Misalignment in autism
FDA workshop reveals diversity of priorities among autism patients, caregivers
FDA’s Patient-Focused Drug Development meeting on autism revealed two different stakeholder groups with rather different priorities. Individuals with autism who were able to speak on their own behalf said their primary concerns are not autism per se, but depression, anxiety, communication, self-harmful behavior and quality of life -- and they don’t necessarily expect much help from drugs.
At the May 4 meeting, they said FDA and companies developing drugs have focused too heavily on improving repetitive behaviors or restricted interests. In fact, they said, reducing repetitive behaviors -- such as stimming, or engaging in repetitive motions like hand-flapping or rocking -- would deprive autistic people of a coping mechanism without necessarily alleviating the underlying problem.
“Therapies that suppress autistic traits hurt autistic people,” said Kathleen Mead, an autistic adult who spoke at the meeting.
These individuals do not think of autism as a disease that needs to be treated. They just want help with the aspects of autism and the mood disorders that come with it that make their lives difficult.
“If something gives me