NCSA Public Comment to the IACC: Family Caregivers of Individuals with Severe Autism — June 2024
NCSA's June 2024 public comment to the IACC on family caregivers argues that the lifelong, 24/7 nature of extreme caregiving for individuals with profound autism is categorically different from typical caregiving — and demands targeted longitudinal research and equal IACC representation.
NCSA Public Comment to the IACC: Proportional Representation for Profound Autism — September 2023
NCSA's September 2023 public comment to the IACC argues that despite nearly 30% of autistic children having profound autism, the IACC devotes a disproportionate share of its time to higher-functioning individuals — and requests that 30% of each meeting be dedicated to profound autism and another 30% to intellectual disability.
NCSA Letter to the IACC: Against Sanitized, Neutral Language in the Autism Strategic Plan — October 2022
Signed by the full NCSA board, this October 2022 letter to IACC Chair Joshua Gordon protests the committee's move to cleanse the autism Strategic Plan of clinical language — arguing that sanitized, strengths-based language actively harms the severe autism community by denying the realities that justify federal research funding.
NCSA Public Comment to the IACC: Carve Out Specific Recommendations for Profound Autism — January 2022
NCSA's January 2022 public comment asks the IACC to explicitly carve out research recommendations for the profound autism population — a group exceeding one-third of all autism diagnoses that is systematically excluded from research yet requires the most intensive lifetime supports.
NCSA Public Comment to the IACC: Federal Autism Priorities for the Severe Autism Community — July 2021
NCSA's July 2021 public comment to the IACC outlines the community's highest federal priorities: honest clinical language, rejection of anti-parent prejudice, acknowledgment of exploding autism prevalence, maximizing the full continuum of residential and vocational options, and urgent research on therapeutics for dangerous behaviors.