Some rooms ask you to begin with an explanation.
Before you can ask your question, you have to explain your child. What support looks like in your family. Why an apparently simple suggestion might be complicated. How much you love someone whose needs do not fit neatly into the systems around him.
At the Profound Autism Summit in Boston this April, I felt the relief of entering a room where so much of that was already understood.
I went with my mother: James’s grandmother, our beloved Mom-Mom. The April 16–17, 2026 gathering at the Hilton Boston Park Plaza brought together people working to improve life for autistic people with substantial, ongoing support needs. We arrived as a mother and a grandmother, with the person we both love at the center of our reasons for being there.
And for a little while, the world seemed arranged around helping us care for him.
A little Camelot
Camelot is the word I keep coming back to.
For those days, the annual summit offers a rare world where the questions that occupy so much of our lives belong on the main stage. Communication. Safety. Adulthood. The ordinary, enormous work of helping someone have a good day and imagining how to make a good life possible.
The difficulties do not disappear when we walk into a conference. But there is something restorative about finding a place where understanding them is a shared undertaking. Where people have gathered to think carefully, exchange what they know, and ask what could be better.
There is room to learn. There is also room to exhale.
Having my mother there made that feeling more personal. James is my son and her grandson. We love him from different places in the same family, and here we were, learning together. There is comfort in hearing something useful beside a person who already knows who you are thinking about.
It began with someone they loved
Behind the organizations that made this gathering possible are families who wanted more for someone they loved.
Liz Martineau founded Nashoba Learning Group in 2002, inspired by her son with profound autism. That beginning matters to me: a mother taking what she knew about her child’s needs and helping build something that could serve other families, too.
The Profound Autism Alliance, founded in 2023, grew from the Ursitti family’s experience. Cofounders Judith and Amy Ursitti brought a mother’s and a sister’s love for Jack to that work. Jack is himself named a cofounder and the organization’s Chief Inspiration Officer.
Nashoba Learning Group created the summit in collaboration with the Profound Autism Alliance. Their work gives that deeply personal love a wider reach: more people to learn from, more questions to ask, more families who might find help.
I felt that connection sitting beside my mother. We had come because we love James. So much of what surrounded us had begun with that same impulse: love for a child, a sibling, a person whose future matters.
A Norwegian connection, courtesy of a sweater
Then there was a small, lovely moment that had nothing to do with a presentation slide.
A fellow Norwegian found my mother and me because I was wearing one of my favorite sweaters—a Dale of Norway.
I love that a sweater could do that. In the middle of a gathering organized around one kind of shared experience, it opened the door to another. A familiar pattern, a little recognition, and suddenly a room full of people felt more connected.
That belongs in my memory of the summit, too. Alongside the important information were the human details: my mother beside me, the people we met, and the unexpected ways we found one another.
The wonderful questions
I loved the questions.
A thoughtful question can hold so much knowledge: what someone has already tried, what they have noticed, what still does not make sense, and what they hope might be possible for a person they love or support.
Listening to those wonderful questions was part of the education. They brought the conversation close to daily life, where an idea has to work for an actual person, in an actual family, on an ordinary afternoon.
The questions I carry into a gathering like this are very practical. How can we make it easier for James to tell us what he wants? How can we support his love of water while taking safety seriously? What helps him participate, make choices, and enjoy more of the world? How do we plan for adulthood while continuing to notice the life he is living now?
A room that welcomes detailed, complicated questions gives us somewhere to begin.
People, music, and the pleasure of being together
At least a few profoundly autistic people attended, too. Their presence mattered. I want gatherings about support to make room for the people receiving it—to be there, to take part, and to have their own experience of the day.
And the Flutie performers were absolute superstars. Their performance was amazing, one of the joyful memories I brought home. The Doug Flutie, Jr. Foundation for Autism helps make space for autistic artists and performers; at the summit, we got to enjoy the music and the people making it.
There was so much serious work to consider, and there was also room for pleasure. I loved that. A good life needs both the right support and things worth getting together for.
Ideas with a place in everyday life
The photographs I brought home remind me how much of the learning concerned the texture of an ordinary day.
One slide celebrated diversity in communication. Others explored picture communication, communication buttons, and AAC—augmentative and alternative communication. For me, the point is deeply personal: making more room for James to express himself, and helping the people around him become better listeners.
I want his preferences to shape his life. His yes matters. His no matters. The things that delight him matter. Support should give those things more room.
There were Swim Angelfish visual supports for swimming, too, and an Inclusive Fitness presentation connecting physical strength with everyday actions: standing up, navigating a curb, carrying something, reaching a shelf. I appreciated the attention to the small details that can make participation easier.
Another slide described a family AAC camp at Zeno Mountain Farm, with activities built around autistic participants’ interests. The list included dancing, movies, karaoke, sledding, and s’mores. Even in a photograph of a conference screen, there was the lovely outline of a life: people having things to look forward to, together.
The Lurie Center for Autism booth was especially informative. I appreciated having a place to stop, learn, and find out more. Useful information is easier to carry home when there is someone there to help you make sense of it. The center’s website also offers links to family education and resources for continuing that learning.
That is part of what I mean by a world designed to help us care. Care includes access to pleasure, friendship, movement, and belonging. It includes the opportunity to try something because it might be fun.
Governor Healey, and a future worth planning for
Governor Maura Healey’s speech about caregiving brought a tear—or more—to my eyes.
Hearing her speak, with my mother beside me, I felt how much it means for the work of caring to be recognized. So much of it happens quietly: the planning, the learning, the trying again, the love running through an ordinary day. It was moving to hear caregiving receive that kind of public attention.
For anyone who would like to hear her remarks, the Profound Autism Alliance’s Massachusetts page links to the governor’s summit speech.
Just weeks earlier, on March 23, she had signed Executive Order No. 656, establishing a framework for a statewide strategy to support adults with profound autism. The order calls for coordination across state systems and an advisory council to help shape that work. The state’s announcement explains the March 23 action.
For a family thinking about a child’s future, that attention matters. Our children grow up. Their lives continue to deserve planning, investment, understanding, and people prepared to support them well.
An executive order is a beginning. Its promise will matter most in the everyday lives of the people it is intended to serve. Still, it was meaningful to be there with my mother, at a gathering where that future was being taken seriously.
A date for our next little Camelot
The 2027 Profound Autism Summit is scheduled for April 15–16 at the Hilton Boston Park Plaza. I am glad there is another gathering to look toward.
For families considering it, the official summit page is the place to follow announcements and check current registration details. Ask the organizers about participation needs and any available financial assistance. Getting away to learn can take considerable arranging when you are a caregiver; that part of the planning matters, too.
In the meantime, the 2026 program and recording information and ProfoundVillage offer ways to keep learning between gatherings.
What I want to bring home
For me, naming substantial support needs belongs alongside respecting the full person: their communication, preferences, relationships, rights, and capacity to keep learning.
I want a future shaped with autistic people, including people who need extensive support to participate and be heard. I want caregivers to have help, and I want the people we care for to have as much say as possible in their own lives. Those hopes belong together.
That is what I want to carry out of our little Camelot.
The summit gives us a brief experience of a world where people have come prepared to help. Each year, it makes room for questions that can be difficult to find room for elsewhere. It allows families to imagine what more consistent understanding could feel like.
I went with Mom-Mom, wearing a sweater that helped a fellow Norwegian find us. I came away with ideas, wonderful questions, photographs, music in my memory, and a few tears I was glad to have shed. Above all, I remember being among people who understood why we were there.
And I keep thinking about how lovely it would be to make more of the world feel like that.
A place where our loved ones belong, and where helping them live well is something we do together.
