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!

Besides, I don't like the idea of a whole lot of medical research into autism in the first place, whether it's NIH-funded or not.  Medical research into specific conditions is generally directed toward a goal of preventing, mitigating, or curing the conditions.  These are highly appropriate goals for cystic fibrosis, cancer, Huntington's disease, and muscular dystrophy.  I am sure that just about everyone who has cystic fibrosis, cancer, Huntington's disease, or muscular dystrophy would like to have a cure, so that they would not have the diseases anymore.  This is not the case with autism.  What are the goals of medical research on autism?  To "cure" me--to make me fit the world better by altering my ways of sensing, perceiving, thinking, feeling, and relating, until I'm no longer the same person?  To even out my autistic friends' oddnesses so that they're no longer the same people I know and care about and share my life with?  To prevent more people like me from ever being born?  To create a world that has no people like me in it?  These are the goals that I'm supposed to demand increase funding for?

Oh yeah, I'm being insensitive to parents again.  What about the suffering and misery that having an autistic child causes them?  Well, I know for a fact that there are at least some parents who are not unhappy and miserable about having autistic children, and do not want their children cured--though they'll move mountains to get appropriate education and support programs for their children.  I have yet to hear of even one parent of a child with cystic fibrosis or cancer who would be content to have a dead child, just as long as the child got good educational and support services.

I had a life-threatening blood disorder when I was younger.  For a year and a half I experienced restrictions on activities that had previously been parts of MY OWN "normal" life (not just activities that were part of someone else's concept of "normal life").  I experienced physical symptoms that were inherently distressing and frightening, and medical procedures that were unpleasant and painful.  I experienced the awareness that death was a much more likely possibility for me than it was for most people my age.  And I spent a lot of time sitting in the waiting rooms of pediatric hematology and oncology departments with emaciated bald children who were both younger and sicker than I was.

My life experiences have also included watching my brother's best friend grow from a rambunctious five-year-old into a thoughtful and vibrant young man--and then die of cancer at the age of nineteen.  And graduating from college with a young woman who, though she got sicker and sicker and weaker and weaker, nevertheless managed to complete her degree and receive her diploma--and then died of cystic fibrosis less than three weeks after graduation.

I wanted a cure for them, and I wanted a cure for me.  I'm glad there had been enough research into my condition that my doctors were able to bring me into a stable remission.  I want there to be more research, more knowledge, more and better treatments, so that people like Ken and Pamela can survive too.  So that more children like the ones I sat with in waiting rooms can survive, and so that they don't have to be made so sick by the treatments in the process.  So that children like me can be treated more quickly and less unpleasantly than I was.  This is where medical research funding belongs.

Does this mean I think there shouldn't be any funding or development for services for autism?  That autistic people will be just fine if we're left to handle things on our own?  No.  I just don't see medical research as the appropriate focus of funding and program development.

My life is definitely not "just fine" as it is.  I haven't been employed at all in almost two years, and in all my life I've earned enough to (just barely) support myself for only a four-year period that ended disastrously nearly seven years ago.  Is medical research going to help this situation?  No: I need educational and vocational supports, and a workplace where I can be assured that being employed doesn't mean being exploited and abused.  I don't have basic skills in self-maintenance, home management, or time management.  Is medical research going to help this situation?  No: I need skills training and environmental support.  These are not things that NIH funds, or that they should fund.

Spend money for autism on special education, vocational rehabilitation, supported living, and community accessibility.  But give my share of medical research funding to cystic fibrosis and cancer.  Autism may be many things to many people--a way of being, a way of relating, a sense of self, a sharing of culture, a strength, a challenge, a shield or a tool, a gift or an impediment.  But one thing autism is not is a disease.

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