Learn More About NCSA

Severe autism describes people with autism who, through any combination of functional, communicative, and/or cogntive impairments, need constant or near-constant care for their health and safety all through life. They may have little or no ability to functionally communicate and may have harmful behaviors like aggression, self-harm, and property destruction.

"Profound autism" is a newer, more administrative term developed for research purposes, while "severe autism" is the older, more widely understood term. NCSA uses both.

"Related disorders" are often genetic conditions that share many features with severe autism or, in many cases, may be considered monogenic forms of autism— such as Phelan-McDermid Syndrome, Angelman Syndrome, and SynGAP1-RD — because they also cause similar challenges and lifelong care needs. NCSA serves people with these conditions, too, whether or not they have a formal autism spectrum disorder diagnosis.

No. NCSA fully recognizes that autism affects people in many different ways, and every autistic person's challenges are real. NCSA focuses specifically on severely affected individuals because this group has been left out of most policy, research, and advocacy work. NCSA fully supports self-advocacy to the fullest possibility. We exist for those who are unable to effectively self-advocate to ensure their needs are still part of policy decisions.

No. Most common autism organizations have shifted focus toward people who can self-advocate, leaving those with severe autism without a voice in policy and research decisions. NCSA was founded in 2018 to fill that gap.

Yes, strongly. NCSA supports thorough science into what causes autism because understanding the causes is essential to finding better treatments. Researching causes is not the same as wanting to eliminate people with autism.

Because people with the most severe autism, those who cannot functionally communicate for themselves and need around-the-clock care, are consistently left out of common autism advocacy and policy talks. NCSA exists to make sure this group is counted, heard, and served.

NCSA believes families and caregiver voices carry real weight in policy because they speak for loved ones who cannot advocate for themselves. NCSA amplifies those voices through federal and state policy work and connects families through the NCSA National Grassroots Network.

NCSA supports a full range of living options, including group homes, family-based care, and specialized settings. The current shortage of proper housing and trained support staff is a crisis, and NCSA pushes for solutions at both the state and federal level.

Contact info@ncsautism.org. You can also join the National Grassroots Network to participate in advocacy and stay connected with families across the country.

Make a tax-deductible donation to NCSA. Every gift funds advocacy, policy work, and public education. You can also join the free NCSA National Grassroots Network to help drive policy change in your state and at the federal level.