David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment
David: I learned of Autism New Jersey (formerly COSAC) in the late 1980s and have seen it grow steadily in size and impact over the last 30 years. How would you describe Autism New Jersey to our readers?
Suzanne: Autism New Jersey (ANJ) is a nonprofit agency committed to ensuring safe and fulfilling lives for individuals with autism, their families, and the professionals who support them. It was established in 1965 by a dedicated group of parents. We view our mission from a framework of four pillars: awareness, information, education, and public policy. We strive to be a valuable resource to both families and professionals–one where they know their questions will be answered in light of what research supports as best practice, empowering them to make informed choices about intervention that will be most helpful to their loved one or student/client. You don’t need to be a resident of New Jersey to take advantage of our services.
David: What is your current role within ANJ?
Suzanne: As Executive Director, I am charged with leading the staff to accomplish the goals of our vision statement: “We are GROUNDED in science, STRENGTHENED by knowledge and DEVOTED to creating a society of compassion and inclusion for all those touched by autism.” With my background as a psychologist and behavior analyst, I began as Clinical Director 19 years ago. Though I no longer provide direct service to individuals with autism, I uphold the clinical standards of the field through everything the agency does (e.g., our Helpline responses, conferences and trainings, publications, public policy initiatives). Over the last ten years, my clinical knowledge, curiosity and ideas about how state service delivery systems could improve, and relationships with politically savvy individuals coalesced into a more formal lobbying role to advance legislation and regulation in the best interest of the autism community. Our main priorities in Trenton are the development of a strong, skilled workforce (through job standards, licensure, and reimbursement rates) and the provision of and financial coverage for evidence-based treatment, especially for individuals with autism and severe challenging behavior.
David: What are some of ANJ’s proudest accomplishments?
Suzanne: I am proud of all that our hardworking, passionate team has accomplished, especially considering that we are a staff of 15! To highlight just a few aspects, I’ll start with the Autism Ambassador program we offer every April. This year, more than 1,000 ambassadors used our free materials, support, and networking to share the theme of “Choose Kindness” in so many ways to increase, not just awareness, but compassion and understanding in local communities. Our Helpline assists approximately 2,000 people per year who reach out to 800.4.AUTISM or firstname.lastname@example.org. We connect 25,000 followers through social media and have 250,000-page views per year of our website. We offer two well-respected conferences that draw a total of approximately 2,000 attendees per year – one addresses the entire lifespan and the other is exclusive to the transition to adulthood. In the public policy domain, we provided the Department of Banking and Insurance with the clinical substantiation for the medical necessity of applied behavior analysis (ABA) for adults with autism. As a result, in 2014, New Jersey was one of the first states to remove the age cap of 21 on the insurance mandate, allowing adults with autism with fully insured plans to have insurance coverage for ABA during their adult years. A year or so later, we expanded our reach to publicly funded insurance as we established an ABA Advisory Committee for a state agency that oversees ABA services for children with developmental disabilities under a Medicaid waiver. We are also working diligently to educate state officials about the types of treatments that should and should not be covered under Medicaid’s EPSDT benefit.
David: What are some of ANJ’s greatest challenges?
Suzanne: As with most nonprofits, resource limitations are always a challenge. There is much more we would jump at the chance to do for the autism community with additional resources to increase our staff and capacity. The same is true when advocating for greater statewide access to evidence-based practices to treat autism. Despite the long-term financial savings and moral imperative to 1) provide early and intensive behavioral intervention to young children with autism and 2) intervene as early as possible in the chain of events that lead to severe challenging behavior, state officials are often tied to annual budget expenses and goals. The state’s financial limitations are an ongoing challenge for state officials and advocates alike.
David: What suggestions do you have for parents of newly diagnosed children?
Suzanne: This can be such an overwhelming time for families. We want them to know they can reach out to Autism New Jersey for both practical and emotional support. We are available as a starting point and as questions or issues arise. Our publication “Start Here: What Families Need to Know” (available in both English and Spanish) is a great starting point for understanding what autism entails, educational rights, possible state services, and how to evaluate hundreds of treatments marketed to parents. Our Helpline staff are happy to discuss these and any other autism-related topics. New Jersey residents may wish to access our online database of service providers if they are looking for, say, a speech therapist in Essex County or a dentist skilled in working with individuals with ASD. We are here to help them prioritize next steps and understand how to most effectively support their child.
David: New Jersey is blessed to have ANJ to support the autism community. Do you collaborate with other states? In what ways?
Suzanne: Autism New Jersey doesn’t have any formal collaborations with organizations in other states, but we do occasionally partner with some on specific projects. We have great relationships with other national groups such as Autism Speaks, the Association of Professional Behavior Analysts, and of course, ASAT. We also have in-state partners such as the New Jersey Association for Behavior Analysis and their workgroups for adult services, early intervention, insurance/business practices, and public schools; the New Jersey Psychological Association; and disability provider organizations. We’ve learned a lot of lessons from our helpline, training, and public policy efforts and would be happy to connect with and learn from other groups doing the same.
David: We are very grateful for your many years of support. What drives your support for ASAT?
Suzanne: Given our shared commitment to safe and effective autism treatment, Autism New Jersey and ASAT are natural partners. David, our early collaborations set a firm foundation of respect and admiration for your work. Through your role on my dissertation committee, the ABAI Autism SIG and its guidelines for consumers, and the revision process for an article written to give parents and professionals a scientific perspective on autism treatment as well as specific questions to become better informed and hold providers accountable to their claims, I gained a deep appreciation for your intellect and passion. I like to think we’re cut from the same cloth and still very much value your mentorship. From an agency perspective, we frequently share your research summaries with those inquiring about specific interventions. ASAT’s participation in our conferences has been a valuable component, and we appreciate your support of our advocacy efforts to increase the quality and capacity of service provision. Building on our years of productive collaboration and shared passion, we look forward to continuing our partnership to increase the quality of life for all individuals with autism.
Thank you kindly for participating in this interview and for your many years of sponsorship! See you in Atlantic City in October. I am looking forward to the conference.
Citation for this article:
Celiberti, D. (2019). An interview with Dr. Suzanne Buchanan, Autism New Jersey. Science in Autism Treatment, 16(8).