Three mothers share their journeys navigating Profound Autism in Part 2 of 2

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

Thank you for rejoining me for the second part of our discussion of profound autism (the first part of our interview can be found here). Our readers learned a bit about each of you and your families in the first part of this interview. Your articulate responses helped shine a light on profound autism, a large and important part of the autism community, often overlooked or overshadowed. Now that we laid out this foundation, let’s spend some more time on the topic of advocacy. How have advocacy efforts that challenge the notion of “fixing” influenced the kinds of studies/initiatives that do (or don’t) get funded for profound autism?

Charlie at age 12

Eileen: Again, it’s been pushed too far. While I understand the intent — to push back against harmful history and promote acceptance — it’s also had real consequences. Now, research that could actually improve the lives of people with profound autism, like medical studies, treatments for self-injury, or ways to support communication for nonspeaking individuals, is harder to fund because it’s seen as “curative” or politically incorrect. The message has swung too far, and in trying to protect one group, we’ve unintentionally made it harder to help another, the people who need the most support and can’t advocate for themselves.

Jack

Judith: A recent analysis of the US National Database of Autism Research found that only 11% of clinical research includes those with autism and intellectual disability. This essentially means that people with profound autism are not included, and I believe it is, in great part, a result of the broadening of the diagnostic parameters for autism. Voices of autistic people who do not have intellectual disability have influenced the government as well as the research community in some important ways over the past decade. But overall, they haven’t advocated for the ongoing inclusion of those with autism and intellectual disability. Profound Autism Alliance is working to change that. People with profound autism deserve to be seen, heard, and supported. This requires clinical research that is meaningful and inclusive of people with profound autism.

Lorri and Ryan

Lorri: I find those campaigns to be so insensitive to the needs of profoundly affected individuals, and I think they must be created by individuals who have not lived with someone with profound needs. Jonathan, a highly functioning individual with autism, would NEVER advocate against getting Ryan all the intervention we can find to help him be able to function in the world. Jonathan understands the cavernous difference between his autism and his brother’s autism.

I also do not understand why so many people object to parents getting a child help for a body part that is not functioning well. There is no widespread objection to parents getting braces for a child whose teeth are misaligned. The child might even object, might not want braces, and might complain about discomfort, but we typically defer to the parent with the understanding that an older/wiser parent is doing what is best for their child in the long term. Why can’t we offer the same deference to parents who choose ABA for their child?

The brain is a part of the body. If the brain is malfunctioning in a way that renders a child unable to say a sentence, then we should intervene to see if we can “fix” the brain such that the child can participate in conversation, if desired.

David: What you’ve all made clear is that campaigns against ‘fixing’ have sometimes gone too far, leaving profoundly autistic individuals out of the research and support they need. It’s a reminder that inclusion must mean the whole autism spectrum. Let’s now turn to how families and advocates can push for better priorities in policy and funding. When policies are made, do you think the priorities of families with less impaired children (e.g., employment programs, social inclusion) are balanced by the needs of profoundly autistic children (e.g., 24/7 care, co-morbid medical crises, life-threatening behavior)?

Eileen and Charlie

Eileen: No, I don’t think they’re balanced at all. From what I’ve seen, policies often focus on inclusion, employment, and independence, which are great goals, but they don’t reflect the reality of families like mine. My son Charlie will never live independently or hold a job; he needs 24/7 care and constant supervision to stay safe. When policy conversations center only on autonomy and self-advocacy, they leave out the people who can’t advocate for themselves, the ones who need medical support, long-term housing solutions, and trained caregivers. Families like ours are fighting for basic survival while current policy celebrates inclusion that doesn’t reach us.

David: How can policymakers better grasp the needs of children and adults with profound autism? What would you want policymakers to witness or understand firsthand?

Eileen: Honestly, I wish policymakers could spend a single day in our world — not in a meeting or a photo op, but in a home like mine. I’d want them to see what it’s like to keep a 12-year-old safe when he doesn’t understand danger, can’t communicate his needs, and needs help with every basic task. They’d see the exhaustion, the love, and the constant worry about what happens when we’re no longer here to care for him. Until they really witness first-hand that level of need, they’ll keep making policies that sound good on paper but don’t work for the people who need them most.

Jack At the Capitol

Judith: Recently, I took my son, Jack, who is 22 and has profound autism, to Washington, DC to meet with legislators. We managed four meetings on the Hill over two days, and ran into our Senator, Elizabeth Warren, in the hallway. Senator Warren promptly asked Jack if she could take a photo with him and we obliged. Jack’s in-person presence did more for our cause than any in-depth conversation or glossy handout ever could. His form of self-advocacy included few words, but experiencing his beauty and simultaneous challenges had a huge impact on every office we managed to visit. I hope to do more of this with him in the future if he is up for it.

David: Together, your reflections highlight that policymakers need more than briefings or statistics. They need to truly witness the lived realities of profound autism. Eileen, you underscored the daily intensity and constant vigilance families face. Judith, you showed how Jack’s presence on Capitol Hill made a deeper impact than any handout could. Both perspectives reinforce that authenticity may go a long way to transform policy from abstract ideas into meaningful action. What are some strategies you have found to be effective in ensuring that the needs of profoundly autistic individuals are represented in broader autism conversations?

Ryan at Unumb Place

Lorri: You can’t make someone understand profound autism by explaining it. You have to show it. The most effective strategy in my mind is in-person exposure. I seize every opportunity to have policymakers, academics, or really anyone visiting our family or our ABA center witness profound autism. No one fully grasps it until they have seen it first-hand.

Ryan at Unumb Place

Eileen: My social media channel: The Autism Cafe. The most effective strategy has been speaking up, even when it’s uncomfortable. I make a point to share what profound autism really looks like, the daily realities most people never see, and I don’t sugarcoat it. Using my platform to tell those stories has opened doors to harder but necessary conversations. I’ve learned that representation starts with visibility, and sometimes that means being the person willing to say the things others are afraid to…

Judith: I recently co-founded the Profound Autism Alliance, which focuses on improving the health and connection of people with profound autism through positive advocacy and inclusive research. Our focus is 10% venting, 90% doing. For example, rather than spending time debating online, we are on the ground in Washington, DC several times a month on what we call our Washington Wednesdays, meeting with members of Congress as well as with federal agencies that make decisions about research, supports, and services. The response to our presence and positive advocacy has been incredibly and surprisingly positive. We have successfully advocated for language that supports the inclusion of the profound autism population in research funded by the NIH through Autism CARES and in subsequent appropriations bills.

We have also participated in numerous research and provider conferences around the country and around the globe, helping bring profound autism back into the conversations. We even started our own conference with Nashoba Learning Group. In our second year, we were already up to 1,000 attendees from 33 states. It feels very much like a much-needed group hug for our profound autism community.

All of this has required a lot of sacrifice of resources and time but has proven to me that progress really is possible when you learn to stop throwing stones and start building with them.

David: Your approaches show that representation happens when families and advocates step forward to ensure that profound autism is seen and heard, to be better positioned to be included. What advice would you offer to policymakers, researchers, or the public to better balance respect for neurodiversity with the urgent need for support and intervention for those with profound autism?

Eileen: I think it starts with acknowledging that both things can be true: autism is a neurotype, and for many, it’s also a disability that can make daily life incredibly hard. Policymakers, researchers, and the public need to understand that respecting neurodiversity shouldn’t mean ignoring suffering or pretending everyone’s experience is the same. We can celebrate acceptance and inclusion while still investing in medical research, communication tools, and 24/7 care for those with profound autism. Real compassion means meeting people where they are, not where we wish they were. Nuance you know…

Judith: I believe that respect for neurodiversity includes addressing the urgent need for support and intervention for those with profound autism. I’m grateful that I have had the privilege to work with researchers, self-advocates, and other community members who also share that belief. It has resulted in meaningful progress for this population over the last three years.

Lorri: Come visit my house. Jonathan needs acceptance, love, and respect. Ryan needs support, intervention, and lifelong services. (He also needs love and respect, but his need for services is urgent and dire.) If you take the time to meet people at various places on the spectrum, it’s very easy to understand that their needs are not the same.

David: What you’ve all continued to share is that representation should be palpable. Whether it’s opening your homes, sharing unfiltered experiences and realities online, or getting a seat at the table (ideally two seats, right?), each effort ensures that profound autism is not only seen but actively included in the broader conversation. What are you most hopeful about currently?

Eileen: I’m hopeful because the media is finally starting to tell the truth about profound autism. For so long, journalists were scared to cover it, afraid of backlash or being accused of lacking “acceptance.” But lately, that’s shifting. The New York Times piece on “splitting the spectrum” was a turning point. Once we stop being afraid of the truth, we can start building real solutions for families like mine.

Judith and Jack

Judith: The world is beginning to understand that highlighting the needs of people with profound autism isn’t a source of shame or stigma, but of authentic love, respect, and momentum towards the right kinds of supports for them. We are changing the conversation, leaving behind competitive toxicity, and moving towards effective advocacy. And if you really want to feel inspired, spend some time talking with siblings of people with profound autism. They are a heterogeneous group, for sure. That said, many I know are headed into fields of medicine, research, and other service and support provision. It is beautiful to behold.

Lorri: I’m hopeful about the future of the ABA field. Access to care is so much greater now than when Ryan was diagnosed two decades ago. Access to diagnosis has improved. Through my perch at the Council of Autism Service Providers (CASP), I get to witness providers being ultra-collaborative with each other, working together for the good of the field and the children and adults who benefit from this work. I love watching the growth and maturity of the field. With growth comes the risk of bad actors, but I feel like we’re responding to those threats through the work of CASP and the nonprofit accreditation that is now available to help separate the wheat from the chaff. Accreditation of providers brings autism services into line with other healthcare fields, which, to me, feels right. The brain is an organ of the body just like the heart or the liver, and when an organ is not functioning properly, it’s appropriate for healthcare to play a role in addressing it.

David: One more question. Let’s get back to your sons. How is your family planning for the future?

Eileen: Planning for the future is one of the hardest parts. With Charlie, it’s not just about school transitions, it’s about what happens when I’m not here anymore. He’ll always need 24/7 care and thinking about that is both necessary and heartbreaking. I’m focused on finding long-term care options, building financial stability, and making sure Jude and Billie can have their own lives without feeling responsible for their brother’s safety. It’s a mix of love, fear, and constant preparation for a future I can’t fully control.

Jude on the courts

Judith: As Jack transitions into adult services, we plan to do all we can to ensure his continued medical, behavioral, and community supports. This means remaining in the Boston area, with the village of providers and community we have established for him. I am also doing all I can to enhance my longevity, so I can support him as a caregiver for as long as physically and mentally possible. This means regular exercise and a healthful diet.

I also think he deserves to experience living away from us, so when the time is right, we are planning to give him that opportunity. But there is a lot of advocacy and innovation required to create that. There are almost no options out there right now.

Lorri: We are older parents, so we started thinking long ago about our children’s futures, particularly Ryan’s. Who will care for him when we’re gone? Because of his level of impairment, we knew Ryan would always need assisted living. But we didn’t want Ryan’s care to automatically fall to his younger brothers, who deserve to live their own fulfilling lives wherever and however they choose.

Because we knew group housing was in Ryan’s future, we started visiting them more than a decade ago, when he was in his early teens. We knew we weren’t ready to move him at that time, but we wanted a feel for what was out there. We also knew that we did want to move him into group housing before we died. It seemed to us that the worst possible time for Ryan to move out of the family home that he has always known would be right after he lost the parents he had always known. We thought too much change at one time would be traumatic. So, we decided to plan toward moving him while we’re still able to help with the transition and to get him acclimated to his new environment. As mentioned in the first part of our interview, we created our own community, known as “Unumb Place,” which has six homes on a 10-acre campus. He moved in as the first resident in April 2025, and it has gone beautifully. He is very proud of “his apartment,” and he seems exceedingly happy every time we see him. Unumb Place is only 10-15 minutes from our house, so we can visit him often and have him come back home often. He loves pickleball, and there’s a court directly across the street, so we play with him now more than we did when he lived at home. We still pick him up for church every Sunday morning (if we’re in town) and spend the day together.

Ryan at work

Our other boys are both graduating in the spring – Jonathan from high school and Christopher from college. Jonathan wants to study nuclear physics with a goal of perfecting nuclear fusion energy. After grad school, Christopher will become a professional musician and perhaps teach saxophone at the collegiate level. Both will be fine. While Ryan’s autism has required us to think carefully and constantly about every aspect of his future, Jonathan’s autism will be his strength in the future. He calls it his “superpower.” They just couldn’t be more different, and that’s precisely why the voice of one cannot be the voice of the other.

David: Your voices are so inspiring. Thank you so much for taking the time to participate in this interview. I often say that science should be included in every conversation about autism treatment. In a related vein, your voices make clear that profound autism must be seen, heard, and included in every conversation about research, services, and policy. Thank you for sharing your experiences and for paving the way toward greater understanding. Let’s come back to this conversation in a few years to take stock of where we are and where we can go to better meet the needs of the neediest within the autism community.

Reference for this interview:

Celiberti, D. (2026). Three mothers share their journeys navigating profound autism; Part 2 of a two-part interview with Lorri Unumb, Judith Ursitti, and Eileen Lamb. Science in Autism Treatment, 23(2).

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Three Mothers Share Their Journeys Navigating Profound Autism: Part 2 of a Two-Part Interview with Lorri Unumb, Judith Ursitti, and Eileen Lamb