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Doctoral Candidate Talks Unique Traits of Individuals with Autism

July 11, 2014

Autism Speaks Staffer Kerry Magro interviewed Amanda Leeder to discuss her work as a doctoral candidate in Fordham University’s Applied Developmental Psychology program. Amanda received her M.A. in general psychology from NYU. She has employed behavioral, developmental and literacy-based approaches to help people of all ages who have more challenging forms of autism.

Kerry Magro: Thanks for talking with us today Amanda! Can you tell our audience a little bit about your background and how you got involved in studying autism?

Amanda Leeder: People with autism have always been compelling to me in a way that might be best described as an existential curiosity. For as long as I can remember, I have been trying to understand how the unique differences of this population define them, affect them and influence the people around them.

Several volunteer experiences in the field paved the way for a position as a literacy therapist for a young girl with autism. That was my first opportunity to establish an intimate connection with an individual who had significant social differences, and it was tremendously rewarding. Around this time, I launched the research program at the Rebecca School in New York City with the guidance of Dr. Lauren Tobing. I then researched the efficacy of DIR/Floortime therapy on a sample of students at the school. After completing my Masters degree, I worked as an ABA therapist for three years at the McCarton School.

I consider myself a seeker of innovative ways to foster engagement, learning, communication, happiness and independence in the schools and in the homes for people with ASD. That’s what led me to pursue a PhD in applied developmental psychology.

KM: When we first had a chance to talk, we really liked what you said about how each individual with autism is unique. Can you explain how you've seen that in your work today?

AL: The range of linguistic and cognitive abilities among people with ASD means that lessons and conversations must be curated to meet specific skill levels and interests. Gaps in our knowledge about ASD and the heterogeneity of this population render a one-size-fits-all approach unlikely. While individualized plans for education and support are implemented to account for these differences, they are insufficient in the face of such a complex problem.

The uniqueness of every learner with ASD and lack of research regarding available supports makes me reluctant to advocate with certainty for any single approach. I do, however, see a need for increased funding for program evaluations, more meticulous research methodology, and the replication of studies that claim to have significant findings for this population.

We must improve the identification and support of sub-types of individuals with social, communication and sensory differences. Increased autism awareness has been met with expanded considerations of types of people on the spectrum, such that the diagnostic label of ASD has lost its potency. Hopefully, as awareness and research for ASD expands, so will its diagnostic terminology.

KM: There are clearly many therapies for parents of children with autism to choose from today. What advice would you give to parents of children recently diagnosed with autism when it comes to deciding on these therapies?

AL: Parents should inquire about any recent internal or external evaluations affiliated with a particular school/organization, and ask for specifics regarding findings. Until research catches up with services being provided, it’s the Wild West out there, with many services rooted in biased, little or no research. As more support options become available, there will be a call for increased transparency of what works and does not work for people of all types, genders, and ages across the spectrum.

Parents should consult with professionals who are well versed in several different modes of therapy for autism, in order to allow for a better match between therapy and learner. I recommend visiting schools and talking with therapists working on the front lines, as they are the people making an impact on a daily basis.

Approaches for autism can be teased apart by considering each one’s educational ideology, goals for learners and training processes for the staff. Ultimately, it’s about what is best for your family and your child. The bottom line is - Get informed and trust your gut.

KM: Some of your current work is focused on siblings and autism. What intrigues you the most would you say about these sibling relationships?

AL: Yes, I am conducting a sibling study for my dissertation. The sibling relationship is unique in that it is a perfect crossover between a family and peer relationship. The literature on neurotypical sibling pairs underscores the natural ability of older siblings to facilitate cognitive and social development in younger siblings. They effectively motivate and teach concepts such as humor, theory of mind, creativity, advocacy, and interpersonal conflict/resolution.

If neurotypical siblings have this natural ability, it is unknown whether it is understood when their siblings have autism. My study explores neurotypical sibling’s unique abilities to take on the role of both mentor and friend to his or her autistic sibling. Through video observation, sibling play-interactions are analyzed based on a fine-grained coding scheme that measures whether, when and how siblings employ strategies to teach and socialize their autistic sibling. Each strategy’s effectiveness is measured based on the subsequent response of the sibling with ASD. Results from the study are expected to be published in late 2015. To participate in this study, email me at leeder.amanda@gmail.com.

KM: What's next for you? Any fun projects coming up?

AL: I am currently conducting a formative evaluation for a communication-based therapy for minimally verbal learners at the Atlas Foundation for Autism. Atlas is located in the Chelsea neighborhood of New York City, and they are growing quickly. This innovative communication therapy is called EVEnt (Emotional Vocal Exploration Therapy), and was developed by Atlas co-founders Alison Berkley and Amanda Friedman along with speech pathologist Nicole Kolenda. EVEnt is designed to teach conversational skills, self-advocacy and engagement.

The program is being evaluated from the ground up, in order to provide transparency at every step of its development. Individual differences are accounted for and measured by maintaining a basic structure for implementing the therapy while holding each learner to specific standards that will encourage and allow for a mastery of unique short and long-term goals. While the therapy seems promising, the findings from this longitudinal study will be the only way to validate the program effectively. Stay tuned for publication of these findings in early-mid 2015!

In terms of long-term career aspirations, I plan to continue to evaluate programs for people with ASD, and I encourage other research-savvy individuals with a passion for autism to join me in this necessary venture.

I’d like to end by sharing the following anecdote...

"Years ago, I had a mentor with whom I consulted about lofty and complex spiritual questions. One day I told him that I had finally arrived at an answer that satisfied much of my curiosity. He responded that ‘figuring out’ the answer to such a complex question is a sure sign I had made a wrong turn somewhere in my thinking. “Struggle”, he explained, “is at the heart of progress. Once you stop struggling, you stop learning.”  I’d like to think the same holds true for finding answers to something as enigmatic and complex as autism. I plan to devote my career to making progress in the field by asking and struggling with the right questions."