Asperger Syndrome? Will this descriptive label really go away?
None of us know the answer to this question for certain, but my best guess is that Asperger Syndrome as a diagnostic description, even if it is not officially included in the DSM-5, is here to stay. High functioning autism (HFA) has never been an official diagnostic descriptor sanctioned in previous or the current edition of DSM (DSM-IV) yet is a commonly used descriptor not only by us lay people but also by researchers who use it to define their study subjects. Furthermore, Asperger Syndrome is more than a diagnostic label; it has become a cultural identifier for many of our students and adults who recognize themselves as AS and have sought networks of support, friendship and collaboration within it.
What happens to those clients already diagnosed with Asperger Syndrome or any other label that currently is included as part of ASD? Will they need to be diagnosed again?
When I posed this question to one of the DSM-5 committee members the response was that every community will have to figure out how to address this question. State and local systems that serve our clients need to start getting organized NOW to figure out how they will handle this change!
What do you think about the term Autism Spectrum Disorder to describe such a heterogeneous population?
The autism spectrum is diverse, composed of people with different and varied learning abilities and disabilities. My greatest concern is how we as professionals and parents use this one term to describe a huge range in functioning. I have already seen researchers routinely describe their studies as focusing on “people with ASD” without the title of the study referring to functioning level. This is important because it leads to a homogenization of a heterogeneous population. This, in turn, may mean the treatments developed will become less sensitive rather than more sensitive to important factors such as language, cognition, sensory regulation, etc. Or that research neglects to study how these different functioning areas manifest in different levels within ASD or which treatments are better aligned to different subsets of this population. I have a similar concern for programs that operate within systems (private schools, clinics, and some public schools) which tend to create categorical classrooms or treatment programs based on the singular label of student (even though we all know this is not supposed to happen). People like to think in black and white terms and having just one diagnostic label, autism spectrum disorder, even when defined with three levels, is still a black and white term. For many, this may suggest (or give license to) viewing treatment in a way that so many parents and professionals have fought against for years: that there is a “one size fits all” treatment for ASD. This type of mindset is diametrically opposite of what this population needs to learn and grow within our education systems.
Will the change alter the number of people who will be funded to receive treatment services?
The DSM-5 committee’s proposed revisions will purportedly reduce the number of people diagnosed with Autism Spectrum Disorder but it also includes a new category through which they can potentially receive services.
There are two significant public funding models in the U.S. for students with social learning challenges.
One is allocated through state disability service departments that vary by name in different states. In California the funding flows through “Regional Centers,” in many states the funding flows through “Waiver” programs, and I am sure other states call this bucket of state and federal funding by a different name. This funding has never been based solely on a diagnostic label; there are criterion an individual must “pass” to be considered “disabled enough” to ultimately receive this type of funding. These past years have shown reductions in public funding and a tightening of who qualifies for these funds. The clients who will no longer be considered ASD under the new DSM-5 are the subgroup of clients who have not been guaranteed funding in the past given their “higher functioning” profiles.” At present it is completely unclear how those students who currently qualify under the existing diagnostic system will fare, and how state/federal departments managing these funds will handle this change. Also unclear is how these entities will announce policy changes to the public. It will certainly be costly to re-assess all individuals currently diagnosed with an ASD!
The second major funding stream flows through the public schools, for students who are eligible for IEP or 504 plan services. Public schools are required to independently assess a student’s learning abilities and disabilities to determine if a student is eligible for special education under one of the 13 eligibility categories. Not everyone recognizes that a medical professional’s diagnosis does not directly translate into school special education services in the form of an IEP, even though this is federal law. One of the school’s eligibility categories in each state is Autism or it may be “autistic like.” The kicker is that each state gets to decide for itself what the eligibility criteria are for that category. Hence, a student may be considered “autistic” in one state but not in another, depending on how the state defines it. When a student is qualified for services under an eligibility category, these services are not determined by the eligibility category itself but instead by the individual needs documented in the IEP written for that student. Therefore, once a student is eligible for services it really should not matter which category he or she qualified under. Services should be driven by individual need as determined by the IEP team.
These shifts ask us to take a two-pronged approach to meeting the needs of our students with social learning challenges:
+ State departments of education need to start considering if their state’s eligibility category descriptions need to be revamped in light of the proposed DSM-5 changes. I know some states have eligibility descriptions that align directly with the DSM-IV while other states, such as California, never changed their eligibility categories with the recognition of Asperger Syndrome in the DSM-IV.
+ While it is clear that each state’s school district personnel will continue to determine if a student qualifies for services under these eligibility categories, we must recognize that school professionals can be influenced by the diagnostic reports from medical professionals in their community. To this extent, each state needs to proactively determine how to address and serve students who will now be diagnosed with the entirely new diagnostic category, Social Communication Disorder. If a student with that diagnosis qualifies for an IEP, what is the best education eligibility category to place that student in? Will schools modify their categories to include Social Communication Disorder (or SCD)? What it likely means is that even more students will be referred for speech and language services in the schools without the possible benefit of an “autism specialist.” Or perhaps schools will rid themselves of the term “autism specialist” and place students under the jurisdiction of “social communication specialists” to keep the door open so this broad range of students still receive some vital services to address their social communication challenges in the mainstream classroom, on the playground, etc.
How will this impact coverage for private services by insurance companies?
Insurance companies in some states are being mandated to provide services for children with ASD. It is likely that these insurance companies will take a definitive stance in refusing to cover services such as ABA therapy for those who are not “ASD” under the new definition. However, consider that many (not all, but most) clients who don’t fall into the DSM-5 ASD category are less likely to need the ABA model of treatment as they have developed language and need to learn a more complex (synergistic) set of communication skills that are beyond the more linear stair-stepped approach offered by traditional ABA programs.
Many insurance policies will consider covering a student who has mental health needs or social communication needs if the therapist can document the need for services and the benefit from services. However, insurance companies don’t cover anyone enthusiastically and they will try to find reasons (very often, not always) for refusing services. One significant issue with our clients is that insurance is very unlikely to cover our students as they transition into adulthood or live as an adult, as non-ASD neurodevelopmental disorders are not easily covered into adulthood, even though our students are showing great benefit from treatment as they transition and live as adults.
How might the shift to Social Communication Disorder change assessment and treatment strategies?
It is my best guess that students diagnosed with Social Communication Disorder (SCD) will be referred to a speech-language pathologist as the first level of services. This is also fairly routine for students with ASD, so this is not all together a “new” idea. However, right now those with higher level ASD often have behaviorists included as an integral part of their treatment plan, often as case managers, and this may not be the case with those diagnosed with SCD. This means that a lot more students will receive SLP referrals with the SLP becoming the primary case manager. Our national and state organizations for SLPs need to get organized NOW and determine how to handle this influx of attention on SLPs as primary treatment providers for students diagnosed with SCD. Currently there are many SLPs who have taken a strong interest in the more complex, subtle yet significant social learning challenges of this population. But there are also many in our field who want little or nothing to do with this type of student.
The SCD diagnostic descriptor identifies individuals with global social communication issues, not just students with challenges in social language. This means our assessment procedures will also need to change to account for nonverbal social pragmatic challenges. Currently most standardized assessments are based on Social Language competency and fail to evaluate how one effectively reads nonverbal cues from the context as well as the body and face of others. We do not presently have standardized tests to assess how one codes his or her own nonverbal behavior. In California, our state Speech and Language Association has not updated the manner through which we can qualify students for speech and language disabilities since before the DSM-IV was written. There is no recognition of a pragmatic social communication sample when standardized tests fall short.
Will Social Thinking be impacted by these changes?
Given that the methodologies created around Social Thinking have never been dependent on using diagnostic labels to clarify service delivery, utilizing Social Thinking to help provide treatment ideas for those with level 1 ASD and SCD and other related social learning challenges will continue to be a good choice.
Furthermore, the Social Thinking-Social Communication Profile™ may provide extra assistance in our community to continue to define students’ social learning needs beyond the more basic definitions provided in the DSM 5. (Find a free article about the ST-SCP on our website, under the heading, “What’s Social Thinking.”) Levels 1,2, and 3 on the new ASD definition align fairly closely if not exactly with social mind levels on the ST-SCP, “Significantly challenged Social Communicator” (Level 3); Challenged Social Communicator (Level 2), and Emerging Social Communicator (Level 1). However our scale goes on to describe students with higher level social communication challenges (Resistant Social Communicator and the Nuanced Challenged Social Communicator). It is these students who most likely, with the release of DSM-5, will be referred to as having Social Communication Disorder.
Within our ST-SCP we also talk in more detail about the social–academic, anxiety, and executive functioning challenges of these different groups. These categories were created in response to our perceived need to provide more clarity in the service delivery system. Our profile can continue to help define services for all in need as it will continue to focus on the spectrum of social learning needs rather than just look at the spectrum of autism.
How can we be proactive about all this change?
A clever friend and talented school psychologist, Dr. Kacey Chandler, is recommending that diagnostic reports now being written to assess students/clients not only provide the relevant DSM-IV diagnosis but also explain what the diagnosis should be given the DSM-5. This will help avoid the need to re-assess the same students again after the 2013 changes. I thought that was quite astute of her!
I also recommend that you contact your local and national professional organizations to encourage them to let their constituents know how they advise handling these changes within their own profession.
It is also important that local and federal funding agencies (schools, insurance companies, access to funding for disabilities) be proactive in developing a plan for how to manage the shift in diagnostic labeling. Families and care providers are anxious to know how each agency will handle this and if they will require re-assessments of persons currently qualifying for funding, how they will go about this process.
State Departments of Education will also have to review their current eligibility category for students with “autism” to decide if it needs to be updated in light of these anticipated changes; if so they should do this now! They also need to discuss how they will incorporate students with Social Communication Disorders into the IEP eligibility system and communicate this with the public.
It is unclear how other disciplines will formulate plans for this shift and acquire the necessary skills for working with ASD and SCD students. The teaching of social pragmatics, the development of the social mind as it relates to the growth of perspective taking, and assessment of the social context are not typically part of the educational curriculum for mental health or related services professionals. Whether we call our students ASD or SCD, they are an increasingly prevalent part of caseloads across a range of professionals inside and outside our educational system. Even though we may describe these students as having “mild” social skills problems, their challenges nonetheless deserve our attention and forethought. University programs that prepare educators and related service professionals need to explore how they can adjust their curriculums to address this growing population and help soon-to-be educators, SLPs, behaviorists, counselors, psychologists and other professionals better understand the needs of our higher functioning students and their significant challenges.
The reality is that our more obviously challenged social communicators are easily identified not just by specialists but by the public as having serious social learning difficulties, meaning we, the observers, tend to readily shift our social expectations and make accommodations for this group. However, our clients who miss subtle social cues and who may not code their social behavior with nuance are not generally identified by their peers (or many professionals) as having a neurologic learning challenge. They are held to the same high social expectations we have for all our peers. This group is at the greatest risk for making subtle social errors for which they are blamed or at minimum, lead others to have uncomfortable thoughts about them. These clients can, in turn, “read” that they are not easily accepted by others even when they have strong social desire, leaving them at a significantly increased risk for severe social anxiety and/or depression. Whether we are parents of these individuals, or the professional caregiver, our goal is to be able to more seamlessly recognize their challenges, understand their needs, and offer appropriate treatment. Cognitive behavioral therapy with Social Thinking and social anxiety management strategies appears to be a promising practice in achieving that goal.
The upcoming changes in DSM-5 will certainly impact our students, how they are educated, and the service delivery systems that support them and their families. My hope is that we arrive at May 2013 reasonably prepared to handle this shift from all fronts.
American Psychiatric Association DSM-5 Development
(Retrieved from www.dsm5.org)
Autism Spectrum Disorder
Must meet criteria A, B, C, and D:
A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
1. Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4. Hyper- or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)
D. Symptoms together limit and impair everyday functioning.
Severity Levels for ASD
Severity Level for ASD
Restricted Interests & repetitive behaviors
‘Requiring very substantial support’
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning; very limited initiation of social interactions and minimal response to social overtures from others.
Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.
‘Requiring substantial support’
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.
RRBs and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.
Without supports in place, deficits in social communication cause noticeable impairments. Has difficulty initiating social interactions and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.
Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.
Social Communication Disorder
A. Social Communication Disorder (SCD) is an impairment of pragmatics and is diagnosed based on difficulty in the social uses of verbal and nonverbal communication in naturalistic contexts, which affects the development of social relationships and discourse comprehension and cannot be explained by low abilities in the domains of word structure and grammar or general cognitive ability.
B. The low social communication abilities result in functional limitations in effective communication, social participation, academic achievement, or occupational performance, alone or in any combination.
C. Rule out Autism Spectrum Disorder (ASD). Autism Spectrum Disorder by definition encompasses pragmatic communication problems, but also includes restricted, repetitive patterns of behavior, interests or activities as part of the autism spectrum. Therefore, ASD needs to be ruled out for SCD to be diagnosed.
D. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities).
Courtesy of SocialThinking.com