The A.J. Drexel Autism Institute formally launched at Drexel in 2012 as the first autism research center in the country focused on public health science. Since then, the Institute's faculty and staff have been hard at work developing programs and partnerships within the University and in the community, preparing for the move to the official Institute and clinical office space, the delivery of the mobile outreach and assessment unit, launching an autism public health lecture series and much more.
Dr. James Connell, who joined Drexel last year as the clinical director of the Institute, caught up with DrexelNow about some of the clinical components of the Institute's plans.
With a background in intervention and dissemination science, school psychology and applied behavior analysis, and a faculty appointment in Drexel's School of Education, Connell will oversee the institute's clinical capacity, and will develop models that effectively disseminate evidence-based interventions into the community. These efforts will bridge intervention and dissemination science, and community-based systems consultation into health care settings to meet the needs of individuals on the autism spectrum at all ages.
Can you tell us a little bit about the adult clinical consultation that the A.J. Drexel Autism Institute is involved in with mental health providers? What types of cases are you asked to consult on? How might this case consultation model scale up to reach a larger population?
The A.J. Drexel Autism Institute has begun a consultative relationship with several mental and behavioral health provider agencies in the state. Research gathered by the Pennsylvania Bureau of Autism Services’, Autism, Service, Education, Resource and Training Collaborative (ASERT), shows that there are many gaps in services for transition-age youth and adult populations who are aging out (or aged out) of the education system. Those gaps in related services hit especially hard for adults who have the severe impairments, some with co-morbid mental health disorders and/or behavioral health needs and intellectual disabilities. In some cases, the most-impaired adults on the autism spectrum are being treated in inpatient mental health facilities, or in one-person group homes with two or three round-the-clock staff, and significant medication regiments that may have little effect on the targeted symptoms.
Based on the multi-disciplinary consultation model Lindsay Lawer (AJ Drexel Autism Institute senior manager and eastern ASERT director) and I developed, these organizations meet with us every week for 2-3 hours in a case consultation that focuses on creating comprehensive medical/behavioral treatment packages. Furthermore, our model builds internal staff capacity by providing a case conceptualization framework that capitalizes on the strengths of social work, psychiatry and behavior analysis within a systems change perspective. Many of these consumers have the highest needs and often incur the highest costs of care, with little hope for desirable quality of life outcomes.
With support from our interdisciplinary team, which includes Jennifer Plumb (AJ Drexel Autism Institute outreach director) and Ted Brodkin (ASERT partner), the agencies are able to implement effective comprehensive treatment packages with a focus on enhancing quality of life, access to a larger social environment, and when possible, employment opportunities. We find that combing the medical model with behavioral psychology in a multidisciplinary case consultation process that sophisticated treatment packages can be designed to meet the needs of the individual, often times with less medication and therefore fewer unwanted side effects. This not only leads to more responsive care with a focus on the individual and a real, holistic person-centered approach, but in many occasions is more cost efficient.
As for scaling up our consultation model, that is one area that we are going to research. We need to think about how this case consultation model could be disseminated most effectively. We need to consider what types of outcomes are measureable, quantifiable indicators that our intervention led to an improved quality of life. Is it reduced need for medication? A greater measure of independent life management? We’re working that out.
Adults on the autism spectrum and adolescents transitioning into adulthood seem to be an area of particular emphasis in your work at the institute. Broadly, what are some of the challenges facing individuals in these age groups?
The Eastern Region’s ASERT recently published the Pennsylvania Autism Needs Assessment. The data collected indicate that one of the biggest issues facing adolescents transitioning to adulthood is what’s known as the “services cliff.” That is, educators and clinicians alike historically focused on early childhood assessment and intervention with many services provided by the education system, or referred via education. However, once individuals leave high school, it becomes much harder for families and individuals to coordinate care, or find pathways to services like employment and vocational opportunities. For adolescents who wish to continue with postsecondary education, there are far fewer supports built into college life than there are in the K-12 system – even though the social adjustment of starting college and adjusting to the less-structured expectations of college life can be a bigger challenge for young adults on the autism spectrum.
Were there any findings from Washington University’s Dr. Paul Shattuck, a guest speaker at the inaugural Autism Public Health Lecture, that made you think differently about what the A.J. Drexel Autism Institute can offer to this population?
Several things struck me from the data Dr. Shattuck reviewed from a long-term, large survey he is doing, tracking adolescents with autism spectrum disorders as they age out of the educational system and transition to adulthood.
One is how vital community colleges are for large numbers of young autistic adults. Dr. Shattuck described community college as the “gateway to college experience.” He reported that 80 percent of the youth on the autism spectrum in his study who went to college, at least initially attended a community college. From a population standpoint of offering services to help young adults make that particular transition, it makes sense to target efforts there. In Pennsylvania, we found a handful of private universities (including Drexel) offer social and academic support to college students on the spectrum. The Eastern ASERT held a post-secondary education conference last year. To begin the process, we investigated which Pennsylvania colleges and universities offered supports for students diagnosed with an ASD. We only found a few, and invited Drexel, Mercyhurst, Eastern and St. Joe’s to present at our conference. We then invited approximately 50 Pennsylvania colleges and universities interested in developing programs for college students. The conference was very-well received and many of the universities went back to their programs and departments to begin the good work of developing academic and social supports for young adults with an autism spectrum disorder so that college life is more easily navigated.
Another striking point is how difficult it is to enter the employment market for many young adults with an ASD. Only 55 percent of young adults had any paid employment in the first few years after high school, in Dr. Shattuck’s surveys. That’s a significant percentage of young adults who are willing and able to work, but are unable to obtain any employment. They represent a vast need to improve employment training services, for both the young adults with autism spectrum disorders, and for the employers who may shy away from hiring autistic employees.
What is “customized employment?” What role is Drexel playing in the dissemination of customized employment opportunities in the region?
Customized employment (CE) is a particular approach to job creation for people with disabilities, including autism spectrum disorders, that takes into account an individual’s strengths and needs. In some places it’s also called “job carving.” People with autism spectrum disorders aren’t all the same—so a one-size-fits-all approach to jobs is not going to work very well. In some cases, adults with an ASD end up with the low-paying, low-skill jobs, even though they may have some unique strengths and abilities that could benefit small and large businesses. Customized employment is a method of evaluating an individual job seeker’s strengths and accommodation needs and, based on that, creating a customized job plan with an employer.
Our ASERT team is coordinating training in customized employment for several large human services organizations in the region, and over the course of this spring will provide ongoing consultation to these agencies so that rewarding, competitive and customized employment opportunities are available to all of us. The goal is to create a network of agencies that are empowered with customized employment skills, so they can have a sustained dialogue with one another to improve the implementation of custom job creation, and help others begin to implement CE at a larger scale over time.
You hold a credential as a Board Certified Behavioral Analyst, and have proposed an Applied Behavior Analysis (ABA) master’s and certification program in the School of Education that could begin as soon as soon as this fall if approved by the Faculty Senate. What is ABA and can you tell us more about your plans for Drexel’s program?
Behavior analysis is the scientific study of behavior from an ecological perspective. That is, our first assumption does not assume pathology, but rather that the environment and the individual interact in such a way that the behavior may be a function of learning. Applied behavior analysis is the study of human behavior from an ecological perspective. In other words, which environment arrangements set the occasion for a specific behavior, or behavioral repertoire to occur and how the environment sustains that behavior. That’s a complicated way of saying we learn from interacting with the world. And said like that, I think most people agree that is just common sense; people learn from doing stuff.
Most ABA programs train people to use ABA techniques in the education or early intervention systems. Drexel’s ABA program would be what I call “a next-generation ABA program.” In addition to working in educational settings, we’d prepare graduates to work with the adolescent and adult autism populations. We’d also emphasize preparation to work in mental health and clinical settings, and preparing our students to work as collaborative members of multidisciplinary care teams that address both physical and mental health needs of patients in clinical settings.
The program will have clinical practicum opportunities, so students will be able to work with real-world populations, including with the mental health providers who already partner with us for adult clinical consultations.
Are there any important points about autism in today’s society that you feel people should know?
The prevalence of autism has increased at a rapid and dramatic pace over the past 15-20 years. The Pennsylvania Autism Census reported that in 2005, 56 percent of individuals with autism in the state of Pennsylvania were between the ages of 5 and 12 years. It’s now almost eight years later and that enormous wave of students moved through the education system those students are now “aging-out” of the education system, which means a significant reduction in supports and services. Given the complex nature of the disorder, I think it is very important to expand the nationwide conversation about what autism is and is not, and how individuals with autism can and want to participate in society like the rest of us.