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?

Why scientists have to work for free

Scientists are one of the only highly respected professions which society expects to work for free.  Not completely for free, of course, but any research scientist can tell you all about the work they do for no pay at all.

Take me for example.  I have a full-time, 9-month tenure track appointment at a research university.  This is pretty much the best case scenario for a 30-year-old scientist such as myself.  The 9-month part means that my university pays me a full time salary 9 months out of every year (the academic year).  I am not paid for the summer months.  This does not, however, mean I can just not work during the summer.  In order to get tenure, I need to obtain grants and publish papers.  The summer, during which I am not teaching, is my main block of time during which I can conduct research, develop grant proposals, and write and publish scientific papers.  If I was to not work over the summer, there is no way I would be able to earn tenure.  If I don’t earn tenure within 5 years, then I’m fired.

I can earn pay for some of the summer months, by obtaining research grants that include some summer salary.  But grant proposals are the most egregious example of how scientists are expected to work for free.  To put together a good grant proposal, with a reasonable chance of success, can take 2-4 weeks of full time work.  It usually takes much longer because I can’t dedicate 2-4 weeks to just writing a grant proposal.  A successful grant proposal requires a well thought out, well researched, novel and interesting idea.  It also generally requires some “preliminary results” to prove that the idea works.  So I have to do a large part of the science I’m proposing to do just to try to obtain the money to do it.  And grant proposals have a success rate of roughly 25%, so 75% of the time all that free work I did amounts to nothing.  Even if I do get that grant, a typical NSF grant pays for 1 month of summer pay for each of 3 summers, after which it ends.  So that means scientists are constantly writing grant proposals, usually 2-4 per year.

I know of many scientists who do not have the benefit of 9-month appointments like I do.  Some researchers are responsible for obtaining anywhere from 50-100% of their pay from grants.  That’s right, some scientists are hired into “jobs” that come with no pay whatsoever, and they then have to constantly apply for money to pay themselves.  These are called “soft money” positions.

I understand the importance of the grant proposal system.  It is a mechanism to direct limited public science funding to the projects deemed most promising by panels of experts, and it prevents scientists from becoming lazy and no longer pursuing new and promising ideas.  But we would be incentivized to participate in the grant proposal system even if we were paid year-round.  That’s because grants are also used to pay graduate student researchers, to purchase equipment, to pay for scientific conference travel, and to pay for publication fees and other research expenditures, in addition to being required for promotion and tenure.

Another example of how scientists are expected to work for free is peer review.  Every scientific paper and proposal goes through peer review, meaning it is critically read and evaluated by 2-5 other scientists.  Those peer reviewers typically spend anywhere from 2-8 hours reviewing a paper or proposal, completely for free.  In fact, in the case of a paper, the author pays the journal fees in the range of $2,000-$5,000, not one penny of which goes to the peer reviewers for their work.  And we can’t even take credit for peer review, because it’s meant to be anonymous and confidential.  So this is work we’re expected to do for free, out of professional ethical obligation, for no pay or recognition whatsoever.  If one refuses to participate in peer review, that person obtains a strongly negative reputation with journal editors and grant program managers, which can be professionally very damaging.

There is a saying in research science that no one chose this career for the pay.  And it’s true, the vast majority of researchers could make more money by applying their skills in a more lucrative industry.  Our salaries aren’t enormous, especially considering the number of years of education it requires to become a research scientist.  We’re here because we believe our work is important and valuable to society.  And I believe our time and work should be valued enough that we are paid for it.  For all of it, not just during the academic year.

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.

Dear Autism Intervention Providers: Women work now

As I’ve mentioned before, the big Three-Oh (3.0 years old, that is) is approaching quickly for my kiddo with autism.  She’s aging out of the state early intervention program.  We recently discovered something about every program for 3-5 year olds with autism in our area: they are designed for stay-at-home parents.  Has the autism community not gotten the memo that women have joined the workforce now?  Working parents need quality all day care for their children, autistic or not.  We’d be happy to pay a bit more for such a program if that were an option.  I’d love comments from anyone about whether things are similar where they live for care for children with autism in the 3-5 age bracket.  I really wonder whether this is because I live in a mid-size Midwestern town, and if things would be better in a major urban area by one of the coasts.

We thought we had a plan for the age 3 transition, but this week, we’ve realized our plan is untenable.  The original plan was: she’s eligible for early childhood special ed, essentially a part-time preschool run by the school district for special needs kids to get therapies and interventions.  This is typically 8:30-11:30 AM, Monday – Thursday (although not always, and we won’t know her specific placement for a few more days, about 2 weeks before her birthday).  This preschool program is run out a building on the far edge of town, nowhere near either of our commutes.  There is also a program run by the local Easter Seals chapter that does ABA with kids with autism, that is 12:30-3:30 PM, 5 days/week.  As you have probably already noticed, this means 1) someone needs to pick her up at 11:30, feed her lunch, and drive her to another location by 12:30.  Also, 2) someone needs to get her at 3:30 and care for her until her parents get home, and 3) Friday mornings have nothing.  Not great we thought, but hey, my mom is semi-retired (works part-time) and lives in town and is willing to help, so maybe this will work!

This week though we found out from Easter Seals that actually they can only do 2:30-4:30 MWF, and 12:30-3:30 on Thursday, and nothing on Tuesday (!!!!!).  Oh and the morning program from the school district doesn’t run at all over the summer.  This information made our plan go from merely very difficult to impossible.  Looking into other programs in our area, we found that there’s only one all-day preschool program geared towards kids with disabilities, which is not specifically for ASD kids and does not incorporate ABA.  And we’ve been on their waitlist since last November.  We hope to get in with them in August.  I also found 3 other programs that are similar the the two I described, 2-3 hours per day of ABA and/or speech therapy, 3-4 days/week.

So, new plan.  She’s currently in a “regular” all-day preschool environment, with therapists that come work with her there every day under the state early intervention program she is about to age out of.  But, we have lots of “make-up time” on the books, meaning every time someone cancelled because of illness or whatnot, we can have them “make-up” those sessions even after she turns 3.  So the floor won’t fall out for a few weeks yet.  But once her make-up time runs out, it’s the end of formal ABA, speech, and occupational therapies for her, and it means greatly reduced help at preschool, unless we come up with another plan.  Also, the preschool will need to “hold her back” because the 3-year-old room requires potty training, which she doesn’t yet have.  We’ve already privately hired one of her ABA implementers for part-time care, and we are partially reimbursed through a county program.  We can use this to keep this particular implementer on indefinitely, with some manageable cost to us, but without the BCBA who designs the ABA program.

All of this is super frustrating.  Why are we only being given important information 2 weeks before the big change over, despite being in touch with the relevant people since last December?  More than that, why are all these programs only 2 or 3 hours here and there?!  It seems like the only way to actually use these things is to have a stay-at-home parent.  None of this is designed for someone who works even part-time.  I literally feel forced to choose between my academic career, which I have worked really hard for my entire life, and getting the best interventions for my child with autism.  Not only is it not fair to ask myself or my husband to give up our jobs, we wouldn’t be able to afford our home without both incomes.  We could potentially do something really drastic, like have one of us quit our jobs (with greatly reduced earning potential forever as a result, we’re both early in our careers) and moving to a much more modest home (not that our home is particularly extravagant).  But we’re not going to.  We’re going to do the best we can with what we have, and hope that she’ll do OK.  We may or may not also do the morning preschool program, with attendant driving across town twice a day, depending on what we think when we finally get to see it.

 

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.

 

Vaccines DO NOT cause autism

I can’t believe I am writing this. I can’t believe the vaccines and autism thing is back, again. But President-elect Trump has repeatedly endorsed this false claim, and even met recently with Robert F. Kennedy Jr., a noted proponent of this idea, about the possible creation of a new anti-vaccine arm of the federal government.

In case someone reading this doesn’t know the facts: Vaccines DO NOT cause autism. There is no scientific or medical controversy about this. It is unequivocal fact. The original paper that claimed a link appeared in the Lancet in the late 1990’s. It later turned out that the data was fabricated, the paper was retracted, and the lead author was stripped of his medical license. The issue was studied further, and multiple large studies show absolutely no link and confirm that vaccines are incredibly safe. It’s just plain not true.

Bad science claims often have teeth. They cling on in the public consciousness for extended periods after being disproven within the scientific or medical communities. The vaccines and autism one is particularly bad. In some areas of the U.S., vaccination rates have fallen sharply due to this mistaken belief, causing cases of things like mumps and whooping cough to drastically increase. When my daughter was born, I worried a lot about whooping cough because at the time I lived in an area with decreasing vaccination rates due to false autism fears. Whooping cough is pretty harmless to healthy people, presenting similarly to a bad cold. But in newborn infants or people with weakened immune systems, whooping cough can kill.  The whooping cough vaccine is not safe to give to these populations, meaning they must rely on others to vaccinate themselves. Every parent that chose not to vaccinate their child because of a false belief they might get autism increased the chance my premature baby might die. Of course I insisted that all of my family receive the vaccine, including extended family that might visit, and I vaccinated my child as soon as it was safe to do so at age 2 months (this is the age of the first dose, but subsequent doses are also needed).

If you are a parent considering skipping or delaying the DTaP for your child (the one that prevents whooping cough, along with tetanus and diphtheria) or any other vaccine, consider that your actions might kill someone else’s beloved newborn baby. Your child might kill a baby just by coughing near him or her in a grocery store and never even know it. The threat is very real, and vaccines are clearly very effective and life-saving. According to the CDC, before the DTaP vaccine approximately 8,000 people died from whooping cough every year in the US, most of them infants. In the period 2000-2014, 277 died from whooping cough (241 of those under 3 months of age), for an average of around 19 people/year. That’s a huge improvement over 8,000, but this important progress is being undone by Mr. Kennedy, Mr. Trump, and parents who listen to their vaccine hysteria.

I find all of this especially scary and insulting as the parent of a child with autism.  I have been asked by complete strangers if I vaccinated my child and if that’s why she has autism.  Of course my child is fully vaccinated. To do otherwise is extremely irresponsible. And no, it has nothing to do with her autism. She would have autism whether she was vaccinated or not, but at least with the vaccines she won’t have autism AND the mumps. And thanks to me and parents like me, your child is less likely to get mumps and your baby is less likely to die from whooping cough.

For the love of God or whatever you find holy, please please please vaccinate your children. There has never been a clearer moral parenting choice. Any controversy on vaccines is 100% fabrication, and any doctor, politician, or other authority figure who says otherwise should be considered untrustworthy.

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.

Playing the A-card

When Husband and I find ourselves in social situations with our daughter, we often wonder if and when we should “play the a-card” as I put it.  That is, when is it better to tell people she has autism as a way of explaining strange behavior vs. not singling her out as different.  In the past I think I have been to quick to blurt out “she has autism” because I often get denials like “oh, she’s so young, how could you know that” or “she seems normal to me” (see my post on Breaking the Parenting Mold called “Stop Trying to Convince Me My Daughter Doesn’t have Autism”).  So now I try to hold my tongue, because I recognize that while her stimming behaviors or language delay or lack of social interaction may be obvious to me, it’s not always as obvious to others, and it’s usually better for everyone if people treat her like every other kid.  Most people write off her odd behaviors as just being a toddler.  It’s only after spending a lot of time with her that the differences become more obvious.

There’s also that look that I get when I say “she has autism.”  A look of pity and confusion, followed by other parents keeping their distance.  I’m willing to bet every parent of a kid with “special needs” knows that look.  Or, less commonly, “oh, my sibling/cousin/friend’s sibling has autism!”  followed usually by a description of how they function as an adult, ranging from “she lives in a group home, but seems to like it there” to “he made it through college and has a good job now.”

Sometimes though playing the A-card is necessary and can illicit help and understanding we might not otherwise get.  For example, we took our daughter to an event with bouncy houses.  She’s obsessed with her shoes and screams at taking them off, but wanted to get in a bouncy house.  The employee supervising said that kids had to take their shoes off, but when we tried she screamed and it was clear that removing her shoes was traumatic for her.  We explained that she is autistic and the employee kindly made an exception and allowed her in with shoes.

So readers (all 10ish of you?) when do you play the A-card for your kids/relatives, or for yourself if you are on the spectrum?  What results have you gotten?