Interview conducted by David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment

Interviewees:

    • Lorri Unumb, JD, CEO of The Council of Autism Service Providers
    • Judith Ursitti, CPA, President of Profound Autism Alliance
    • Eileen Lamb, Published author and founder of The Autism Cafe

David: Thank you for joining me for this important conversation. I am excited that our readers will be hearing directly from you about the realities of profound autism and the challenges, the progress, and the advocacy that define the realities families navigate each day. I have several questions to pose, but before we dive in, can you share with our readers a little bit about your family? What does a typical day look like in your home?

Lori and Family

Lorri: There is no typical day for our family. Every day is an adventure. Of the five Unumbs in our household, Ryan has the most stability and structure in his day. He attends the Unumb Center for Neurodevelopment every weekday from 8:30 am to 3:30 pm, a schedule that has extended into adulthood for him. This year, we have been especially grateful for that stability in his schedule because it kept life somewhat familiar for him as he made the transition from living full-time in our home to living in a residential community that we built with his needs in mind (“Unumb Place”). The bed that he sleeps in and the person who makes him breakfast is different now, but his daily routine and the people who interact with him during the day have remained the same. For that, we are grateful.

Ryan is 24. Dan and I have two younger sons – Christopher, age 21, and Jonathan, age 18. It’s crazy to think that all three sons are now “adults.” I’m not sure exactly why I put that in quotation marks; it just seems appropriate. Both Christopher and Jonathan have grown up knowing autism their entire lives, as Ryan was in daily applied behavior analysis (ABA) therapy in our home when each brother was brought home from the hospital. They know autism extremely well, and I almost think they could pass the Board Certified Behavior Analyst® (BCBA) exam just from the amount of incidental learning that has happened over the years. Eventually (just after 2nd grade), Jonathan got his own autism diagnosis, but he is on the polar opposite end of the spectrum from Ryan. Ryan is essentially non-verbal, aggressive at times, and occasionally has seizures. Jonathan is so verbal that I must keep a dictionary handy to have a conversation with him. And he’s all about peace and love. He was also recently crowned homecoming king at his high school.

Christopher manages life well as the prototypical middle child. He will graduate in spring 2026 from Northwestern University with a degree in Saxophone Performance and Music Education. He did well throughout college, except he nearly failed one class: “Teaching Music to Special Needs Students.”

Eileen and family

Eileen: I’m a mom of three: Charlie, Jude, and Billie. Charlie is profoundly autistic and intellectually disabled, so our days revolve a lot around his routines and safety. Jude is almost 10, diagnosed with Level 1 autism and obsessed with soccer, and Billie is our sweet, spirited preschooler who’s still adjusting to daycare. I was diagnosed with Level 1 autism a decade ago. I’m a published author and content creator.

Judith: We refer to our family as The Four Corners. Andy, Jack, and I live outside of Boston with our two dogs. Our home life revolves around work (Andy heads accounting at an energy company and I run a nonprofit) and Jack’s programming at Nashoba Learning Group, and in the community. Our adult daughter, Amy, lives in New York City, and we try to see her as much as we can. We are extremely schedule oriented. Jack wants to know every day what to expect, so we use an app on his iPad to map things out for him every morning. We usually revisit the schedule again, as Jack likes to confirm that it is still the plan.

Judith and family taking in a Broadway Play

Jack recently graduated from the educational program at Nashoba Learning Group and will soon start at their adult day program. The program is based on the principles of applied behavior analysis (ABA), and in our experience, has provided truly individualized, evidence-based solutions. After spending weekdays at Nashoba, one of Jack’s community team members, all ABA therapists, participate in community activities with him, including things like swimming, running, people watching at the mall, or grocery shopping. Jack is home in time for dinner, and then we hang out. He likes to listen to music (shoutout to Cardi B and Britney Spears), and I usually try to do some sort of strength training and then watch some true crime with Andy.

Jack also has weekly medical appointments at Mass General due to some challenging co-occurring conditions, so those days can look a little different. On the weekends, we go to local restaurants and grocery stores. Our community knows Jack and generally gives him the royal treatment. It really feels good after a long, challenging week to feel true acceptance in the community.

David: Each of you has highlighted how autism shapes not just one child’s experience, but the rhythm of the entire household. It’s powerful to see how siblings, parents, and communities all fit into that journey. Eileen and Lorri, as you are both raising more than one child with autism, how have your experiences accessing services varied between them?

Eileen: Both of my sons are autistic, but the support they need is very different. Jude did well in “inclusive” swim lessons and is thriving in a regular school with very minimal accommodations.

For Charlie, the same swim program told me he would need two aides plus the instructor because his needs were so high, but they only ever provided one person. They wouldn’t allow him to attend unless we found an extra aide for him. School was similar: it took a long time and a lot of advocacy to move him to a school for children with severe disabilities, where he finally has the support he needs. The contrast really shows how what works for one autistic child may not come close to meeting another child’s needs.

Lorri and Ryan

Lorri: The experiences of raising Ryan and raising Jonathan have been dramatically different. With Ryan, we felt constantly stressed out about whether we were doing everything we could do for him. We suffered enormous financial stress as he began ABA in the days before health insurance covered it. We were physically exhausted every day from caring for him and mentally exhausted from dealing/battling with the schools, insurance, bills, appointments, meetings, paperwork, etc.

With Jonathan, we struggled to find the right educational placement for him, but we didn’t stress about the same range of things as with Ryan. The day Jonathan was diagnosed, I told him about the evaluation results and explained the spectrum nature of autism. I used the term “Asperger’s” to explain his autism, although the term was already out of the Diagnostic and Statistical Manual of Mental Illnesses (DSM-5). He responded calmly to the news of his diagnosis and simply asked, “Is that why I’m so much smarter than everyone else in my grade?” I said, “Yes. And that’s also why you think it’s OK to make that statement.”

We never pursued ABA for Jonathan. I’m not sure if that was a well-thought-out decision or just a function of life being too busy with Ryan’s intense needs. At any rate, he never had any formal ABA other than a few attempts at ABA-infused social skills training and summer camps, all of which he thought were overly simplistic and not useful.

Regarding school, he attended a fancy private school for pre-K through second grade, at which point the teacher informed us that said fancy private school was not a good long-term placement for Jonathan. He was having quirky behaviors as he was realizing that he was different from the other kids; he also, according to the teacher, was so advanced that the school was not going to be able to appropriately challenge him academically. She recommended a public school.

We began public school in the 3rd grade. We decided not to go to our home elementary school and instead to transport him a few extra miles each day to a public elementary school that had a pull-out placement that was specifically designed to address social skills deficits in students with high-functioning autism. About six weeks into his mainstream 3rd-grade education, Jonathan called an IEP meeting to inform the school that their special educational pull-out placement was stigmatizing and a waste of his time because it was not individually tailored to meet his needs. That was his last day accessing special educational services.

Since that time, he has excelled at school with just a 504 plan, which he uses primarily to secure priority seat placement in the classroom, i.e., a seat in the back row so that he can play video games during class without distracting classmates.

Eileen and Charlie at age 7

David: What both of you have highlighted is the tremendous variability of autism — not just across families, but even within a single household. The supports and interventions that empower one child may be ineffective or even stigmatizing for another. Such an important reminder that autism services can’t be one-size-fits-all, which is a timely segue to our next topic. It is worth noting that some advocacy voices speak with a broad brush, framing autism through a lens of acceptance that can feel disconnected from the lived experience of families facing profound challenges. In doing so, “love” and “acceptance” often appear to not only overshadow but also eclipse intervention. Have you encountered these perspectives, and how do they resonate with your experience supporting your sons with more intensive daily needs?

Eileen: I’ve heard those takes, the “just love and accept them” message. And of course, I love Charlie but love alone doesn’t keep him safe when he’s running toward traffic or swallowing screws. Acceptance doesn’t help him learn to communicate or eat a meal without smearing food everywhere. For kids like Charlie, intervention isn’t about changing who they are; it’s about giving them a chance at a safer, happier life.

Judith: Every person with autism is different. Extremes and absolutes aren’t helpful. I have encountered some self-advocates who are anti-intervention. They aren’t representing evidence-based practice or the perspective of all self-advocates or the broader autism community. In contrast, I have literally

Judith and Jack (age 11)

walked the halls of more than one state capitol with autistic self-advocates, who desire intervention for themselves and others when it is needed. It’s unfortunate that a small group of loud voices has misrepresented what is really happening in our community. 

Lorri: In the case of Ryan, “love and acceptance” means intervention. The two cannot be separated. Love requires giving Ryan the most tools possible to express himself, pursue his wants, and meet his needs. Acceptance comes with his being able to interact with others as someone with autism.

David: Eileen, I am sure our readers will appreciate how you reframed intervention not as changing Charlie, but as giving him the chance for a safer, happier life. Judith, your experience working alongside self-advocates who actually want intervention is a powerful, yet often unnoticed, counterpoint to some of the louder anti-intervention voices. It is also an important reminder that if we know one autistic self-advocate, we know one autistic self-advocate. There is no room for a broad brush across the board! Lorri, I love how you put it — that for Ryan, love and acceptance are intervention. That framing really captures the idea that supporting him with effective tools is the deepest form of care.

What you’ve all emphasized is that intervention and acceptance aren’t opposites — they’re inextricably linked. For children and adults with intensive needs, providing tools and supports is itself an act of love, and it’s clear that nuance matters far more than absolutes. That perspective sets the stage perfectly for us to discuss how families navigate the practical realities of care and advocacy, which ideally should be guided by research, right? When reflecting on research that you have encountered, do you see autism research focusing more on those with fewer impairments, and what is lost when profoundly autistic individuals are excluded? What kinds of research do you wish were more common or better funded?

Eileen: Yes. So much of autism research focuses on people with few or no intellectual disabilities and those who can speak for themselves. It leaves out the very population that needs the most help. Excluding profoundly autistic individuals limits our understanding of the daily challenges faced by families, including aggression, self-injury, elopement, and the critical need for improved treatments and support systems.

Judith: When my daughter, Amy, was studying neuroscience at Emory, she conducted research on how autistic people experience pain. She was inspired to do this because of the self-injurious behavior she had witnessed her own brother display. She quickly learned that the Institutional Review Board (IRB) process made it almost impossible to include people with profound autism in research. She continued with her study and greatly valued the participation of autistic self-advocates. Ultimately, the experience motivated her to attend the International Society of Autism Research annual meeting to start advocating for real inclusion of those with profound autism in clinical research.

Since then, the Profound Autism Alliance has helped create a research definition for profound autism using the Delphi consensus process, to help researchers understand what this population looks like and how to include them.

David: Your responses underscore how profoundly autistic individuals are often invisible in data, which means their needs risk being invisible in policy and practice as well. We will come back to this after we go a bit more in-depth into the influence of autistic self-advocates. Self-advocates have helped redefine autism in powerful ways, often focusing upon acceptance and strengths. Eileen, what do you feel has been gained from their work, and where do you see the conversation leaving out families like yours, who support children with profound needs?

Charlie in his bedroom

Eileen: I mean…autistic self-advocates have done a lot of good, like pushing for inclusion, understanding, and an end to the harmful stereotypes that used to define autism. But I also think it’s been pushed too far in one direction. The conversation has become so focused on the experiences of people with mild support needs that it’s making it harder and harder for families like mine to get services for those who are profoundly autistic. When we start saying autism isn’t a disability, we erase the people for whom it very much is, the ones who need lifelong care, who can’t speak for themselves, and whose challenges don’t fit into the “neurodiversity” narrative that dominates the discussion. We’re erasing my son.

David: We’ve talked about the challenges and the needs of individuals with profound autism, but it’s equally important to recognize the progress and meaningful outcomes that come from hard work, collaboration, and evidence-based intervention. Sometimes “milestones” look different than what most families expect, yet those achievements, whether tied to communication, independence, or simply joy in daily activities, are deeply significant. With that in mind, can you share some skill development, progress, or achievements that have been especially meaningful for your family?

Eileen: For us, progress looks different than it does for most families. One of Charlie’s biggest achievements has been learning to use his Augmentative and Alternative Communication (AAC) device to communicate basic needs, things like “water” or “break.” It might seem small, but for him, it’s life changing. Every new word, every moment of connection, feels like a victory because it means he’s a little more understood and a little more in control of his world.

Judith and Jack

Judith: Developing leisure skills has been a game-changer for Jack. He picks out his own music to enjoy listening to daily. His musical taste is eclectic, modern, and I think it helps me stay current! He also learned how to run and swim for exercise with his ABA team, which has honestly helped him maintain good physical health and the peace of mind that regular exercise helps create. There is nothing better than enjoying downtime with Jack as he listens to music, or going out for a run with him, although my pace is frequently too slow.

Lorri: In my frequent speaking engagements in the autism/ABA community, I give a whole presentation on meaningful outcomes for our family. The pictures I show include:

  • Ryan getting a haircut and shave at a local barber shop
  • Ryan grocery shopping
  • Ryan riding a bike on a family outing
  • Ryan taking an Uber independently to and from The Unumb Center for Neurodevelopment
  • Ryan holding a baby and smiling
  • Ryan participating in a mud run with his therapy team
  • Ryan throwing out the first pitch at a local baseball game
  • Ryan accessing the correct public bathroom at various gas stations and restaurants
  • Ryan catching in his mouth the broccoli thrown by the hibachi chef at a Japanese restaurant

The most meaningful outcomes are these practical things that allow him to participate in everyday activities with our family. And to enjoy doing so.

Some of the Unumbs at play

David: What’s so powerful across your stories is how progress takes many forms — from Charlie’s life‑changing requests on his AAC device, to Jack’s joy in music and exercise, to Ryan’s independence in everyday community activities. These achievements may look different than what may be highlighted by families not impacted by autism, but they each represent deeper connection, greater autonomy, and fuller participation in family and community life. Together, they remind us that meaningful outcomes aren’t measured by comparison to others, but by the ways they expand dignity, joy, and belonging for everyone with autism. As an aside, this underscores the unique insights single-case research design offers, beyond what large group studies alone can capture and will be part of what we address in the second part of this interview. Readers, stay tuned!

 

Reference for this interview:

Celiberti, D. (2026). Three mothers share their journeys navigating profound autism; Part 1 of a two-part interview with Lorri Unumb, Judith Ursitti, and Eileen Lamb. Science in Autism Treatment, 23(1).

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