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Autism 101 and 200 Series – 2019 Schedule

We are pleased to announce the dates of our quarterly Autism 101 classes and a brand new line up of the Autism 200 Series lectures for 2019

Autism 101 is a free lecture intended for parents and families of children recently diagnosed with an autism spectrum disorder (ASD). There is no need to register in advance to attend.

Lectures are held at Seattle Children’s Hospital’s main campus in room RC.3.905 near the River entrance unless otherwise noted. Parking at Seattle Children’s main campus is free in Lot 1 for those who attend the lecture in person.

2019 Class Schedule:

  • Jan. 24, 2019
    7 to 8:30 p.m.
    Presenters: Dora Hall, ARNP and Rachel Earl, Ph.D.
  • Apr. 25, 2019
    7 to 8:30 p.m.
    Presenters: David Camenisch, MD and Sandy Trinh, MS
  • Jul. 25, 2019
    7 to 8:30 p.m.
    Presenters: Lindsey Miller, ARNP and Anita Wright MS CCC-SLP
  • Oct. 24, 2019
    7 to 8:30 p.m.
    Presenters: Felice Orlich, Ph.D. and David Eaton, ARNP

Autism 200 is a series of 90-minute classes for parents and caregivers of children with autism who wish to better understand autism spectrum disorder. Faculty from Seattle Children’s and the University of Washington and community providers teach the classes. Each class includes time for questions. 

Classes are held on most third Thursdays of the month from 7 to 8:30 p.m. Pacific time and can be also be viewed on Facebook Live.

2019 Series Schedule:

  • Autism 201: The State of Autism in 2019
    January 17, 2019
    Instructor: Jim Mancini MS, CCC-SLP
  • Autism 202: Best Practices in ASD Treatment: Applied Behavior Analysis Update
    February 21, 2019
    Instructors: Mendy Minjarez, PhD and Elizabeth Hatzenbuhler MS, BCBA
  • Autism 203: The Visual Pathway in ASD: Explicit Teaching Methods to Promote Social Communication
    March 21, 2019
    Instructor: Georgina Lynch, PhD
  • Autism 204: Perspectives on Psychiatric Treatment of Autism Spectrum Disorder
    April 18, 2019
    Instructor: Hower Kwon, MD
  • Autism 205: Gender Diversity and Autism: Exploring Identity, Healthcare & Advocacy
    May 16, 2019
    Instructors: Felice Orlich, PhD and Rachel Earl, PhD
  • Autism 206: Transition to Adulthood: “My physical body and mind started shutting down”: Autistic burnout and the costs of coping and passing
    July 18, 2019
    Instructor: Dora Raymaker, PhD
  • Autism 207: Transition to Adulthood: Abuse and Neglect of Adults with Developmental Disorders
    August 15, 2019
    Instructor: Rachel Loftin, PhD
  • Autism 208: Crisis Support and Autism for Complex Behavioral and Mental Health Needs
    September 19, 2019
    Facilitator: Eric Boelter PhD, BCBA-D
  • Autism 209: Autism Care Planning: Recommended Interventions, Resources and Support
    October 17, 2019
    Instructor: Karen Sporn, ARNP
  • Autism 210: A Panel Discussion: Perspectives from the Autism Community
    November 21, 2019
    Facilitator: Gary Stobbe, MD

Science with Sara- Diagnosing ASD with the DSM-5

In this post, I discuss the study Mazurek et al. (2017). A Prospective Study of the Concordance of DSM-IV and DSM-5 Diagnostic Criteria for Autism Spectrum Disorder. I then chat with three of our clinical and research leaders at the Seattle Children’s Autism Center – Dr. Soo Kim, Dr. Raphael Bernier, and Dr. Gary Stobbe – about how the new criteria for Autism Spectrum Disorder in the DSM-5 have impacted clinical and research practices.

Background References: The Diagnostic and Statistical Manual of Mental Disorders

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is published by the American Psychiatric Association. For a brief history of the DSM: See the American Psychiatry Association Website (DSM History) or Shorter (2015). For a brief history of the DSM related to autism diagnosis, see King et al. (2014). The current DSM-5 criteria for Autism Spectrum Disorders can be found on the CDC website. Generally speaking, the DSM is meant to give clinicians and researchers concrete descriptions of behaviors and difficulties (which are called “diagnostic criteria”) for various diagnoses, so that they can apply those diagnoses in a more consistent and reliable way. Every so often, those diagnostic criteria are reviewed and updated by experts in the field using the knowledge that’s been gathered in recent years. There were four important changes that came about with the DSM-5 during the most recent update: First, the DSM-IV, under the heading of Pervasive Developmental Disorders, included the sub-categorization of Autistic Disorder (AD), Asperger’s Disorder (ASP), and Pervasive Disorder-Not Otherwise Specified (PDD-NOS). Thus, children with autism features were grouped into one of three different sub-categories based on symptom presentation and their development early in life (e.g., whether they’d had delays in language development). In the DSM-5, a single diagnosis of Autism Spectrum Disorder (ASD) is used.

Second, the criteria within the autism diagnosis changed from three domains ([1] social interaction, [2] communication & [3] restricted repetitive and stereotyped behaviors) to two domains ([1] social communication and social interaction; [2] restricted, repetitive behaviors). This change reflects an understanding that difficulties or unique use of language may be a key part of social communication but also can be part of the restricted or repetitive profile of children with autism.

Third, sensory difficulties were included in the restricted, repetitive behaviors domain. As reviewed in Robertson & Baron-Cohen (2017), sensory difficulties have been a significant issue for individuals with autism for a long time, but in the past were considered secondary to the social differences and weren’t included in the diagnostic criteria. As part of the DSM-5, sensory traits are considered a core or primary issue in autism.

Lastly, severity of symptoms is now specified in the DSM-5. Why? From a research perspective, findings from a decade of research had suggested significant behavioral overlap in the DSM-IV subcategories, poor predictive relation between early diagnostic category and later ability, and there was little relation to treatment approach or genetic etiology.

A Prospective Study of the Concordance of DSM-IV and DSM-5 Diagnostic Criteria for Autism Spectrum Disorder

In the Mazurek et al. study, the authors investigate how the criteria from the DSM-5 (published in 2013) versus the DSM-IV (published in 1994) impacts eventual diagnosis. To do this, across multiple clinical locations, the authors enrolled 439 children (aged 2 to 18 years) who were receiving a (first time) autism diagnostic evaluation. The clinicians used a standard protocol for diagnosis across sites, which included the ADOS (Autism Diagnostic Observation Schedule, a standardized clinician-child interaction) and cognitive and adaptive skills evaluations. After all clinical information was collected, the clinician evaluated the child’s behaviors using the DSM-IV and DSM-5 diagnostic criteria. For each patient, some clinicians filled out the DSM-5 first, and others filled out the DSM-IV first.

In 93% of the cases, there was agreement between both versions of the DSM about whether the individual did or did not have a clinical diagnosis of autism. More specifically, for 248 patients, there was an agreement in both systems that the individual had autism; and for 160 patients, there was an agreement that the individual did not have autism. For children who received a diagnosis of Autistic Disorder (via the DSM-IV), there was a strong likelihood of being given a diagnosis of ASD (via the DSM-5).

Table 1. Concordance / Discordance for the DSM-IV and DSM-5 checklists

Total Patients

N=439

DSM-IV

YES- Diagnosis of AD, ASP or PDD-NOS

DSM-IV

NO- Diagnosis of AD, ASP or PDD-NOS

DSM-5

YES- Diagnosis of ASD

248

1

DSM-5

NO- Diagnosis of ASD

30

160

However, there were 31 patients where the DSM-IV and the DSM-5 did not agree, most were individuals who were diagnosed with the DSM-IV but not the DSM-5 (n=30). Children who were discordant for diagnosis were more likely to be older, score higher on IQ tests, or be female. Of the 30 children who met criteria on the DSM-IV but not DSM-5, many received other diagnoses. Alternative diagnoses included ADHD, Anxiety Disorder, Social Communication Disorder, and Global Developmental Delay or Intellectual Disability. In summary, agreement was very high overall, but individuals who might have been diagnosed with ASP or PDD-NOS under the DSM-IV, were less likely to receive an ASD diagnosis with the DSM-5.

One benefit of the DSM-5 was consistency across clinicians and sites. Both the Mazurek et al. study and another multisite study (Lord et al., 2012) suggest that it was difficult for clinicians to reliably decide between DSM-IV subcategories. That is, even highly trained clinicians, using the same evaluation measures, did not provide the same DSM-IV sub-diagnosis. One interpretation is that the DSM-5 criteria and lack of sub-categories is more reliable across clinical communities.

Does the DSM-5 change the criteria for the diagnosis autism? The simple answer is yes. But each update of the DSM has changed the diagnostic criteria for autism, and there has been substantial change from the first published case studies in the 40s to our current criteria. Ideally, each set of changes improves how the DSM works for clinicians, researchers, individuals with ASD and families so that it captures ASD more and more accurately.

Implementing the DSM-5 at Seattle Children’s Autism Center.

To find out more about the impact of the DSM-5, I’ve asked 3 of our clinical/research leaders to weigh in on how this has impacted their clinical practice and research programs.

(1) In moving from DSM-4 criteria to DSM-5 criteria, what has changed in your clinical assessments?

“I would say one change when I do clinical evaluations is the consideration of sensory differences in category of repetitive behaviors/restricted interests. Most impactful, I think, is the better characterization of individuals – getting rid of Asperger’s/PDD-NOS and adding the inclusion of with or without co-occurring intellectual disability and language impairment has been useful in communicating to the family and to other providers.” – Dr. Gary Stobbe

 “I agree with Dr. Stobbe about DSM-5 vs. DSM-IV. While individuals with PDD-NOS were grandfathered into DSM-5 ASD diagnosis, PDD NOS was applied very differently based on the clinician and the clinic.” – Dr. Soo Kim

(2) What have been the biggest challenges for families or advocates related to the diagnostic criteria change? 

“I think, on the negative side, has been in accessing services through the Developmental Disabilities Administration (DDA). With DSM-5, the DDA is now also requiring IQ criteria to access DDA services, which can be challenging. Although in some ways, DSM-5 it is an improvement, as the DDA did not accept the DSM-IV subcategories of PDD-NOS or Asperger’s.” – Dr. Gary Stobbe

 “I’d agree that the biggest issue is that state servicing guidelines currently don’t directly follow along with the DSM-5 and at times that can result in additional steps that have to be taken to access services.” – Dr. Raphael Bernier

 (3) Has the DSM-5 changed the way you do research?

“I’m not sure it has changed my research at all. Most research continues to use the ADOS (a clinician – patient interaction) and ADI (a clinician – parent interview) to confirm diagnosis, so there has been consistency in the “gold standard” measurement of autism symptoms. But the change has set the stage to think about subgrouping based on biology instead of further searching for behaviorally defined subgroups.” –Dr. Raphael Bernier

“In regards to research, depending on the type of study, changes in diagnosis criteria definitely impact on inclusion/exclusion. Who gets into research will change if you require participants to have a clinical diagnosis before enrollment. — Dr. Soo Kim

References

 

Killer Fried Chicken: A young man with autism shares his secret recipe for life

Andrew’s Secret Spice Blend. My son’s superpower is his ability to become an expert on any subject he takes a special interest in. After performing his first cooking demonstration in the first grade, he dreamed of becoming a chef. Now 25 years old, Andrew—a young man with autism—works part-time as a prep chef in a commercial catering kitchen. During his free time he researches his favorite foods, hunting through cookbooks, magazines, cooking shows, and the internet for recipes. His current fascination with Colonel Sanders and Kentucky Fried Chicken has led him to collect all things having to do with their crispy, crunchy, flavorful crust.

Read full post »

Autism Spectrum Disorder (ASD): A Different Coming Out

Lisa L Wasikowski is an ASD self-advocate who lives in the Seattle area with her husband and daughter.  We are grateful for her generosity in sharing her personal journey, insight, and reflections with Autism Blog readers. 

Someone asked me to describe my ASD “coming out story”. Well, this is effectively it.  I’ve told a handful of people, and currently wonder how to deal with regrets.  When you’re the kind of person who lives as an open book, something like this won’t stay secret for very long, and since some people know, and people like to discuss, I’m sure it’s leaked beyond my pool.  Now, it’s in the public eye of discernment.  Take it for what it’s worth to you, and kindly move on.  Read full post »

Celebrating 10 Years at the Autism Center – A Trip Down Memory Lane

As we celebrate the 10 year anniversary of the Seattle Children’s Autism Center being open, Dr. Gary Stobbe shares his reflection on the evolution of our programs and his hope for the future:

I think back to when the Seattle Children’s Autism Center was first launched in 2009, I still remember one of our first staff meetings where clinicians from backgrounds in psychology, psychiatry, neurology, developmental pediatrics, and speech therapy were all in attendance. All of us had been providing services for people with autism, but we had been doing the work in “silos.” We had dreamed of the day of working as a team, learning from each other, and coordinating care for people and families impacted by ASD. When that day was realized, it was an even better experience than we had imagined! The complexity of ASD makes this multidisciplinary approach to care essential, and Seattle Children’s Autism Center was built with this in mind. Since our beginning, we have welcomed over 4500 families through our doors, offering over 22,000 visits annually.  

Another important feature in autism care is recognizing that support needed often falls into the “uncompensated” care category. This uncompensated care is one of the reasons why Seattle Children’s is the organization in the Pacific Northwest best suited to provide autism care, as this is at the heart of Seattle Children’s mission. Partnering with our community through philanthropy and outreach means that we are on this amazing journey together, providing care for all people regardless of their ability to pay.   We simply would not be where we are today without the belief, commitment and support from our community, and for that, we are eternally grateful.

We are fortunate that ASD care seems to draw a special type of service provider and clinician. The teamwork, the willingness to go the extra mile, the positive attitudes, and the unselfish goal of providing service and care to those in need, all bring the staff at Seattle Children’s Autism Center closely together. We feel privileged with the gift of being invited into the lives of so many individuals and their families.

In 10 years, we have accomplished so much together, yet we have so much unfinished work still ahead. I have seen so much progress towards the goal of getting everyone with ASD the care they need, yet we clearly have not met many of our goals, including the most glaring challenge of access to diagnoses in a timely fashion. Initiatives underway to address the unmet needs excite me as much as when we first launched Seattle Children’s Autism Center. I feel the future is brighter than ever, and I am thrilled to be on this journey with my colleagues, the families, and our amazing Pacific Northwest community!

A special acknowledgment and heartfelt thanks to the following staff who have been with us at the Autism Center since the very beginning;

  • Carola Meyer
  • Anita Wright
  • Jen Mannheim
  • Amber Persons
  • Katrina Davis     
  • Gary Stobbe
  • Jan Bersin
  • Felice Orlich
  • Dora Hall
  • Stephanie Pickering
  • Lindsey Miller
  • Mariam Araujo
  • Sara Webb
  • Raphe Bernier
  • Deb Gumbardo