More than 525 people from 34 states and two countries, each of whom are somehow connected to a person with profound autism, united together at a first-of-its-kind summit in Brighton. And Profound Autism Summit attendees left the event with more than pamphlets and words of wisdom: the caregivers felt an emerging sense of belonging. Some, for the very first time.
“Identity is so important for so many people in our community,” Judith Ursitti, president of Profound Autism Alliance, told MassLive, sitting near some of the many informational booths inside the Boston Marriott Burlington’s halls at the summit on April 5.
Other conference chairs for the summit were Liz Martineau, founder and CEO of Nashoba Learning Group, and the group’s director of training and business development, Katherine Johnson.
“With this part of the population — which the [Centers for Disease Control] says is one in four people with autism have profound autism — they have been feeling on the margin. We need to be able to have conversations and address the things that we’re going through,” she said.
At its base definition, profound autism means a person requires life-long care, Ursitti said. There are levels of presentations and severities within that specified diagnosis, which can include intellectual disabilities, violent outbursts, or communication problems.
Over a dozen sessions were held at the summit with nine speakers and 11 panelists, with topics appealing to both family and medical caregivers. These included subjects such as “elopement,” or when a person leaves supervision without permission, options for alternative communication devices, and information about interpreting and behavior response.
During one of the afternoon sessions, a member of the audience stood up to ask a question and doing so, announced herself as a sibling of a person with profound autism. Though not the base of her question, nor the session’s topic at hand, it sparked at least four others in the room to stand up and identify themselves with the sister. Countless more buzzed in excited conversation about their experiences as a sibling.
Ursitti recalled a conversation she had at the summit with a 63-year-old mom from Texas, who said she’s the caregiver of her 25-year-old son with profound autism.
“She felt compelled to come, because she knew she could get information that was relevant what she’s going through and what her son’s going through,” Ursitti said. “If we can do that, that’s the biggest success: connecting with caregivers, empowering them and sending them home to know they’re not alone.”
Ursitti is a certified accountant, by trade. But when her son was diagnosed with autism at the age of two, she said it “pulled her into advocacy.” She worked for the research and advocacy group Autism Speaks for 13 years to pass autism insurance legislation in all 50 states. And once she got across the country, Ursitti knew she wanted to focus on those with severe diagnoses.
Now, the Profound Autism Alliance provides support for researchers looking into profound autism and helps connect families to those looking to work with those researchers, along with other resources for them.It’s also working on an effort its dubbed The Dignity Project, which tells the stories of people with profound autism and helps to show “the darkness and the light,” Ursitti said. Additionally, the group has its Sibling Action Network, a resource just for siblings. And it’s currently funding a project studying how to develop the best treatment for those with intense behaviors.
“The entire autism community can support each other. Sometimes we’re going to support each other in broad ways. Sometimes we’re going to get little slices, and focus on specific things for that part of the spectrum. And I think that’s okay. I think that’s what needs to happen,” said Ursitti.
With her eyes on next year’s summit, Ursitti said she feels the gathering successfully brought together people who did not know each other, but had the same common goal: to learn alongside and connect with those who truly understand their loved ones’ lives.
