6:54am January 8, 2012

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This column was originally posted on ANI-L after I read a message somewhere else complaining that the National Institutes of Health fund more grants for research on cystic fibrosis than for autism, even though autism and cystic fibrosis have about the same frequency of occurrence in the population. The message then went on to compare the frequency of occurrence and the number of grants funded by NIH for childhood cancer, Huntington’s disease, and muscular dystrophy. It urged people to contact their senators and representatives and ask them to explain why cystic fibrosis research gets four times as many grants as autism research.

I don’t think the answer to that should be very difficult: Cystic fibrosis, cancer, Huntington’s disease, and muscular dystrophy are diseases! They make people sick. They cause incredible amounts of suffering and misery, and they kill people. Of course NIH ought to fund research into these conditions!

Autism is not a disease. It does not make people sick, and it does not kill people. There are different opinions about how much suffering and misery autism causes. Some people do suffer a lot from it, while for others the suffering is caused primarily by other people, not by autism. But even at its most devastating, the people most directly affected by autism–those who are autistic–tend to report a great deal less suffering as a result of their condition than people with cystic fibrosis report as a result of theirs. Maybe cystic fibrosis research receives more funding than autism research because CYSTIC FIBROSIS IS A DEADLY DISEASE THAT MAKES PEOPLE SICK AND MISERABLE, AND THEN KILLS THEM!

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Jim Sinclair, Medical Research Funding

This is the quote I originally went to Jim’s old site to look for and got distracted. Seriously, read the whole article though. It’s disturbing how little has changed since xe wrote it. I went back to find it because I could not find anywhere near as detailed and eloquent response myself, when reading people actually complaining that autism should get as much research as cancer and AIDS just because it’s more common. Which is really offensive to just about anyone who’s gone through these diseases either themselves or with loved ones. Deadly diseases get more research because they’re deadly. I’m glad for the cancer research that saved my father’s life, and I’m grateful that there is more of it than autism research.

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