Caregiver Topics and Perspectives
Parents and caregivers are at the heart of the conversation on Profound Autism. Their voices bring lived experience, hard-earned wisdom, and a depth of understanding that cannot be replaced by research or professional expertise alone. Through their stories, we gain insight into daily realities, the hopes and fears that shape family life, and the resilience that drives advocacy and change. Their perspectives remind us that meaningful progress is not just measured in data, but in the lives of individuals and families.
The Dignity Project.
To read stories from other families living with profound autism — or to share your own — visit The Dignity Project, an initiative led by the Profound Autism Alliance.
“We know that families living with profound autism, as well as the dedicated individuals who provide care and support, often find themselves in the shadows. Through The Dignity Project, we believe it's time to bring these stories to the light.”
Resources
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The Dignity Project (Profound Autism Alliance) – A platform for families to share and read personal stories.
Sibling Support Project – National organization dedicated to the lifelong concerns of brothers and sisters of people with disabilities.
Parent to Parent USA – Peer support and connection for families of individuals with disabilities.
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The Arc’s Center for Future Planning – Guidance on building long-term support plans for loved ones.
Special Needs Alliance – Attorneys specializing in disability and public benefits law.
ABLE National Resource Center – Information on ABLE accounts for saving without affecting benefits.
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Autism Speaks Toolkits – Practical guides on health, safety, and daily life.
Association for Science in Autism Treatment (ASAT) – Evidence-based information on treatment options.
National Institute of Mental Health (NIMH) – Resources on autism spectrum disorder and co-occurring conditions.
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Wrightslaw – Information about special education law and advocacy.
National Council on Severe Autism (NCSA) – Advocacy and resources with a focus on Profound Autism.
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Profound Autism Alliance – Advocacy and resources specifically for profound autism.
Autism Society of America – Local affiliates offering community programs and support.
Profound Autism Summit – A conference that welcomes parents and caregivers to join with professionals in learning from expert speakers across disciplines.
Online courses for purchase:
