Inclusive research and collaborative, targeted advocacy for those with profound autism.
Joined August 2022
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- Followers 470
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551 Photos and videos
Fortner had severe autism and was non-verbal, making her completely dependent on her caregivers. Investigators say the abuse she endured was extensive and repeated.
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Why should research be a focus when supports and services are in such short supply? At Profound Alliance, we believe supports and services are crucial, and that health and connection matter too.
Learn about how research plays a key role:
profoundautism.org/advancing…
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Happy Washington Wednesday! The House Appropriations Committee passed a bill requiring prevalence tracking of profound autism. This happened because of your advocacy. Help keep it moving in Congress: ow.ly/m5Ra50Z9PFT
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From the Washington Post:
"My sister is autistic and nonverbal. Here are 3 ways I connect with her. Not everyone communicates through language. Finding alternative ways to bond is simpler than you may think."
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People with profound autism need round-the-clock support throughout their lives. That doesn’t make them less. They deserve to be healthy, safe, and connected just like everyone else. Understanding their needs is the first step to meeting them. Learn more: ow.ly/8O9N50Z8VHu
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Our Profound Autism Advocacy Network focuses on the part of the autism spectrum that requires lifelong, 24/7 care. Participate a little or a lot. It all matters.
Sign up below. 👇
profoundautism.org/advocacy/…
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Too often, families facing severe self-injury or aggression in profound autism struggle to find help. ECHO Autism: Intense Behaviors trains physicians through case-based learning to provide better, more compassionate care. ow.ly/8kqs50Z6t3n
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From #INSAR2026 Scientific Chair Christine Nordahl:
"Talking to autistic people and their families has really changed how I view autism research. Not just people who can advocate for themselves, but also families of children with profound autism."
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People with profound autism have been increasingly excluded from clinical research. We’re committed to changing that.
Interested in participating or connecting with the profound autism community? Visit:
ow.ly/avoi50Z5nLl
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"It's incredibly important that we focus on profound autism to support individuals who need around-the-clock support due to this condition. As many as a third of people with autism actually have profound autism, so it's not a small group.”
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"The challenge is to retain the gains of broader recognition while ensuring those with the most complex needs remain clearly in view. A spectrum can accommodate diversity. But it must have enough precision to guide action for those who need it the most."
theconversation.com/as-the-d…
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Take action in Maine before midnight. Comments are needed on the proposed changes to the Lifespan Waiver. Even a short message can make a big difference. Learn more and take action here: (If you know others who live in Maine, please share this with them!)
ow.ly/HYH450YY9YS
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Today’s Profound Autism Alliance Advocacy Network meeting is not to be missed. Hear from advocate Amit Basak about how Governor Healey’s groundbreaking profound autism plan became a reality in Massachusetts.
Register: mailchi.mp/profoundautism.or…
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Registration closes TODAY for Lurie Autism Center Coffee and Convo ☕ Join Amy Levitan and Judith Ursitti of @ProfoundAutism for a virtual discussion on the “services cliff,” caregiving, advocacy, and future planning. May 20, 6:30 p.m.
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Take action in Maine before midnight on May 13 (tomorrow). Your comments are needed on the proposed changes to the Lifespan Waiver. Learn more and take action here: (If you know others who live in Maine, please share this with them!)
ow.ly/LfTO50YY9YT
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Thinking of all the moms loving and caring for someone with profound autism today. The love runs deep. And so can the worry and stress.
💚 We hope you get a chance to exhale a bit today. Happy Mother’s Day.
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McCafferty's attorney said they've gotten few answers from the facility, but he believes Justin was left unattended for an extended period of time. "This innocent young man fell to his death from either the roof or a third-story window."
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Too many families struggle to find help when intense behaviors emerge.
Today, we begin round two of our national physician training initiative focused on improving care for people with profound autism and intense behaviors.
Learn more:
mailchi.mp/profoundautism.or…
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“What’s emerging from this and other research labs is not just a shift in thinking, but the early outlines of new treatments.”
washingtonpost.com/health/20…
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There is nothing wrong with having an intellectual disability.
Too often, efforts to reduce stigma create distance from people with the highest support needs, as though intellectual disability is something lesser.
An inclusive disability community values every kind of mind.
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