PSA: Folate Receptor Alpha Autoimmunity

Do you or your child have an autism spectrum disorder?  Do the symptoms include a language delay or other language disorder?  Have you done genetic and other medical testing, but have not yet found a cause for the autism?

If you answered yes to all of these questions, you may want to consider testing for Folate Receptor Alpha Autoantibodies (FRAAs).  Links with info about this test are at the bottom of this post.  Emerging research indicates that FRAAs can cause autism spectrum disorders with language impairments.  FRAA testing is potentially important because for people who test positive, there is a treatment that can improve or even eliminate autism symptoms.  The best part is the treatment is just high doses of folinic acid, a B-vitamin similar to folic acid (but there is a difference, and it matters!).  Folinic acid has an excellent safety profile, and is available in lower doses over the counter, and in higher doses as a prescription called Leucovorin.

So what are FRAAs?  Your immune system is constantly producing antibodies to fight off foreign invaders like bacteria and viruses.  Antibodies are why when you get a cold, it doesn’t last forever and eventually you get better.  However the system is not perfect, and sometimes (for unknown reasons) the immune system produces antibodies that attack parts of your own body, creating problems.  These are called autoantibodies.  Autoantibodies sometimes show up in healthy people, but high amounts of certain autoantibodies can cause diseases collectively known as autoimmune diseases.  These diseases span a wide range of problems, but they share a common cause: your immune system fighting a healthy part of your own body.  For example, I have autoimmune hives.  This means my body produces autoantibodies that attack my own skin, causing itchy rashes that look like an allergic reaction (but the allergen is my own skin).  Rheumatoid arthritis and Lupus are other examples of autoimmune diseases.

Emerging research in the last decade indicates that for some individuals with ASD, there is an underlying autoimmune cause.  Specifically, FRAAs are autoantibodies that attack Folate Receptor Alpha, and they come in two flavors called blocking and binding.  Folate Receptor Alpha’s job is to transport folate across the blood-brain barrier and into the brain.  Folate is critical for brain development, and folate starved brains can show autistic symptoms and delayed language development.  Too little folate in the brain is called Cerebral Folate Deficiency (CFD), the symptoms of which overlap with ASD.  In children with ASD, language delay, and no identified genetic cause, around 60-75% test positive for FRAAs.  20-30% of their parents will also test positive.  In one study, control children who had developmental delays but not ASD tested positive only 3% of the time.  The good news is, a different form of folate called folinic acid can get around this problem.  Folinic acid does not require Folate Receptor Alpha to cross into the brain, instead it can be carried by something else called the Reduced Folate Carrier (RFC).  This path isn’t as efficient, but high doses of folinic acid have been shown to increase folate levels in the brains of people with FRAAs.  In a recent randomized, double-blind, placebo controlled clinical trial (gold standard in medicine) significant improvements were seen with high dosage folinic acid in children with ASD and FRAAs in the areas of reduced stereotypical behavior, increased attention, and increased receptive, expressive, and non-verbal communication abilities compared to controls who received placebo treatment.  This result is considered preliminary though, because the trial included less than 50 children.

There is a blood test for FRAAs.  However, it is currently not approved by the FDA for clinical use, and is considered research use only.  That said, you can order the test for yourself or your child.  It is not covered by insurance, and costs $200.  It takes around 4-6 weeks to get results.   Leucovorin (high dose folinic acid) is also not (yet) approved to treat ASD.  The usual use for Leucovorin is for chemotherapy patients, because it reduces the negative effects of the chemotherapy drugs.  Don’t let that scare you though, Leucovorin is still just folinic acid, a B-vitamin.  Excess folinic acid is processed by the kidneys and excreted in the urine, so it should be very safe as long as the individual has healthy kidneys.  However, the long term safety of Leucovorin for ASD treatment has not yet been studied.  The Leucovorin dosage used in the clinical trials to treat children with ASD is 2mg/kg body weight, up to a max of 50 mg, for 12 weeks.  Children started at half that dose for the first two weeks, and doses were divided in two (1/2 given in the morning, 1/2 in the evening).  The results after 12 weeks are very promising, but full effects take 1-3 years.  Treatment may need to be lifelong.

Folate levels are usually tested with blood tests, which will not detect this problem because the issue is not the folate level in the blood, but rather the inability of that folate to get to the brain.  The only way to truly know the folate level in the brain is to do an invasive spinal tap.  So if your doctor says you don’t need FRAA testing because your blood shows adequate folate levels, your doctor is wrong (this happened to me).  Studies indicate though that patients can skip the spinal tap, and if blood tests are positive for FRAAs, it is probably safe to assume the spinal tap would show low folate levels and proceed to treatment.

If you have read this far, you have probably guessed by now that I had my daughter tested for FRAAs.  She is positive for the blocking type, at high levels.  We began Leucovorin treatment this week.  This is the end result of months of fighting for this, including switching doctors to find someone willing to order the test and prescribe the treatment.  The Leucovorin is now being compounded every two weeks, special for her, by the hospital pharmacy.  I am now going to test myself as well, because lower levels of FRAAs can cause other symptoms including anxiety, pregnancy complications, and preterm birth (kiddo was preterm).  I wrote this explanatory PSA post after reading almost a dozen medical papers on this topic and personally reviewing the evidence.  I found it so compelling that I fought hard to make this happen for my daughter.  Now I’m hoping I can spread this info and help other people as well.  Like most ASD treatments, Leucovorin treatment is more effective the younger the patient is when they start it, so don’t delay!

Below are links with more info for anyone who wants to pursue this testing and treatment for themselves or their child:

Interview with doctor leading this research that explains it well: http://www.nofone.org/dr-frye-q-and-a-folinic

Information on the FRAT test to detect FRAAs: http://iliadneuro.com/Information-on-Frat.html

Clinical trial reports: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3578948/

http://www.nature.com/mp/journal/vaop/ncurrent/abs/mp2016168a.html

 

 

 

 

 

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Career unhappiness

I’ve been reading a lot of “Quit Lit” recently and I am seriously contemplating quitting my own academic job.  This (hopefully still) anonymous blog is the only place I have written this down, or even admitted it beyond my immediate family members.

One piece of academic “quit lit” included this PhD comics cartoon:

phd082803s

My life so far looks an awful lot like that top “Life plan”.  I met my husband in college, and we got married 1 year after I started grad school, when I was 22.  I finished my PhD at age 27, and had my first child at that same age (the only thing significantly off the timeline, it that I did it earlier).  I started my “academic dream job” (tenure track, R1 university) at age 29, and also bought a house at that time.  I haven’t published any books but I do have a few high-impact papers under my belt, and I could plausibly win a prestigious career award in my mid-to-late 30s.  Im well on my way to tenure, I have graduate students, and I’ve been fairly successful with grants and funding.  So why do I think about quitting nearly every day?

The reasons are many and varied, and it’s hard to point to just one thing.  I guess the best summation is a combination of exhaustion and loss of passion for my research and teaching.  When I sit down at my desk, I am not eager to begin working.  It’s hard to remember when I was last really interested in a research problem.  I think I’ve just been faking it for a number of years, at least since the end of my Ph.D.  I teach because I have to, not because I want to.  I am nervous in front of a classroom (though I hide it well – too well, because people don’t believe me when I say I am nervous) and I struggle with anxiety about all things large and small.  I worry constantly that students are judging my appearance and competence, and I am mortified when I make mistakes in front of the class (as I inevitably occasionally do).

The pressure of the job is high.  I am not publishing enough papers, and I feel constant pressure to publish more.  But I hate everything about the publishing processes.  I recently had a paper rejected, a paper that it took me over a year to write because I hated the work and could hardly bare to look at it.  It was rejected with an invitation to resubmit – essentially, I was told to start over on something I barely finished because I hated it so much.  I have another project that is ready to be written up – a task I hate doing – but I don’t have the time to do it even if I wanted to.  That’s because first I need to find and fix an issue with some code my graduate student needs to use, something I’ve already spent weeks trying to do and getting nowhere.  I also need to read and review over 20 proposals because I agreed to serve on a proposal review panel for a government agency, something that every other professor tells me I “should” do.  This fall, I’m scheduled to teach two very difficult courses simultaneously, while keeping up with research, publishing, and advising.  It’s just gotten to a point where the pressure and stress levels are quite high, the to-do list very long and never ending, and I no longer really enjoy any of it.  The exception is advising, which I actually do enjoy, but less and less with time.  I’m starting to feel like my advising might actually be harming students, because I am of course leading them down the same path I have followed that has made me so unhappy.

I still believe in the power of science to help society in a general sense.  I even still believe in the usefulness of my own research, and I love talking about the topic because it is pretty cool stuff.  But science is incremental, and I know that my entire branch of research (which is rather new) may turn out to be mostly useless.  It also might turn out to be a huge breakthrough, but scientists in my field are unlikely to know which is true for decades.  This is not a criticism of my field, or of science, because the reality is that promising research avenues often turn out to be duds, and it’s often impossible to know that without decades of research.  To stick with something that might be a bust, and is really really difficult to do, for decades requires a fierce love that I fear I just don’t have.

For now I am staying for a few reasons.  Yes, I am unhappy, but I know nothing else.  Will I be happier outside of academia?  Will I even find a job?  I have no idea.  My family relies in my income, and for now, my job is secure.  If I leave, I’ll be letting down a lot of people.  My colleagues will be rather upset, because in the current university climate, they know they will not be approved to do another search, so the faculty line will die with me (this is academic lingo which essentially means if I quit they won’t be allowed to replace me, and will have to get along with one less faculty member).  The person I feel the worst about letting down is my Ph.D. advisor.  I see him as a 3rd parent of sorts (he is about the age of my parents) and I know he’s proud and happy that I became a professor, which is what he wanted for me.  A handful of other students of his have also gone on to become professors, but I was the first in over a decade and still the most recent.

In 2 weeks, I’m traveling to serve on this proposal review panel.  The location happens to be just a few miles from where I did my Ph.D., and I plan to visit with my old advisor.  I will likely discuss my career issues with him at that time.  I hope that gives me more clarity.  For now I feel stressed out, confused, scared, and most of all, increasingly unhappy where I am.

How did I end up here?

I am a young female science professor in a tenure track job at a major research university.  That in itself is both a major accomplishment, and a very rare thing.  I look my age, or maybe a bit younger, and people who don’t know me usually assume I am a student.  New students who enter my office usually cannot hide their surprise upon meeting me, and some people have even asked me where the professor is.  When I first moved into the office, the department asked someone to come clean it after the recently retired prof who used to have the office moved out.  I happened to be there when the cleaning person came by, and she helpfully informed me that “a new professor is moving in” clearly thinking I could not possibly be that person despite being in that office.

Moving around the wider world, I don’t often mention my profession, but it sometimes happens that I meet a new person or strike up a conversation with a stranger, and my profession comes up.  People react with surprise, every time.  Sometimes, with extreme surprise and disbelief, even thinking I am joking.  I am now purposefully vague unless asked specifically about what I do.

All I did was follow what seemed to be the most obvious path at just about every decision point in my life.  I was smart and did well in high school, so I went to college and majored in my favorite subject (a science).  I did well there and liked it, so I went on to grad school.  I did well there and still enjoyed it, so I went off to an academic postdoc, then a faculty job.  I never skipped any grades, spent 4 years in college, 5.5 years getting my Ph.D., and 2 years as a postdoc.  Not so weird for someone who always wanted to be a scientist.

And yet, it’s very lonely where I am now.  My colleagues in my department, while nice people, are almost all men much older than I am.  There is only one other woman besides me in the department, and we are decades apart in age.  The professor closest to me in age in 8 years my senior, and while friendly, we aren’t particularly close.  How did I become such an anomaly, when all I did was follow what seemed like a straight-forward path?

Happy News of the Day

I almost cried on my way to work today because of a story I heard on the radio.  Not about something terrible going on in the world, although there’s plenty of that. No, the story that brought tears to my eyes was about Sesame Street.  Yes, that Sesame Street.

Sesame Street has added a new muppet to the permanent cast, something that doesn’t happen all that often.  The new character is a girl muppet with autism named Julia, who is portrayed as about 4 years old.  She has many of the same characteristics my daughter has, including hand-flapping, echolalia, and other characters have some difficulty getting her attention (for example, they say her name multiple times).  And they made her a GIRL! Most people with autism are male, and while they might not be as happy as I am about this, the idea of having a girl character with autism is just great for my daughter.

More important than the fact that my daughter will now have a muppet on sesame street just like her is the fact that the other kids in her class will see it too.  The show is going to model how to treat children with autism using the new muppet, modeling inclusion and acceptance of typical autism differences.  So I hope this will encourage other children not to make fun of my daughter and children like her, and demystify autism a bit for everyone.

New episodes of Sesame Street featuring Julia will be out in April, and of course my daughter will watch them.  For more info, see the print version of the radio story I heard here: http://www.npr.org/2017/03/20/520577117/julia-a-muppet-with-autism-joins-the-cast-of-sesame-street.

Terrible policies

This week has for me been a week of frustration with policies that clearly don’t make any sense, and that make my situation even more difficult than it already is.

First, I’ve been periodically getting in touch with the university parking office since I started my job to ask for parking reassignment.  I have been assigned a spot in a parking garage that is about a 7 minute walk from my office.  Like most university garages, it seems to have been competing for a “most inefficient” design award, and it can easily take 10 minutes or more to wind up or down the darn thing.  And, the location of the garage adds about 5 blocks of congested downtown driving to my commute each way.

About half of the faculty and staff in my department have permits for the lot just outside our building, which I will call the good parking lot.  The university charges less for these permits than for my garage permit.  This week I complained a bit more loudly to the parking office, including pointing out that because I have a toddler with autism, I sometimes have to leave midday for appointments or urgent issues.  This time I was escalated to the head of university parking – who told me there is nothing they can do.  University policy assigns good parking lot permits based on seniority, and once assigned, they are never revoked.  If a faculty member retires, they can choose to keep their permit – at a retiree price of $24 per year, or essentially free.  We have two retirees in our department who sit on these permits and only use them very rarely – but with pricing like that, why give it up?  I’m 8th in seniority order for a permit currently, in a lot with something like 10 spots.  So I’ll be stuck paying a lot more to park in a ridiculously inconvenient garage while the retired professors get to park right next to the building on the rare occasions they chose to grace us with their presence.  What a wonderful university policy that is.

Second, Husband and I have been preparing for a while for our daughter to turn the big Three-Oh (3.0, that is) because she ages out of the state early intervention program and ages into the public school early childhood program.  The transition is going to bring a lot of changes and stress for all involved.  This week I learned that, like all public schools, the early childhood program that serves toddlers with disabilities is out of session during the summer.  And their summer, for some reason, begins May 8.  So she’ll start this program, be in it for 1.5 months, and then for 3.5 months she’ll get nothing.  No supports, no services, nada, and we’re on our own to arrange care for her.  What preschool wants to take an autistic toddler just for the summer?!  The early intervention program for children under 3 is year-round for obvious reasons, so I was genuinely surprised to learn that the public school program isn’t.  Does my child somehow magically not need autism services over the summer?!  It just doesn’t make sense to me.

 

Liberal elitism and fear of being different

I haven’t written here in a while, not since the 2016 US Presidential election. I was originally a Bernie supporter and then later a Hillary supporter, and I, like many others, felt immense fear at the election of Donald Trump. On election night I sat in bed shaking uncontrollably as it became clear Trump would win. I was terrified but less surprised than most because I had been following FiveThirtyEight’s election coverage for weeks, and they gave Trump roughly a 30% chance of winning.

Trump’s presidency makes me afraid for many, many reasons, not least of which is the fact that he’ll undo the precarious progress made in addressing climate change – progress that was already too little too late. I also fear his clearly bigoted, sexist, Islamophobic, homophobic rhetoric. But the reason I want to write about here is my autistic daughter. Remember when Trump mocked (or did a bad impression of, if you are a Trump supporter) New York Times reporter Serge F. Kovaleski? Mr. Kovaleski has a physical disability that does not affect his brain. Imagine how Mr. Trump or one of his loyal supporters might treat someone with Autism then. I fear that in this new world, people will feel more prejudiced towards those with autism and similar disabilities, as well as more comfortable saying and doing rude things to them, because we no longer need to be “politically correct” or worry about the hurting the “special snowflakes.”

I truly believe my daughter has a lot to contribute to this world. She is delayed in language, and certainly has issues with communication and social interaction. She has sensory meltdowns. But she is also brilliant and is already, at age 2.5, surprising adults with her intelligence and her ability to put ideas together in novel ways. I can’t wait to see what she can do as an adult, because I expect her to be a very out-of-the-box thinker, and people like her have the potential to create big change. But only if society will accept them, only if people will listen instead of dismiss her and make fun of her differences. I’m not asking people to give her lots of special treatment, only to consider my daughter and people like her worthy of being listened to, not made fun of, and yes, treated a bit differently (as much as is required to be polite – for example, not making snide comments about strange sensory behavior in public). It’s not a big request, or at least it wasn’t, but it’s starting to feel less and less likely in a Trump world. I am afraid for her because she is different and being different is now, more than ever, very scary.

I’m also afraid for myself because I am one of the “liberal elites” who is “out of touch” in my “ivory tower.” So I want to use this space to explain that point of view a little bit. I am a scientist and a professor at a flagship state university in the midwest. I spend about half of my time doing scientific research, including training and mentoring the next generation of scientists. I spend the other half of my time teaching, including teaching undergraduate courses and doing public outreach such as radio and magazine interviews, and public lectures and demos at science museums. The research I do is aimed at better understanding certain natural hazards, mainly earthquakes. The end goal, if my career is a successful one, is to make advances in understanding earthquake physics that directly inform earthquake hazard forecasts. These forecasts tell engineers and emergency planners how much shaking to plan for in the event of an earthquake and whether or not to plan for the possibility of a large tsunami. Though I will never (I think) be on the ground pulling survivors from the ruble after a large quake, I nevertheless hope and expect my work to contribute to saving thousands or even millions of lives. But scientific progress is often slow and incremental, and only occasionally flashy enough to make the news. So while it might seem like I, and people like me, are disconnected from the concerns of “regular” people, the reality is I’m working very hard on a project that takes a lot of smart people working hard for a very long time, but our end goal is and always has been saving lives.

I think most “ivory tower” academics could similarly argue that their work is aimed at either saving or improving lives. Even theoretical physicists, because advances in theoretical physics eventually lead, down the line, to life changing inventions (for example, the microwave oven). I hate when people ask theoretical physicists what the practical applications of their work are, because we couldn’t possibly know the practical applications of physics we haven’t even discovered yet. But the biggest, best advances come discovering new physics, even though no one could have told you what they would be ahead of time. Even people in the humanities are largely concerned with saving or improving human lives (I don’t want to spend tons of space here giving examples, and others are more qualified than I am to give humanities examples, but I am confident you can find them if you look). Climate scientists are another great example – they are literally trying to give us the information we need to save the environment, our cities, and many human lives but many in power refuse to listen and many scientists are personally attacked and threatened for it.

As academics, our jobs are very stressful. At best, we get our first permanent jobs around age 30 (referring to a tenure track assistant professorship, optimistic scenario) with the option to fire us unless we hit very difficult targets in 5-7 years. These jobs don’t pay a super high wage, either. In fact academics at the very best universities, many of whom are visionaries in their fields, can’t afford to own homes within communting distance (this is true for Harvard, MIT, Stanford, Oxford, and CalTech to name a few). For state universities like mine, our salaries are public information. I challenge anyone who thinks professors are very highly paid to take a look. We’re (almost) all PhDs, and in private industry, most PhDs are hired with six figure salaries. At my university, new assistant professors are hired in the $50-75k range, and only more senior professors (age 55+ usually) make over $100k. Certainly most of us do OK to well money-wise, but we’re not exactly swimming in wealth and we worked really hard to get where we are. These salaries may seem pretty high to someone in the working class, and I’m not trying to complain that I am paid too little (I’m fine with what I am paid). Rather, I am trying to challenge the notion that academics are among the super elite in terms of income. Most of us are solidly middle to upper-middle class. And that’s only counting those of us who actually got tenure-track or tenured jobs. Many, many more never landed those dream jobs and spend years or even decades serving as very poorly paid adjuncts with no job security whatsoever. (To be fair, these numbers assume no “summer salary”, meaning these numbers are 9 month salaries. Professors can obtain research grants and pay themselves for the summer months, but usually are only paid for 1 or 2 of them. And it’s a myth that we don’t have university work to do over the summer, we all do things like prepare our course materials, advise students, and serve on committees, we’re just not paid to do it. Many, if not most, new professors go without any summer support for the first few years.) For more info on salaries at a variety of universities, see https://data.chronicle.com/.

We’re all intelligent people, and with some exceptions, we’re well-meaning people. We chose to devote our lives to academic study and teaching not because it’s easy, and certainly not because we get paid a ton of money, but because we thought it was important. We do it because we believe we are making significant contributions to society, and because we enjoy the work (largely due to the feeling of making important contributions). So when people dismiss us as “out of touch” and “liberal elites” who don’t care about the “regular people” it’s very disheartening.

When people complain about jobs opportunities shrinking, pay going down, etc., I know those are real concerns that Mr. Trump tapped into with his campaign. I know these problems are real in part because we have them in academia too. Getting a tenure-track job now is more difficult than ever, and in real dollars (adjusted for inflation and local cost of living) academic salaries in many places have gone down. The competition for jobs is so tough that people with truly exceptional qualifications (e.g PhD from Harvard, published 10+ original scientific papers, some highly cited by others) have a hard time landing one of these $60k/year gigs. Many of the academic jobs are increasingly going to immigrants, too, many of whom come to the U.S. on student visas as undergraduate or graduate students. (For the record I am in no way anti-immigration, nor do I have any problem with foreigners getting academic jobs in the U.S., because I think we should hire the best regardless of origin, I am just trying to draw the parallel between the situation in academics and the situation of working class whites). So no, we’re not as out of touch as many people think. Rather, we experience the same issues of increased competition and decreased job opportunities. We’re all in this together, and people really need to stop seeing professors as out of touch liberal elites, because we’re anything but.

Scientific Travel

This week I’ve been attending a scientific meeting.  It’s been a very good meeting both in terms of the things shown and discussed, and in terms of the networking opportunities and collaborative conversations I have had.  But it’s brought to the forefront of my mind the issue of travel when I have an autistic toddler.

I try to reduce how many meetings I go to every year, because it’s always hard on my daughter and husband.  This year, it’ll end up being 3 meetings, all of which will be 1 week or less.  At least in my field, this is fairly low.  An informal survey of colleagues gave numbers in the range of 3-6 trips/year, with some of those being multi-week long workshops or scientific expeditions.

Meeting travel is fundamental to my job in a few ways.  It’s key to keeping up with the current research, to getting my own research out there, and to building and maintaining collaborative relationships.  Reputation really matters in science, especially as I contemplate going up for tenure in a few years.  And reputation is largely built at meetings.  Meetings are also the place where I get to concentrate on just science for a few intense days.  95% or more of my original scientific ideas come to me during meetings as I absorb other people’s results and have in-depth scientific conversations.  I always come home re-invigorated and excited to do new research.

On the personal front though, it’s difficult.  People sometimes to say to me “just bring your husband and daughter along with you!”  Some people do this, and in fact, we did try it once.  But as anyone with a kid knows, travel with your kid is hard.  Travel with an autistic kid is really really hard.  She can’t sleep in strange spaces.  She melts down in loud, crowded environments.  She stops eating pretty much entirely when she travels.  It’s bad enough that we’ve contemplated refusing to travel with her at all, even to visit relatives.  So bringing the kiddo is not an option.  At home, she and daddy get along OK without me for a few days.  But of course it’s much harder on daddy doing it all by himself.  And for the first day or two, there are usually more meltdowns and more defiance as she realizes mommy isn’t around.

So there is a clear personal-professional tension that comes up every time there’s a meeting in my field.  Like all things, it’s about priorities and balance.  I do wonder if meeting travel will get easier (ha) or harder (probably) as my kiddo gets older.  If any readers out there have any advice or personal experiences balancing these issues, I would love to hear it.

Letting the diagnosis sink in

Even though my daughter was diagnosed with autism almost 8 months ago, I find that I am still processing the news.  Despite creating this blog, and despite the post I wrote for Break the Parenting Mold in which I complained about others trying to convince me my daughter doesn’t have autism, I sometimes doubt the diagnosis myself.  Sometimes I think maybe she really isn’t autistic, that she’s just a late bloomer, and it’s all a mistake.  Or that she’ll be one of those kids with “optimal outcomes” who lose the autism diagnosis.   After all, she has made huge strides since beginning intensive ABA, and her therapists say she is the fastest learner they have ever seen.  I’ve had doctors comment that she is “clearly very intelligent.”

But inevitably, just as I’m thinking that maybe my child doesn’t have autism but is really just a smart late bloomer, something reminds me that she is in fact autistic.  She might start rocking back and forth or flapping her hands in excitement, or refuse to respond to her name, or refuse to get out of the car in the driveway when we usually do that in the garage, or insist her milk is served correctly or there will be a major meltdown.  (It’s often unclear to me what’s incorrect about the milk being served, leading to a frustrated, super mad toddler screaming at me and throwing the milk, and a confused mommy knowing that she in fact really does want it, and trying different ways of serving it until one works.  Most recently, the thing that worked was putting the milk in the lowest part of the fridge door and leaving the fridge open so she could get it.)

So my daughter has autism, and probably always will.  Therapy has certainly been a huge help, but her stimming behaviors are still prominent, she still has problems with social interaction, she still melts down when routines are changed.

I think a lot of the difficulty in processing the diagnosis is confusion over what it really means to begin with.  I’ve read the DSM-V definition, and my daughter certainly fits.  But what really is autism, other than just some checklist?  Autism is different for everyone so generalized descriptions are hard.  Because of that it’s easy to wonder if there really even is a definition, if it’s even really a “thing.”  It’s difficult to wrap my mind around what this diagnosis actually means in terms of what my child experiences, how to best parent her, and what her long-term outlook looks like.  The parenting one is especially hard, because we are first time parents and there’s no book for autistic parenting.  Or rather, there are plenty of books, but as every case of autism is different, they aren’t necessarily applicable to us.  I wonder if my guesses about what the best parenting methods are might make the difference between a child prodigy and someone who needs round the clock care as an adult.  I am at once grateful to live in a time when autism is recognized and some effective treatments are available, but also disappointed that there isn’t more progress in explaining autism, wider variety of treatments available, and more knowledge about how to tailor treatments to specific children.

I suspect I’ll still be processing the diagnosis and figuring out what autism really means for my family for a while to come.

Maternity Leave

As I mentioned in a previous post, my husband and I are thinking of having a second child.  It’s been coming up in conversation between us more and more lately, and we’ve both caught ourselves aww-ing over stranger’s babies a lot.  We even have an extra bedroom in our home that we refer to as the nursery or the “baby’s room” in anticipation of baby #2.  For various personal and professional reasons we aren’t planning to get pregnant until early 2017, but clearly we are thinking about it a lot.

On Friday I was discussing this a bit with a colleague and friend, who is also currently the only other female professor in my department.  I realized that since she doesn’t have kids, there was a good chance this department has never had a faculty member be pregnant and take maternity leave.  There have been other female faculty members in the past, but none was here more than a few years.  So I asked and yup, if I become pregnant it will be a department first.  There have been female grad students who had babies, but not faculty.

I don’t expect any issues surrounding this however.  The university has a good maternity leave policy for faculty, and our current department head is very supportive of work-family balance issues.  I am entitled to 12 weeks paid leave, and knowing my colleagues I don’t think anyone would really complain about it.  But it’s strange to think I would be something of a trailblazer just for having a baby.  Newsflash to science departments: young women can be science professors AND have babies too.

I already went through this with my first baby. I was a postdoc, one of very few women in that department.  They had never had a pregnant postdoc before.  I had a prestigious postdoctoral fellowship paid from an endowed fund.  I caused some headaches for the department and many meetings of committee that was in charge of the fund, which included the department head, just to discuss how to handle my case.  It apparently had never occurred to anyone that a postdoc brought in under this fund might become, gasppregnant!  In the end they decided to give me up to 4 months unpaid leave, since by university policy they had to.  Then they suggested I use my short-term disability insurance in order to get 55% pay for 6 weeks, and suggested I could take my 4 weeks of combined vacation and sick leave (paid at 100%) as well.  So no real maternity leave, but it was something anyway.  Luckily my postdoc advisor was also very understanding and supportive, and really didn’t mind if I needed to take a little bit of extra time off here and there.

All-in-all, my experiences haven’t been that bad.  Certainly it could have been much worse and likely is for many academic women.  But it’s just a bit mind-boggling that just having children causes me to set a bunch of new precedents within my departments.  Being a trailblazer in this area was never my intention, but if I’m the first, so be it.  Hopefully my forcing these departments to deal with this issue will help others who come along after me.

 

Probabilities

This post is going to be more philosophical.  I’ve been thinking a lot lately about probabilities and how it seems like a lot of events with a probability of roughly 1-3% keep happening.  For example, my daughter was born early due to PPROM (preterm premature rupture of membranes; my water broke at 33.5 weeks).  I had no risk factors or warning signs for this, making my risk for sudden PPROM roughly 2%.

My daughter has autism.  We have absolutely no family history of autism, and she is a girl (autism is much more common in boys).  The probability that she would have autism given this profile is roughly 1%.

A few other things I don’t want to write about have also happened recently with similar nominal odds attached to them.  It’s made me think that it isn’t so crazy to worry about things that have a 1% chance of occurring, since in my experience plenty of them occur.  A 99% chance no longer seems like a sure thing.

I realized though that we all take many, many 1% or less gambles every day and usually we win, meaning usually we are in the 99% (about, say, 99% of the time!).  Once I started thinking about all the thing that could have happened but didn’t, I realized that maybe it’s not that strange that I “lost” two 1-3% chances.  After all, there is probably at least a 1% chance that I would get in a car accident sometime in the last year.  Didn’t happen.  Many other pregnancy complications that didn’t happen to me had 1% or higher chances of occurring.  There’s probably a roughly 1-3% chance that my husband or I would have developed cancer by this time in our lives, and that hasn’t happened.

For every real-life gamble lost, every disaster or bad diagnosis, there are many more gambles won and disasters averted.  When something bad happens, it’s easy to ask “why me?” but maybe it’s better to remember the things that didn’t happen instead.  For every 100 1% chances you take, you should expect to lose one.  Most of the 1% chances we take we don’t even realize we’re taking, so it always seems like a shock when that 1% thing happens to us.  But we all have to lose sometime.  Really, these things should come as a shock, because if we spent all our time anticipating all the 1% gambles we could lose we’d all go crazy.  I guess we just have to expect the occasional shock in life.

When I look at things this way, having PPROM and a chid with high-functioning autism seems pretty good, compared to all the other disasters that could have happened.