A Personal Aside
I received some great news today that officially marks my exit from academics. I was offered and accepted job as a para-educator working with children at a range of ages with autism at a local elementary school. This definitely will not be a glamorous job, but I feel like it is an amazing opportunity for me. Needless to say I am ecstatic!
Over the last few years, I have been thinking a lot about what precisely I was doing as a scientist. In fact, I specifically blogged this question last year in reference to my late brother and how his influence has shaped my life choices.
To plagiarize myself for a moment, I ended that post with a question that I can finally answer…
Honestly, it has been some time since I have actually seen a true basic science paper studying autism. Basic characterizations are spun as revolutionary ideas begging for therapeutic application. Experimental results are patented before publication and spun off into companies on nothing more than a whim and a prayer. Controversial theories entirely unsupported by fact are announced as gospel truths on the gravitas of authority; and are subsequently used to cause harm to autistics under the guise of compassion.
And then all I do is I sit by and watch it happen. Right now thinking of this is frankly pissing me off. If all I have the power to do is to emphasize the good autism-related science on this blog and try to kill and discredit overblown, poorly interpreted studies via twitter, that is what I am going to do. I am done with sitting on the sidelines like an enraged fan screaming at the top of my lungs at a team that has long since stopped listening…
Now is the time for me to get involved… It is time for me to make the difference I have always felt compelled to make… My first step is to figure out how I am going to do it.
I can now answer my own questions
It has been bothering me lately that I have been spending a large portion of my life justifying to myself and to others the research that I have been doing. My justification has always been that what I am doing leads indirectly to improvement in life and quality of care for individuals with Fragile X-Associated Disorders, Down Syndrome, and autism spectrum disorders. I am coming clean here, this justification is a lie.
The type of research I was doing was specifically designed to create behavioral measures that would be useful for pharmacologists to test compounds. I had originally intended my work as a great way to take candidate drugs off the table at the preclinical stage, a sort of behavioral fast fail drug discovery. However, I learned relatively early during my graduate school experience that no one was really interested in my approach or my ideas. All anyone ever really wanted to know was whether my tests would provide them with significant drug effects so they could justify a clinical trial in patient populations. This always left me uneasy.
In hindsight, what I took away from my graduate and postdoctoral experience was that translational neuroscience was not something that I wanted anything to do with. Instead of being the mythical and noble from bench to bedside and back, translational had come to mean from cell culture to drug patent, consequences to the patients be damned. This shift really bothers me. My stomach turns because of my early life experiences watching well meaning (and perhaps not so well meaning) physicians and neurologists give my brother the newest fad drug off-label, and then simply ask my mother whether it worked, rather than actually taking the time to specifically evaluate Kyle’s behavior. In retrospect, I can pinpoint the moment I wanted out of academic science to the moment I had that realization, about five or so years ago.
So how am I going to make a difference
Long term, I plan to work with children, adolescents, and young adults with autism and other neurodevelopmental disorders in a classroom setting. My skills in behavioral analysis that I have honed during my scientific career will be an invaluable took when it comes to evaluating the problem behaviors in these children and my creative experimental design skills will help guide my solutions to helping these individuals overcome their challenges. As a first step, I have accepted a paraprofessional position working with 6th grade and 1st-2nd grade students with autism.
A thought entered my mind as I was leaving the interview from this position: I have finally come to peace with not being an academic. I now have the chance to directly help these kids, and I will be able to work to make their lives better. As I was driving home, a sobering thought entered my mind: in the course of my 15 year long scientific career, I never actually made a difference in the lives of any of the people that I have studied. Sure, I said that I did in public, but that was only to placate myself.
I still feel that it is rather funny a cosmic joke that I got into science because I wanted to help my brother, but since I have been in science, my mother has done more to directly help and change the lives of children with developmental disorders than I have. She does this every day…as a para-educator in the small town I grew up in.
It is my turn now. Time to get started, and time to finally make that difference.