"Normal" Is A Dryer Setting

Parenting A Child On The Autism Spectrum


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The Explorers

A ship in port is safe, but that is not what ships are for. Sail out to sea and do new things. ~ Rear Admiral Grace Hopper

Lake Superior, Minnesota side

Lake Superior, Grand Marais, Minnesota

Last week I spent my lunch hour and beyond discussing my career path with the sweetest fourteen-year-old I have ever met. She will be starting high school this fall and is interested in a career in biomedical engineering. One of my coworkers had her tour our company for a day, meeting with people from different functions, to help her see what The Real World is like and hopefully glean some advice and guidance.

One question curious minds frequently ask me is how I got to where I am today in my career. The general assumption always seems to be that I made some kind of conscious effort or decision to move in a certain direction. I have moved, but not in a deliberate, well-planned-out-kind-of-way. Rather, during my time working in industry, I have gravitated toward where I am most comfortable. Here is a biology analogy to help explain:

No energy expenditure for me so far.

The sciencey explanation of my career path.

The cells of your body have different transport mechanisms to move molecules in and out. Active transport requires energy, which is ATP (thus the lightening bolt). Passive transport does not require energy, and molecules tend to move from higher to lower areas of concentration. If you think of a crowded party, active transport could be the host or hostess packing everyone into one corner like sardines. The diffusion form of passive transport is where people disperse themselves more evenly depending on where the food or music is. Facilitated diffusion would be where the host takes one or two people and moves them to another part of the room.

Diffusion allows molecules to go where they are most comfortable, where they would naturally be found in an environment. They stop moving when they reach an equilibrium, which is a state of balance. While all forms of transport in and out of a cell require movement, some expend more energy than others. There is also only so much energy to go around.

My energy for the past almost sixteen years has been used up exclusively in raising my son. While I enjoy my job and do my best every day, I have not performed extraordinary feats of energy expenditure to move up in the company. If I did, I would be exhausted, burned out, and not a good parent or role model. I do not tell people this, especially fourteen-year-old children who are just starting their careers, when I first meet them and they ask about my career path. I actually don’t mention this to my best friends. The only way people notice is by paying close attention to where my own attentions lie.

So if I don’t tell people that actively pushing myself forward in my career would have resulted in my becoming a perpetual Medusa day in and day out, what do I tell them?

Here it is.

I went to graduate school for cancer biology. When I had permission from my thesis committee to begin writing my thesis and look for jobs, here were my options:

1) Stay in academia. No way Jose. At the time, the NIH funding rate for grants was at a low of approximately 10%. That means that for every 1000 grants submitted, only 10 were being funded. As a single parent, there was no way I was going to take a chance on an academic career. Tenure at an academic institution is based largely on how many grants you have funded and how many publications you have in scientific journals, and the first five years can be rough. I knew if I went into academia I would have no time left over for my home life.

2) Teach at a liberal arts institution. This was a definite possibility, except that jobs are highly competitive and few and hard to find due to the fact that they are really good jobs. A liberal arts college or university usually has smaller class sizes, and as an instructor you have the opportunity to become closely involved with your students and in campus life. My last year of graduate school I taught Advanced Microbiology at Augsburg College in Minneapolis and loved it. Several years later, I am still in touch with several of the students who were in my class. Since we were close in age when I taught them, they are now my friends.

3) Do a post-doctoral fellowship for the government. I interviewed for several NIH positions in several parts of the United States. If you want a post-doctoral fellowship that offers you a lot of career options upon finishing, I would highly recommend looking at the NIH. The military also has post-doctoral fellowships, and one of the perks about working on a base is that, as an employee, you may enjoy the same benefits the soldiers do. I almost went to work for the NIH, but then this happened….

4) Go into industry, which is what I did. My graduate school advisor told me repeatedly that this was a definite yes based on my personality and the way I worked in lab, but being who I am I didn’t listen to him. The way I got my industry position is also kind of a fluke, which has started to make me feel a bit guilty when trying to give other scientists advice on how to get into industry. One afternoon while filling out NIH applications, an email popped up in my inbox from my advisor. He had forwarded me a note from the chair of the department with a job opening in a local industrial corporation. On a whim I submitted my resume, and thank goodness the hiring manager couldn’t open it the first time because when I showed it to my advisor he freaked out and made me revise and resend it. When the hiring manager opened it the second time, he called me the next day to come interview for the position. I was one of four applicants, and I ended up being the person who got the job.

I didn’t get my industry job based on my scientific skill set. I was offered the job for two reasons:

  • First, I interviewed very well. Social skills, as I told my fourteen-year-old lunch companion, are critical to having a successful scientific career. You can be the most brilliant scientific mind in your field, but if you are unable to communicate both verbally and through writing and / or get along with your coworkers and / or represent your company in a professional manner and /or resolve conflict when it arises, and I promise you it will, forget the job offer.
  • Second, I was my advisor’s first graduate student. As the first graduate student, I had my choice of projects, which was wonderful. I also spent an inordinate amount of time helping get the lab set up and running. I trained most of the undergraduates, ran our facilities and ordered supplies when we were between technicians, and actually had a large say in the research direction the lab took based on how my thesis project shook out.

Now we are at the point where I am a cancer biologist working at an adhesives company. I have been at this company for almost a decade, and I have never once been in danger of losing my job, or if I have, no one told me about it. I always have more than enough projects to work on, and three of those have turned into actual products that our company sells. If I do happen to have a few slow weeks, the curious cat part of me starts noodling around with my coworkers to come up with new ideas. Sometimes I have a specific project to work on, but usually it’s more of a concept, a vision that someone has in his or her head. My job is to make it happen and dictate size, shape, color, smell, and so on. The best part of my job is that I learn something new every day.

I spent the first four years of my industrial career in lab, all the time, every day. I love working in lab. Cell culture is meditative to me, with all of the repetition and routine. Trying new procedures and tweaking old ones, such as ELISAs, are always fun. If you need things to work the first time, every time, lab may not be the right place for you to be. For me, however, a failed experiment meant one option crossed off the list and new avenues to explore. The best part is when you get a result and think to yourself, “Hmmm…this is…interesting.” And then the next experiment blossoms up in your mind.

The way I left lab was very circuitous and not something I planned. It was passive, not active. I was assigned as the technical lead on a major program for our group, and in addition to the lab work, I started organizing our weekly meetings. I also became the person who wrote the technical updates, made update slides in Powerpoint when our manager needed them, and putting together our project reviews. I made sure the team stayed on task, kept to our timeline, and maintained good communication with the product development part of our company. If this is sounding less and less like a techie position and more like Project Management, you are spot on. The best part was that I was unwittingly evolving into a Project Manager. A part of myself that I never knew existed had emerged.

After our team finished that project, I started looking around for something new to do and went back into lab. That lasted all of three months until my technical manager asked me to initiate a new platform. A platform consists of several inter-related products, so by saying yes to the request, I knew that I would be unofficially stepping out of my technical role and into a full time Project Management position. The caveat, however, is that the part of the company I was in rated the employees on technical accomplishments. There was no Project Management career path, only technical or supervisory. I believe in bringing my genuine, true, and honest self to every situation, however, so I began managing our platform. The best part was helping advance the careers of the scientists on my team and watching the project progress.

It all paid off because I was offered the job I have now for two reasons:

  • First, I have an excellent track record as a Project Manager, previously unrecognized as it may have been. My teams function well together. We communicate at all levels, from our summer interns up to our most important stakeholders. I figure out what my assigned scientists excel at and help them succeed in their own careers. The projects I manage stay organized, on schedule, and we deliver sound technologies that are able to be commercialized. I also do not fear conflict and try to use it to strengthen our team instead of letting it tear us apart.
  • Second, I am a risk taker. I do not always do what everyone else does, and often I go on my own way, about my own business, and keep time to my own music. This is not hostile, rebellious, or disrespectful on my part. It is simply part of who I am. I started performing a Project Management function because that is where I was able to offer the most support to my team. I have gone against the grain like this multiple times in my career, often in small ways. Sometimes it is noticed, and sometimes it is not. Sometimes it pays off, and sometimes it does not. When taking a risk works in your favor, however, the results can be significantly life changing.

Now after over half a decade of Project Management under my belt, I am considering yet another transition into Technical Management. After being at my company for only two years, my supervisor at the time strongly encouraging me to go into Technical Management. I did not actively pursue that career path at the time because it felt like a forced fit. I wanted more time to be in the laboratory running experiments and figuring out where I fit in and what I wanted to do with my career. Now, years later, the opportunity for Technical Management has been offered to me again, and this time I am strongly considering taking it. The position is not something I sought out. It came to me because I have a strong network of coworkers throughout the company. Networking is a critical component of career success in any organization, and it isn’t always the quantity of people you know. Sometimes a few excellent connections is all it takes.

My fourteen-year-old left with a big smile on her face and shining eyes after we walked up from my building’s cafeteria through some of the labs on my floor. She saw her future unfolding before her, knowing that she had a lot of work and dedication to do to reach her goals. This is where all of the best parts of all of the bits and pieces of my career add up to one Big Beautiful Best Of Everything – watching a fledgling scientist dip her toes in the water and wonder what lies on the other side of the shore.

 

 

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The Nice Pitbull

I now see cancer for what it is. It rips families apart. ~ John Ohlfest, Ph.D., Associate Professor, University of Minnesota Department of Pediatrics, Division of Pediatric Blood and Marrow Transplantation and Department of Neurosurgery; Director of Department of Neurosurgery Gene Therapy Program and Gene and Stem Cell Core Facility; Hedberg Family/Children’s Cancer Research Fund Chair in Brain Tumor Research

When I was nearing the end of my graduate school program, either my fourth or fifth year, I don’t remember exactly, one of the immunology professors on my floor caught me in the hallway and told me he wanted to talk to me for a minute. This was highly unusual because, if you have ever been a graduate student, you know there is a pecking order. A caste system. A hierarchy. A glass ceiling. Whatever you want to call it, it is an invisible barricade that separates graduate students from the rest of the scientific world. We, ourselves, are invisible, neither here nor there. We aren’t technicians, so we don’t manage the lab. We aren’t postdoctoral fellows, so we have no advanced degrees under our belts. For five years, I spent my time working 70+ hour weeks as a cancer biology graduate student with almost no acknowledgement from my superiors of my existence as a human being. This professor in particular did not associate with graduate students. He did not look at you when you passed him in the hallway. You did not speak to him, especially if his office door was closed. If he was on your thesis committee – watch out – he was one tough cookie and there was a chance you may walk out of your program with a Master’s degree instead of a Ph.D.

So, what did he want to talk to me about? What did he have to say to me, such a long time ago. He had watched me struggle as my advisor’s first graduate student, which involved setting up his lab, supervising the endless undergraduates that migrated through his lab, generating data at the drop of a hat to help him write his grants, all while trying to get traction on  my thesis project. This professor also watched me go through a divorce while a graduate student and adjust to life as a single mother with a preschooler who had a disability. He had also watched me walk through some other issues and challenges that I won’t mention here. He was watching me the entire time, and I had no idea.

When he pulled me aside he was visibly nervous (Ack! Human interaction!) and he struggled to spit out his words. What he told me was that when I started in his department’s graduate program he thought I was a lightweight. I had done a rotation in his lab as a first year student, and at the end he wished me luck elsewhere. Now he was eating his words. He told me, in the back of the hallway by the stairwell, that I had been faced with what most other people would have considered insurmountable challenges, and that most other people in my position would have quit. He was apologizing for judging me too quickly.

I was never invisible after that. This professor and I went our separate ways after I earned my doctorate. I took a job in industry, and he became the Vice-Dean of Research for the University of Minnesota Medical School. We’ve seen each other a few times over the past several years, and each time he asks me if I’m running the company yet. It’s nice to know I’m missed.

Last Friday at 10:30am I stepped into the narthex of a church in Roseville and stopped to survey the crowd gathered therein. I saw the guest register, and when I looked to my left I saw this professor standing, his mouth hanging slightly open, looking around in shock for a familiar face. I walked over to him, took his elbow, and said “Hello.” When he turned to me he flung his arm around me in a bear hug, pressed his mouth to my ear, and said, “I am so glad you are here. It’s so good to see you.” Then he let me go and we moved forward to sign our names and look for our respective groups of people.

John Ohlfest, Ph.D.We were at a funeral for John, a scientist who was in graduate school the same time I was. He flew through his graduate program in a record 3½ years, did an extremely brief post-doctoral fellowship, and was offered an assistant professor faculty position at the University of Minnesota all by the time he was 28 years old. The rest of us watched in amazement as he blossomed and grew not only as a gene therapist investigating cures for brain tumors but also as a leader in his field. He received tenure when he was 32 years old, with the average age being 43.

In addition to being a brilliant scientist, driven to study tumor biology after watching his grandmother’s struggle with ovarian cancer, John was also a really nice person. He was down to earth, honest, and hardworking. His colleagues described him as a nice pitbull, where despite his gentle demeanor he wasn’t afraid to argue a point during a lab meeting. John enjoyed fishing, family, and animals. He met his wife while they were students in the same lab, and in 2008 they married and have two small children.

Their lab was in the same room as mine when we were students. His future wife’s desk was behind mine, and she and I spent time with the other people in our room eating lunch together, attending seminars together, and sitting all up and down the hallway for coffee breaks much to the chagrin of the professors. I guess we became visible when we did something they didn’t approve of. The thing is, if you have a 5 minute incubation and are in the ninth hour of an eleven hour day, and you have been at work on your feet since 6am because the entire Western blot needs to be done from start to finish NOW, sitting in the hallway to grab a drink and socialize for a minute starts to look alright. We all got to know each other pretty well over time. We practically lived together.

It never occurred to me that the professors were watching us. Now, in retrospect, I see that they grew to consider some of us as their own, whether it was children, colleagues, or friends. They miss us when we go on to start our real careers, and outliving us crushes them. It’s not something they expect to experience.

John was diagnosed with cancer this past summer. When John called his supervisor to tell him he was ill, he told him he finally understood the true impact cancer has not only on the patient but on the family as a whole. John’s colleagues contacted everyone they could in their cancer research network, and he received the best treatment possible. However, it just didn’t work. And it’s just so sad. I don’t see where the good part of this is, and I am the eternal optimist. A cancer biologist died from the very disease he had dedicated his life to eradicating.

John, we will miss you. I am so sorry for your parents, your siblings, and your beautiful wife and children. And Tilly your pitbull, who I have heard is kind, just like you.

Here are some links if you would like to read more about John Ohlfest:

John’s research profile at the University of Minnesota:

http://www.med.umn.edu/peds/bmt/faculty/john-ohlfest/home.html

Ohlfest Brain Tumor Lab at the University of Minnesota:

http://www.braintumorlab.com/

The story of Batman, the first dog John successfully treated:

http://blog.lib.umn.edu/mmf/news/cancer/2009/canine-connectionsfrom-cancer-to-epilepsy-dogs-are-informing-human-medical-care–and-vice-versa.html

University of Minnesota Masonic Cancer Center announcement:

http://www.health.umn.edu/healthtalk/2013/01/23/renowned-brain-tumor-pioneer-john-ohlfest-ph-d-dies-after-his-own-battle-with-cancer/

Minnesota Public Radio announcement:

http://minnesota.publicradio.org/display/web/2013/01/23/health/minnesota-cancer-researcher-dies-of-cancer

Children’s Cancer Research Fund announcement:

http://www.childrenscancer.org/ohlfest/


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The Body Farm

Take me out tonight / Where there’s music and there’s people / And they’re young and alive. ~ There Is A Light That Never Goes Out, The Smiths

“What is that? Is that cooked?” asked my manager in line across from me at our company clubhouse’s lunch buffet today.

“No…well, not really. It’s cured,” I replied, and as a result she promptly passed up the lox and moved on to choose a fire-roasted option.

I, on the other hand, joked to my coworker behind me (Mickey from the Monster Dash) that I was about to discard my 9-inch lunch plate and pick up the entire platter of salmon instead. Not only was the lox rolled up into delicious curls of pink fantabulousness, but the condiments included diced hard-boiled eggs, red onions, capers, and a dill sauce. It is at times like this when I realize I have lived in the northernmost reaches of the United States for a very, very long time. I ended up choosing three rolls of lox, sprinkling all the condiments on top, and accompanying it with fresh fruit, pickled vegetables, and a bit of pasta salad.

Some decisions, such as what we choose to put into our bodies, are entirely a matter of personal preference. We know what we consider to taste good and what doesn’t, whether it is a matter of flavor, texture, viscosity, or smell. This is why buffets are popular choices at dining establishments – there is something for everyone. I rarely eat out, and when I do I don’t do buffets because I am full after one plate. When my company is footing the bill, however, I can’t put up much of an argument. Our team had an offsite morning today, which included lunch at the end, so I loaded up on lox.

When my girlfriends and I went to eat a few weeks ago, at our usual monthly Girls’ Night Out, we ended up at the Twisted Fork Grille in St. Paul’s Mac-Groveland neighborhood. The Twisted Fork Grille uses locally sourced ingredients and serves everything from fish tacos to a roasted pear salad to bison burgers. The menu, much like a buffet, has something for everyone. The trick to the Twisted Fork’s menu, however, is in the details. The dishes start with a staple ingredient, such as roast chicken, but then the chefs add in a wild mushroom risotto made with a tomato-garlic broth and asparagus on the side. When something strikes you on the menu, you feel as if it has been designed just for you.

That night my girlfriends and I discussed several individual decisions, such as how to update resumes, move up in our respective career paths, whether or not to discipline a preschool daughter’s naughty friend during a playdate the mother was hosting, and how to handle an upcoming exploratory surgery for a health disorder. We had a lot to talk about, and instead of being hush-hush we were…out there. Loud and not embarrassed in the least. We only do this once a month, and there were several topics on the docket to discuss on this particular evening.

While we were in the middle of discussing Girlfriend #1’s whole dilemma of to-discipline-or-not-to-discipline-someone-else’s-naughty-hellion-while-hosting-a-playdate-in-your-beautiful-new-home-with-beautiful-new-carpet-and-beautiful-clean-walls-because-the-biological-parent-isn’t-stepping-in-because-well, after four years of this nonsense none of us can figure out why, I put my signature on a few sheets of paper and passed them to Girlfriend #2 on my left. She put her resume aside, signed her name, and handed it to our other girlfriend sitting next to her. Girlfriend #3 glanced down at it, pulled out a pen, and signed her name too. When she passed the signed and witnessed documents back to me, I said “Thank you”, they both nodded, and we moved on to the next topic of discussion which was Girlfriend #4’s recent trip to her homeland of Turkey for her youngest sister’s wedding who looks like a supermodel and now has a beloved husband and two bonus sons. As I was talking to Girlfriend #4 about the wedding, Girlfriend #3 said, “Oh, you two…let me take a picture. You look so happy.” And we were, and the papers went back into my handbag for the remainder of the evening.

So…what are the papers? Why did I need two witnesses? It’s not a patent application, but once signed and witnessed, these papers become a legal document which is actually one of the most important decisions I have made in my life so far. My Girlfriend Witnesses  already knew it was coming, and they fully support the individual decision I have made about a universal occurrence:

Death

It is an imminent arrival for all of us, and if we are fortunate, we don’t know when or why it’s coming. Life does tend to throw its curveballs though.

I am young, and healthy, and plan on living for a long time. Being alive is fun to say the least. I want to live to be 100 so I can tell people “I am 100 years old.” How many people have the opportunity to do that? The issue at hand is that I have a 14-year-old son with an autism spectrum disorder, and while I can plan my future to my heart’s content, there are some parts I can’t control. When my number comes up, it’s done. Ideally I will outlive my son Timothy because he needs me in his life to function. After not planning for fourteen years, it’s time to start putting my affairs in order Just In Case. I have yet to do a will, or an estate, or a trust. I started with the easiest step first, which is where I will physically end up.

I just made my body donation official! I am sitting with my lovely Turkish girlfriend.

I donated my body to the University of Tennessee’s Forensic Anthropology Center, also known as The Body Farm. This research facility studies human decomposition. The documents I signed and my girlfriends witnessed were my application forms. These forms are now on file at the University of Tennessee, and I received a letter stating that I have been accepted into the program as a research participant.

The unanswered question for me is: What would draw someone to choose a research career in human decomposition? I don’t know. I don’t like to think about it. I figure in the buffet of vocations, there is something for everyone. Forensic anthropology is formally defined as the examination of human skeletal or decomposing remains in a legal setting to determine the cause of death of establish the identity of unknown individuals. This type of research is necessary and highly useful for

  • Estimating time of death
  • Human growth and development
  • Genetics
  • Effects of lifestyle
  • Trauma injuries – includes blunt injuries, ballistics, and so on
  • Demographics – how our population changes over time
  • Forensics studies of all sorts

I have never wanted a funeral, never. Not since I was a child and learned what happens when you die. For me, personally, it’s a waste. I would rather gift my body to a useful purpose that will benefit society and have a memorial service if people need closure. It’s the ultimate in recycling and giving back to your planet. This choice isn’t for everyone, but it is the right one for me. The Kentucky-Tennesee area is gorgeous, I have a strong family history in that part of the country, and I would love nothing better than to spend the remainder of my remains lying outdoors in a peaceful place. I also am passionate about any kind of science, and I consider this collaborative research.

Interested in learning more about the University of Tennessee’s Forensic Anthropology Center? Here is the official link:

http://fac.utk.edu/

There are no photos on the website, so browse away without trepidation. There are YouTube videos on other websites, not UT’s, that I did not want to watch and will not list here. The only video link you’ll find in this particular entry is the one to The Smiths. The University of Tennessee’s website contains donation information, forms, faculty profiles, and lists of presentations and publications here. Some key points are

  • You become a permanent part of the facility upon your arrival. Bodies are not returned to families nor are they embalmed.
  • Your body will be used for research and teaching. The university pays for your transportation. There is no monetary reimbursement to you or your family for donating.
  • You can be an organ donor and still donate your body.
  • The facility does NOT give tours.
  • You may also donate your skeleton or cremated remains.
  • Monetary donations are welcome if you want to contribute without donating your body.
  • The facility is always accepting donations and always expects to.
  • Your family may choose against donating you when the time comes. The most you can do is express this as your wish.

Life is all about choice. That’s what makes us unique and keeps everything so extraordinarily interesting. With all of the unexpected twists and turns life takes, however, I feel an immense amount of comfort and safety in knowing where I will eventually end up. Tim wants to donate himself as well, and as his (responsible!) parent I told him that while I respect his decision, he needs to wait until he is sure of what he wants. When he is much older, he may find himself in the same position as I am, where I have felt a certain way since I was small. Then he will have the choice to choose the end of his path.


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The Benchmark

γνῶθι σεαυτόν (Know thyself) ~ Socrates

Elliott Hall on the University of Minnesota campus.

This past week Tim and I took the morning off so he could be administered an ADOS test at the University of Minnesota. This is the same clinical study he participated in a few months ago, and this time instead of the professor traveling to us, we traveled out to her. ADOS stands for Autism Diagnostic Observation Schedule, and the test is considered a gold standard for assessing and diagnosing autism and pervasive developmental disorder (PDD) across ages, developmental levels, and language skills.

The ADOS is a semi-structured, standardized assessment instrument designed to elicit communication and reciprocal social interactions in children who has fluent language. It includes a number of play-based activities, such as constructing block designs. It also includes activities that require language, such as telling a story from a book, demonstrating a routine activity, and describing a picture. In addition, it includes conversation and questions that tap into the insight of emotions, friendship, and social difficulties.  There are four modules to the test, each taking approximately 45 minutes, and the modules are administered one at a time.

Module 1: For children who do not consistently use phrase speech. Activities include:

  • Free Play
  • Response to Name
  • Response to Joint Attention
  • Bubble Play
  • Anticipation of a Routine With Objects
  • Responsive Social Smile
  • Anticipation of Social Routine
  • Functional and Symbolic Imitation
  • Birthday Party
  • Snack

Module 2: For children who use phrase speech but are not verbally fluent. Activities include:

  • Construction Task
  • Response to Name
  • Make-Believe Play
  • Joint Interactive Play
  • Conversation
  • Response to Joint Attention
  • Demonstration Task
  • Description of a Picture
  • Telling a Story from a Book
  • Free Play
  • Birthday Party
  • Snack
  • Anticipation of a Routine With Objects
  • Bubble Play

Module 3: Fluent children. Activities include:

  • Construction Task
  • Make-Believe Play
  • Joint Interactive Play
  • Demonstration Task
  • Description of a Picture
  • Telling a Story from a Book
  • Cartoons
  • Reporting a Non-Routine Event/Conversation
  • Emotions
  • Social Difficulties/Annoyance
  • Break
  • Friends/Loneliness/Marriage
  • Creating a Story

Module 4: Fluent adolescents and adults. Activities include:

  • Construction Task
  • Telling a Story From a Book
  • Description of a Picture
  • Conversation and Reporting
  • Current Work or School
  • Social Difficulties/Annoyance
  • Emotions
  • Demonstration Task
  • Cartoons
  • Break
  • Daily Living
  • Friends and Marriage
  • Loneliness
  • Plans and Hopes
  • Creating a Story

I was able to look through a copy of the test while I waited.

Tim was administered Module 3. Our professor told me that part of the test involved how he views romantic relationships and plans for the future. She escorted me to the cozy graduate student library, where I spent the next hour reading a book and drinking a coffee…shaping up to be quite the nice morning indeed. Tim’s interview took over an hour, and when he was done his interviewer told me he did very well.

Here are Tim’s results:

  • Tim was a bit tense initially, but warmed up about 10 minutes into the test. Initially he did not engage in the action figure play and did not join in play with his interviewer. However, he smiled when his interviewer”s soldier fell, and when asked how’s the story going to end, he pushed his action figure down.
  • In terms of language and communication, Tim reported several non-routine events, including trips he took with me to Florida and Indiana, my brother’s wedding he attended two summers ago, and dissection of frogs in his biology class. He did not, however, ask for information from the examiner. Tim’s speech was rather flat, slow and halting at times. He did a great job telling a story from a book and did a good job telling cartoons to another person. Tim demonstrated limited use of gestures with speech, and limited eye contact.
  • In terms of reciprocal social interaction, Tim showed some enjoyment in the interaction. He also demonstrated good insight about long-term relationship, but provided limited information about friendship. Overall, the quality of social interaction was sometimes comfortable, but not always sustained.
  • Regarding stereotyped behaviors and restricted interests, they did not notice any unusual sensory interest, motor mannerisms, or specific interests in the course of the test.
  • Overall, Tim meets the cutoffs for autism by ADOS standards, with a severity of 7 on a 10-point scale. He will continue to receive the Asperger’s diagnosis on the DSM-IV, even when the new guidelines are introduced by the American Psychiatric Association.
The ADOS test also clearly shows that Tim’s intellectual functioning is very high, with superior performance on the block design, excellent verbal description of the cartoons, pictures, and books.

Before we left, our professor asked us if Tim would be interested in participating in more studies with her in the future. Tim agreed immediately, for a couple of reasons, one being the $20 in cash he now had in his pocket and the second because he is interested in learning more about his Asperger’s. What I love about Tim is that he is self-aware. He knows that he has special needs, he knows that he is different than other people, and he knows that this difference comes with advantages and disadvantages. His self-awareness and curiosity will be key to his success in life. Every study he participates in, no matter how small, also helps pave the way for progress in the field.


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The Grasshopper

I lost my sense of passion and direction to protect myself from hurting and despair. ~ Heart of Stone, Erasure

Last week at work our group had a poster session, just us. This is the first time in the seven years I have worked at this company that our small cluster has been highlighted. Usually we get pushed down to bottom of the pile, under all of the optical films, adhesives, and nonwoven technologies. We had one executive come through who was particularly hostile at my poster, but his mood changes at the drop of a hat, so I shrugged him off, figuring he was having a bad day.

Later in the afternoon my coworker Crixus and I were standing around in my lab talking. We call him that as a joke. He is named after the character in the Starz series Spartacus: Blood and Sand. He started it by calling Daniel “Dominus”, after John Hanna’s character, and Daniel started calling him “Crixus” since he is as physically strong as an actual gladiator. He finished last summer’s Warrior Dash in about 20 minutes, and he is the person who held my hand off the Leap of Faith at our Mudrun last fall.

Anyway, I digress. Crixus and I were shooting the breeze when in walks The Grasshopper. One of our newer employees, I actually call him Grasshopper because he has a desire to learn, to work hard, and continually asks questions to help advance his knowledge on, well, everything. He asks about how we know when to file a patent, whom he should inform when he goes on vacation, and recommendations for a good dentist. On this particular afternoon, however, he walked into my lab distressed.

He wanted to know why the angry executive liked everyone else’s posters except for his. I told him that the angry executive was angry at my poster too, and, as I later found out, he was actually angry at ALL the posters. Crixus, for all of his brute strength, informed us that when Angry Executive made his grand entrance, he actually left the room and hid since he is a recent addition to our group that the executive may have not officially OK-ed yet. I told both Crixus and Grasshopper that I don’t really care what Angry Executive thinks at this moment because overall he is supportive of us, and everyone has bad days. My guess was that something set him off in the morning before he came over to our building.

Grasshopper left feeling warm and comforted instead of being a tiny spot rubbed into the carpet. One of the most difficult positions for me to put myself into is that of the other person. The Merriam-Webster Dictionary defines empathy as “the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner”. That is some heavy duty stuff. If my coworkers and I have a hard time being empathetic, imagine how Tim feels. His world can get rough sometimes due to his lack of being able to see the other person’s perspective.

The longer you are a scientist, the thicker your emotional exoskeleton becomes. It has to be or else you don’t survive. We are constantly having our data and results called into question, mostly because what some of us work on, like Daniel, Crixus, and myself, are products that keep people healthy. The product Daniel launched in December is a diagnostic kit for the food and beverage industry. This allows manufacturers to test for pathogens in their food before they ship to groceries and restaurants. Imagine the consequences if people didn’t put Daniel’s product through the wringer to ensure that it is the real deal.

The hard exterior of an insect such as a grasshopper is just that, however…the outer shell. Inside is a soft, squishy spot that can leave permanent damage. If you are the person being poked under your armor, empathy can become excruciatingly challenging. Instead of putting yourself in the other person’s shoes, the more self-protective route may be to add more armor. That way the hurt doesn’t hurt as much, and no one sees how vulnerable you really are. Several months ago Daniel stomped on me without meaning to. He didn’t realize what he had done until it was too late, and even though he apologized, and has been trying to make it up in every way possible, nothing has been good enough for me. On my pedestal, I have been carrying a boulder of mental pain around in my heart. And I did not share with Daniel how much hurt and resentment I had.

My thinking place.

I uncovered the back story by accident a few days ago. The week actually balanced itself out because when I realized why Daniel did what he did, the boulder in my heart shattered and the empathy rushed in. He had been protecting me the only way he knew how, and he had become a victim of his own actions. People tend to see only what they want to see, and in this case I had wanted to see him as a villain, not a hero. I should have known better. I should have trusted him like he asked me to. I should have been empathetic from the start. Fortunately that afternoon I had to split out some cells for an experiment. Cell culture helps me relax and think. It becomes a meditative process for me since working with cells requires repetitive, precise measurements and movements. They also look beautiful under the microscope.

Empathy is something I need to keep at the forefront of my mind all the time, not just when it is convenient for me. It shouldn’t matter where my place is in a given situation. Sometimes we tend to be hardest on the people we love the most, the people in whom we have placed the most emotional investment. What I need to practice instead of judgment is love, loyalty, and understanding.


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室內花卉

I hope the exit is joyful, and I hope never to return. ~ Frida Kahlo

“I call him ‘Indoor Flower’.” This is what one of my coworkers called her husband, and since she is from China, the Chinese characters in the title of this entry say “indoor flower”, at least according to Google Translate. Our cluster was out for lunch, and my coworker seated across the table from me was talking about how she loved to be outside, in nature, walking through the woods. Her husband, however, preferred to stay inside, thus the nickname. My other coworker seated next to me almost spit his food out laughing as we all dissolved into giggles at the thought of this woman calling her beloved husband “室內花卉”.

I went to this same coworker’s wake this morning, where I gave her husband a hug and told him how very sorry I am about her passing. I have shared lab space with her for the past two years, and she was always smiling, always joyful, finding the good side of everything. On the rare occasions where I saw her frustrated or having a bad day, she shook the off part off and continued on with her life. She was also a brilliant scientist, and her office is full of plaques with her name on it for patents, leadership awards, and technical achievements. Last May she went to the doctor for a lump on her leg that turned out to be skin cancer, and unfortunately it had metastasized too far by the time she started to feel ill. Once she left work last spring on long-term disability, she never came back.

When our cluster found out a few weeks ago that she was being put on hospice, one of my lab neighbors and I set up a time to go through her samples. Her lab was full of tubes, films, and reagents, and we needed to sort what to keep and what to dispose of. We didn’t know if anything was hazardous or what the shelf-life was, and we had her former technician come in to help us out. We set this up for last Wednesday, thinking that we would still have time to contact her if we had questions. Even though she had been put on hospice, which is usually end of life care, we all still hoped that she would recover and return to work. Monday afternoon, however, I received a message in my email inbox that she had passed.

With that news, I spent Wednesday afternoon sorting through a dead woman’s belongings. When her technician arrived, she said that most of the samples in question were garbage, either because they were several months old, they didn’t work, or they could easily be made again if need be. We filled up a waste drum, set a few tubes aside at a coworker’s request, and that was that. As I looked into the waste drum before I sealed it up and took it to our building’s loading dock for disposal, I felt as if I had thrown this woman’s career into the garbage. I had minimized her life as a scientist into a single bucket.

My coworker is not the first one of us who has become ill. I have had two other female friends die from cancer over the past few years, and two who have had tumors removed and are currently living normal lives. Most of my female friends in graduate school miscarried during their first pregnancies. What is unclear is whether these occurrences are work-related regarding exposure to chemicals or too much stress, or whether there is no connection. I had my own tumor removed last October, as well, and the past few months I have spent a lot of my time mulling over what my mortality means to me.

One non-negotiable for me is telling Tim, every day, that I love him. He needs to hear it, and I need to hear myself verbalizing it to him. We hear about how love is a verb, and actions speak louder than words, but in this case I think the words are important. Tim and I don’t have many bad days where we are at odds with each other, and I keep waiting for him to hit the teenage years where he shuts me out of his life. It hasn’t happened yet. The worst I have weathered with Tim is, when I tell him I love him, he makes a joke of it and mumbles back, “Yeah…Iluvvvvyewwwtoooo…”.

I have also been thinking about how I spend my time, and whom I spend it with. Am I being real in my relationships, or am I surrounding myself with people who make me feel good in the moment? Am I being supportive of my friends and family, and letting them know how important they are to me? Am I doing everything I want to do, and seeing everything I want to see? Right now I am working on finding a balance between nurturing new friendships while maintaining the well-established ones. The bottom line is to live life to its fullest, the best way I know how, and to make sure Tim is along for the ride as much as possible.


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Simplicity

Less is more. — Mies van der Rohe

Simplicity at its yummiest.

We made Stoved Chicken, one of our favorite meals, for supper this weekend. This is a Scottish recipe that dates back to the seventeenth century and is cooked in a closed pot. The result is a most delicious dish that turns out every time. Here are the directions:

Ingredients:

  • 2 oz. butter
  • 1 chicken, cut up
  • 2 red onions
  • Several potatoes
  • Salt, pepper, thyme, and parsley

Melt the butter in a skillet. Brown the chicken on both sides, about 5 minutes. Peel several potatoes and slice them thinly. Put the potato slices in a single layer on the buttered bottom of an ovenproof casserole dish. Peel and slice one of the onions and place a layer of onions on top of the potatoes. Season with salt and pepper, and sprinkle on some thyme and parsley. Place the browned chicken pieces on top. Peel and slice the second onion, and place the onion slices on top of the chicken. Add more potato slices on top to cover the onions. Season this layer as well with salt, pepper, thyme, and parsley. Place a layer of aluminum foil over the casserole, and place a heavy baking sheet on top of that. Cook for 2 ½ hours at 275ºF, removing the baking sheet and foil for the last half hour of cooking to brown the potatoes.

I cooked this in a clay pot, but we have also done it using the foil and baking sheet method. The result is a succulent roast dinner with minimal prep time and virtually no clean-up. As Daniel and I were eating, I mentioned to him that I love cooking recipes that are hundreds of years old. As I cook, I love thinking about how another woman was doing this under much different circumstances, in a different part of the world, but with the same purpose: to nourish her loved ones.

What intrigues me about Stoved Chicken is that it was invented, in my opinion, by a genius. Whomever was the inventor had few resources to work with: a chicken, potatoes, onions, and herbs a.k.a. glorified weeds that smell good and don’t make you sick growing in the yard. This person also had no clean dishes and no time to prepare a seven-course meal. This is fix-it-and-forget-it at its best. This person was working with what was available. The genius part is that it tastes amazing.

I need to be more patient with autism research. I want solutions NOW, and I easily forget that we are at the beginning of a very long road with limited resources. The educators, doctors, and psychologists who interact with my son Tim are working with what they have available. They are doing everything in their power to make sure he is learning what he needs to learn in school, and adjusting as well as he can to living in the world around him. We have to start somewhere, and right now all we have are the basics, and even those are rudimentary.

The advantage we have today lies in the technological tools available to do research faster and better with more accurate results. It may be the same recipe, the same procedure, such as isolating DNA or looking for the presence of a particular protein, but instead of taking a week in lab the experiment takes a day. I purchased my chicken and vegetables at the grocery. The Scottish woman who made the same recipe four hundred years ago started with a surly chicken pecking around in her back yard and onions and potatoes buried in the dirt.

The hard part, the genius part, of scientific research comes in knowing what technique to use and when, and to keep the experiments as simple as possible. When I started graduate school in cancer biology, my advisor told me that in his lab we don’t do hard techniques. Everything is simple. The complicated part comes in knowing how to stitch those techniques together to tell a story. To make progress. To let a result lead you to the next experiment. And to begin knowing, instinctively, the direction in which you need to head.

Life comes one small step at a time.