On to a new adventure…

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.

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57 thoughts on “On to a new adventure…

    1. Thanks. I plan to keep blogging as I was, but perhaps add in a little more of the personal and autism elated posts since that is the life I will be leading!

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    1. Thank you for your sentiment.

      Actually, working on trying to develop a mouse version of your ACTB tools for evaluating cognition in Down Syndrome has been rather fun. I have also greatly enjoyed writing the manuscript for it, since I love thinking about translational science at that level. I have just been feeling a pull away from academics and toward my current path since 2008, and now was just when I finally got up the gumption to act on it.

      Who knows, if and when I have the opportunity to work with children with Down Syndrome, you may be getting a phone call from me with some questions…

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  1. Kudos to you for leaving academia to do the ‘hands-on’ work of helping people with autism-spectrum disorders. In this world, there is such a disconnect between what is considered valuable and worthy of respect and $$$, and what the real things of value are for people living with neurodevelopmental disorders. As you point out, any and all promising scientific research soon becomes hijacked by big PHARMA, as soon as a paper is published with findings pointing toward hope. Don’t beat yourself up too bad for the lies you told; we all delude ourselves until we finally see the light. Your intentions were honorable. Best of luck to you. I know you will find more fulfillment working face to face with these wonderful youngsters. Namaste 😀

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    1. I agree money is a hard thing to fight. I do blame pharma, but not as badly as I blame scientists. We know better. Pharma actually exists to monetize this stuff, we should be better than this.

      Thanks for the forgiveness. It feels good. I have had these feelings since 2008, so my plan is to just move forward. Hopefully toward better things…

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  2. Congratulations on the new job and best of luck with you. As someone with an ASD, it saddens me that drug companies only really care about sales instead of actually helping people with autism and other disorders. Showing love and patience to a child with autism will do more for them than any drug could ever do. I hope you’re able to make a great difference for the kids you’ll be working with.

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    1. I feel for you. I really do. We had my brother on too much. It saddens me.

      I can honestly say, though, I do not blame the drug companies as much as I blame the researchers. The drug companied literally are designed to make money off disorders. As scientists, it is our job to temper this and make it very clear under shat situations these drugs are appropriate and under which circumstances they are not.

      I do hope I can be useful for these kids by directly teaching them. Perhaps help unlock their ability to at least graduate high school so they can move on to do whatever it is they need to do with their lives to be happy and feel success in their life.

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  3. I did enjoy your honesty about drug trials; the self realization that you were “using” children for such a duplicitous cause…

    Your new plunge into the experimental is a discovery of whether or not you have the attributes to reach, and connect with these new test subjects; I hope you do, and I wish your pupils the best…

    I often think of autistic as super geniuses being taught by monkeys, us being the monkeys of course… Subjectively speaking in common approaches I have noticed with chagrin is; does one try and pull an autistic into our world or does one try and get into their world?

    Enjoy your adventure into the minds of others and I hope you’re enriched by the experience…

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    1. It was a hard realization to come to. Especially since introspection is not something I excel at. But when my late twin brother with autism died, I was forced to look very close at what I was doing and I realized I was uncomfortable with it.

      I agree autistic kids are geniuses and I am a monkey trying to make them excel. My brother was always WAY smarter than the teachers, and frankly than me.

      My goal is to actually treat each child as a snowflake and see if I can make them reach their potential. Half my day is helping a 6th grader excel (he has comorbid ADD), and the other half is teaching life skills and social skills to 1st and 2nd graders with autism. Definitely a challenge, but definitely worth it.

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  4. Congrats.

    I skipped out on academe right after the Ph.D. (not a scientific field) and have been looking for a job for a very long time. Despite that, no regrets.

    You’ll never wish you hadn’t changed course. It’s not just because of the work. Even as an unemployed person, there’s a lot that I get to do for me and others that vastly exceeds anything academe could have offered. And that’s the surprise that still awaits you.

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  5. Hi there, I am new to WordPress having just transferred my blog over from Blogger and your post came up as one I might like. Strange really because I am not a scientist but I do work in a school so the autism tag grabbed me and I read it. I just want to say well done you. I rather expect that you will find your new career much more satisfying and rewarding and I am sure with your wealth of scientific knowledge and bank of skills you will make a bit difference in the lives of the children and young people you come into contact with. So all the best as you move onwards and upwards.

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  6. Good for you! I know exactly what you mean about being interested in a particular social issue and getting caught between being directly involved or trying to change things indirectly on a bigger scale. Thank you so much for this blog – you may think that you haven’t done anything that directly helps people with autism but every day I learn something new about it and it informs the way I view autism and how I choose to help when I can. Raising awareness is huge. So well done.

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    1. Thanks!I appreciate your support for the work that I have done in the past. I hope I can take what I have done and what I want to do and marry them moving forward.

      I appreciate your support.

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  7. Good for you! A lot of scientists are cheering you on, as we all seek to satisfy the feelings that made us get into science to begin with, while managing to get paid at the same time. I suspect you will increase your followers, as parents, grandparents and siblings of people termed “auistic” look for understanding and guidance. I wish you well!

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    1. Thank you very much. I hope I can be helpful as I delve more into the challenges within education for children with autism. Especially into what precisely the role of a teacher should be in guiding the learning experience.

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    2. In education, there are so many challenges. First, many children are clumped into the category “auistic” so that their unque needs are met within budgets. Second, there are so many different types of autism that there is no silver bullet. Third, the teachers need to want to help rather than just get the year over wih.

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    3. I agree with you on the challenges. It is hard for school districts because they cannot diagnose, just classify. So any kid that would benefit from a small autism classroom would be placed there, not just autistic kiss. I feel my unique contribution comes in identifying snowflakes. In my small group classroom, of 13 kids we cover the spectrum of challenges. From nonverbal to highly verbal and socially phobic to socially needy. Understanding and responding appropriately to every child is the challenge indeed. Amen on number 3.

      Thank you so much for your input. I appreciate the feedback and any help or heads up that teachers, family, and the public want to give me…

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  8. I understand why you would want out of academia, but perhaps there needs to be someone who will change it for the better and allow it to be something useful and something that can help people.

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    1. I agree with you completely. Unfortunately, I do not see myself as that person since I refuse to play the games anymore. I hope one day someone can redirect science to actually work on a holistic approach to understanding and curing disease, but I, honestly, am not holding my breath.

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  9. Michael,

    Enjoy the journey. You do only live once.

    And stop to smell the roses once in a while. It makes all that cow manure you have to shovel in life worth it.

    Wayne
    Luvsiesous.com

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