Been there, succeeded at that: An interview with Eli Allen sharing his early experiences with ABA

Interview conducted by:
Charlie Hui (Extern) and David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment

Eli at age 4 in the late 1990s.

For many individuals with autism, the help and support they receive as a child vastly shapes their future. For 30-year-old teacher’s aide Eli Allen, he was fortunate to have a family who were staunch advocates and helped him access quality early, intensive Applied Behavior Analysis (ABA) therapy following his diagnosis. Raised in Oyster Bay Cove, New York, he currently resides in Florida.

Eli’s journey is a testament to the profound impact that early intervention and persistence can have on the lives of individuals with autism. His experiences highlight the importance of advocacy, family involvement, and evidence-based practices in fostering communication, agency, and independence. We are deeply grateful to share Eli’s journey along with his unique insights and perspectives. His story not only inspires hope but also underscores the critical need for continued support and resources for individuals with autism and their families not just upon diagnosis but throughout their lives.

Charlie and David: We have been looking forward to this opportunity to interview you. Let’s start from the very beginning. What was your parents’ experience like in their journey to obtain the services that you received?

Eli: Prior to the Early Intensive Behavior Intervention (EIBI) home program, at the age of 3, multiple clinicians throughout Nassau County had diagnosed me with infantile autism and verbal apraxia. My family often mentioned that I had no spoken language (except for uttering sounds in the back of my throat), did not interact with other children, and would often stare at the ceiling for hours without responding to my name being called. Memories of my early childhood are mostly incomplete to me; nevertheless, I can remark on the feelings of frustration I had as I was unable to express myself.

My mother did an extensive amount of research, and she stumbled upon ASAT founder and parent advocate Catherine Maurice’s prior memoir Let me hear your voice: A family’s triumph over autism (1993). Shortly after, my parents learned that ABA was an evidence-based intervention for autism which had the most science behind it, yet it was difficult for them to find many schools or any clinics offering such services in those days. The local special education preschool that I went to did not even provide those services back then (they do now). Following this, my mom submitted admission forms to the only school in the county offering ABA therapy, just to be told there was a six-year waiting list.

The school informed my mother that the only person they knew seeking to provide intensive ABA therapy in a home setting was Dr. Bobby Newman, but my parents were warned that he was in very high demand throughout New York State, and he might not have any availability in his schedule. My mother asked my late grandparents to attend a lecture he was conducting in Manhattan. After the lecture, my grandmother told Bobby that my mother would be calling him and insisted he’d at least return her phone call.

Charlie and David: ….and did he return your mother’s call?

Eli: Yes, he did! My parents and grandmother described in great length how Bobby supervised a staff of therapists who instructed me 40 hours per week, or 8 hours a day, from Monday through Friday. They sat across from me, one-to-one at a table. Bobby and his wife, Dana, evaluated me on the first day and laid out an intervention that targeted crucial developmental building blocks toward receptive language. Therapists would reinforce eye contact by calling my name while holding a chocolate chip cookie, moving it from my eyes to their own. They also taught me to clap my hands, wave bye-bye, stand up, turn around, drink from a cup, imitate single toy play actions, point to something I wore, match shapes, and so on. Essentially, I learned how to learn.

Once I could follow directions without the manual prompts, the goal shifted toward teaching me speech. To say “cuh” for cookie, Bobby had me blow or feel the pressure of the breath. And, of course, there were plenty of efforts to ensure that my skills taught via Discrete Trial Instruction carried over throughout the day. The home program back in 1998 lasted for 6 months, and my parents were the first in Nassau County to win a lawsuit against the school district to receive funding for the therapy.

Charlie and David: Your grandmother sounded like she was a feisty woman and a caring advocate. Do you have any memories of your home program?

Eli: While I do not remember much of the therapy, I do recall watching the videotapes of myself in the playroom of my family’s basement, where the EIBI after-school home program took place. My lead therapist, Bobby, was making me laugh and giving me piggyback rides. He also trained my assistant teacher and babysitter Joelle how to work with me.

Charlie and David: Eli, we also wanted to follow up regarding your parents’ legal actions. You talked about how your parents won a lawsuit against the school district to receive funding for therapy, can you elaborate more on that process and what impact the funding had for you?

Eli: Yes, of course! My parents hired a special education attorney, and even though coverage for the EIBI home program through the Individuals with Disabilities Education Act (IDEA) was limited to 25 hours per week on the federal level, they had to pay out of pocket for the additional 15 hours, bringing it to a total of 40 hours.

On weekday mornings, I was also enrolled in a local special education approved private school, which meant my parents only needed to sign a contract with our local school district, and the tuition was already pre-approved for funding by the New York State Department of Education.

Charlie and David: Clearly your early ABA intervention was deeply beneficial. What has been your overall impression looking back now as an adult?

Eli: Reflecting back on my journey, I feel fortunate that my family had the resources to access the ABA therapy I needed to get me where I am today. Otherwise, my life would have turned out very differently. I also find it to be quite a shame whenever I hear that nonspeaking children with autism are denied services, including ABA and/or speech therapy, through their health insurance plans because these children will not realize their potential as they did not get the services they required when they were younger.

As a result of my ABA home program, I became highly verbal, and I was talking to and playing with a girl in my class (I was 4 ½ years old at the time). The school psychologist – who was among the three specialists to diagnose me – wrote in his report that he no longer thought I met the diagnostic criteria for being on the autism spectrum. However, since there is no cure on the physiological level, I still have traits of it. This led to the principal and chief neurologist at Long Island Jewish (LIJ) North Shore University Hospital in Manhasset – the first clinician I received the diagnosis from – scheduling a meeting with my mother because my success became noteworthy to them. After the ABA program ended, I underwent home-based speech therapy with Lenore, a speech pathologist from this preschool until I turned 7 years old.

Charlie and David: Please tell us a bit about primary and secondary school. What was that like for you and how did providers support your success?

Eli: From third to twelfth grade, I attended The Summit School in Queens, New York, a prestigious state-funding approved private school for bright students with mild learning disabilities, where I was given a significant amount of support for my attention challenges and anxiety.

A notable example in which my severe attention challenges were addressed here involved having a 1:1 aide from fourth to ninth grade. Among other interventions, the speech pathologists assisted me in comprehending the stories I read by having me write down the who, what, where, and why of each page. I am also grateful for the lovely teachers who proctored me for the final exams before I graduated from their high school with a New York State Regents Diploma in 2012.

Charlie and David: Can you give us your thoughts and perhaps a memorable moment as a teenager?

Eli: Growing up at Summit, I established friendships with my fellow students. Moreover, I always had restricted interests on specific hobbies, such as favorite pop music groups, television shows, and even navigation! During the 10 years I attended this school, the bus company referred to me as “the direction boy” since they found me very resourceful in helping the bus drivers’ find their way during the hour-long rides to and from school. Their written directions tended to also have many typos (i.e., inaccurate street names), so I once retyped and printed out the correct route for them on Microsoft Word, which my bus driver brought back to her supervisors at the bus company.

Charlie and David: Can you tell us a bit about your educational experiences after graduating high school and a bit about your life now?

Eli: In 2017, I earned my bachelor’s degree in psychology from Mitchell College in New London, Connecticut. During my college graduation, our former house nanny, Lorraine (“Patsy”), flew in from Barbados, and she was screaming with enthusiasm in the audience as I walked down the aisle. After the ceremony, Patsy exclaimed, “I still remember when Eli was 4 years old and we were so worried he’d never talk. He just graduated college with high honors. He came such a long way!”

That following fall, I took some graduate-level course work in Behavior Analysis at Long Island University (LIU) Post in Brookville, New York before moving to Florida a year later. Now, the friends I formed at Mitchell, along with my current roommate and cousins, are the people I happily visit on a regular basis.

Charlie and David: As you shared, your parents and grandmother have been incredible supporters. Can you share a little about your siblings?

Eli with his late sister, Sami.

Eli: I have an older brother and a sister. Tragically, in March 2018, my 29-year-old older sister Samantha (“Sami”) passed away from Osteosarcoma, a rare form of bone cancer in her neck. I’m grateful, however, that she lived long enough to attend my college graduation and that I still have my 38-year-old brother, Ari, who lives with his wonderful boyfriend, Sam, in Southern California.

Regarding my beloved late sister, her “Magic & Miracles for Samantha” page garnered over 1,000 Facebook followers, many of whom shared how much of a difference she made in their lives. At this time, my brother disclosed to me the reason she was able to make such a profound impact on others is because of how patient and engaging she was with me when I was young and couldn’t speak. During her hospice stay in Florida, Sami mentioned that I hadn’t built rapport with her until I became verbal through the early ABA program.

Charlie and David: We are very sorry for your loss and the grief that you and your family have had to shoulder. We are sure she was indeed very proud of you for graduating college and for being such an amazing role model for others. What led you to go into special education? How has your experience with autism influenced your teaching approach?

Eli: I decided to go into the field of special education and autism to give back. Plus, I enjoy working with children and adolescents, so I feel good knowing I can teach them new skills. I have extensive background knowledge in ABA and utilize strategies derived from this science in my classroom, including Positive Behavior Support, differential reinforcement contingencies, Functional Communication Training, Pivotal Response Treatment, and Direct Instruction.

Charlie and David: What advice would you give to other teachers working with students on the autism spectrum?

Eli: To all the outstanding teachers out there: be patient and take pride in working with students on the autism spectrum. I know from firsthand experience that it often takes me longer to understand or process something new, whether academically or even in a task at work.

The autism charter school I’ve been employed at for over a year has an excellent Schoolwide Positive Behavior Support and Contingency Management program based on ABA, with many superb behavior analysts, speech pathologists, occupational therapists, job coaches, and teachers who work there. I have learned so much in this role as well, particularly how potent praise and choice can be in promoting progress.

Some advice I have for teachers is during classroom instruction, if students blurt out the answer or call out, I’d suggest utilizing differential reinforcement contingencies to replace this disruptive behavior, such as announcing, “I’m only calling on students who raise their hands.” When a student raises their hand, the teacher should then give praise by saying, “I like how nicely [he or she] is raising their hand,” prior to allowing them to ask or answer the question. In addition, for students displaying verbal or physical aggression, encourage them to use their words instead; this procedure is known as Functional Communication Training.

We initially had certain students who would curse and hit to escape doing their academics before we implemented a token board, curriculum modifications, and other positive reinforcement procedures in the classroom. These included allowing such students to choose the subject they wanted to do first, setting a timer for completing only half of their assignments, and finally, letting them select the reinforcer (i.e., sitting on a bean bag, watching YouTube videos or playing games on the Chromebook laptops, Nintendo, etc.) for when they finished their work and behaved properly.

Charlie and David: Have you encountered any misconceptions or misinformation about ABA in recent years? Do you respond to these? What does that look like?

Eli: That’s a great question you asked, as I’ve encountered others having misinformation about ABA therapy my whole life! For instance, a middle school friend of mine initially told me her younger cousin is autistic and received ABA, but he didn’t like or do well with it. Years later, in high school, her cousin obtained ABA from another therapist and “he did very well and learned a lot.” The behavior analyst told the family, “Every profession has excellent, as well as not so great providers, which has to do more with the person implementing it than the approach itself.” It reminded me how fortunate I was to have an excellent team of therapists who worked with me in a high quality early ABA program at a time in my development that was so vital.

In fact, when I visited an ABA clinic in Coral Springs, Florida roughly 5 years ago, one set of parents told me they tried other commonly used therapies with their young son who is autistic for six years and saw no progress. They then said in just a year of ABA therapy at the clinic, his vocabulary exploded, and he started speaking.

There are many people on the autism spectrum whom I have chatted with on my Wikipedia account who are anti-ABA, often misperceiving it as contrary to the neurodiversity movement—partly due to the electric shocks and scolding methods that were administered 60 years ago. They tend to even compare it to the gay conversion therapy experiment study in the 1970s, a practice which has been long discouraged and does not currently reflect the rather broad field of ABA. When I gently clarify these misconceptions, my attempts typically fail to shift their opposing viewpoints on it.

Last fall, I was dismayed when I came across a speech pathologist at my workplace who was against ABA. I remember telling her how “great it would be if they had more dual degrees in ABA and speech therapy because of all the overlap between the fields.” Nonetheless, she responded by saying, she “personally thinks ABA has no science behind it and it’s abusive because it’s adult directed.” I explained to her that I have seen children on the autism spectrum make significant strides in their development with this therapy, especially when solely using traditional speech therapy isn’t sufficient, and over 50 years of robust research indicates how well it works for them.

Charlie and David: Your experiences with misinformation are sadly commonplace. This is part of the reason we were so motivated to interview you. Finally, what is your advice to those who do have autism?

Eli: My advice to those on the autism spectrum is to strive to do your best and follow your passions and talents that could lead you to be successful in your careers later in life. Don’t let a ‘label’ define you. It is important to note that there are many world-renowned individuals on the autism spectrum, including Dr. Temple Grandin and academic child prodigy Jake Barnett, who became quite accomplished as adults.

Charlie and David: Once again, thank you Eli for sharing your uplifting story as a recipient of ABA. You very generously discussed your experiences with us, and we are certain that our readers will benefit from what has been shared. We wish you the best in your journey forward and hope you stay in touch!

Reference for this article:

Hui, C., & Celiberti, D. (2024). Been there, succeeded at that: An interview with Eli Allen sharing his early experiences with ABA. Science in Autism Treatment, 21(11).

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Been There, Succeeded at That: An Interview with Eli Allen Sharing His Experiences with ABA as a Child