As a PANS/PANDAS organization, our involvement is important. PANS/PANDAS can occur in autistic individuals, and the Plan’s increased attention to co-occurring medical conditions and neurodevelopmental regression creates an important opportunity to investigate the role that infection, immune dysfunction, neuroinflammation, and other neuroimmune processes may play in some cases of regression and significant changes in functioning.
We also do not support efforts to stall implementation of the Strategic Plan. The Plan reflects years of stakeholder engagement, scientific evidence, lived experience, and public comment, including extraordinary participation from families and advocates this year. The needs identified through this process have been documented for far too long without adequate action.
There is more work to be done, and there will always be areas where members of our diverse communities disagree. But delaying implementation does not move research, care, or support forward.
We cannot go backward. We must move forward.
Gabriella True
